ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mindyandy on May 14, 2008, 12:06:18 pm
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Hey guys...sorry it has been awhile. I miss everybody. As some of you know I had CK done on the end of January 08 (so about 4 months ago). Well I had my 2/3 month MRI follow-up and it showed swelling 34%. I dont have actual # right now.
So she said since I was not experiencing any problems just come back in 6 months. Well here I am experincing problems... such as fullness, some discomfort and occational fading of hearing. So I am on Decadron 1mg (low dosage) 1 pill twice a day. I just started yesterday.
My question is/or what I'm wondering is if those who have experience swelling from radiation could post their swelling sizes and tell me if the swelling has gone down? How long did it take? Things to help me thru this ordeal....I GUESS I JUST NEED SOME REASSURANCE.
ONCE AGAIN MISS EVERYBODY & I'M GLAD TO SEE ALL IS WELL.
Thanks
Mindy
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Hi Mindy,
Sorry to hear about the swelling. It happens, unfortunately. There are some posts by jb, who had quite a bit of swelling, though I don't know the numbers. He took some Decadron and it seemed to control it pretty well.
The one thing I can say is that I got a call from one of the nurse practitioners in Dr. Chang's office at Stanford, to report his view of my last MRI. We talked about swelling and fullness and such, and she said A) it can occur any time up to 18 months after treatment; but more importantly B) most of the time it does not cause any permanent damage. The steroids are mainly just to make you feel better; the swelling will go down by itself anyway, without doing harm. I get only small symptoms now and then, but I found her view reassuring.
Hope you feel better soon.
Steve
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Hi Mindy,
I had swelling of about 10-15% at the 12 month mark, or there about, and it returned to normal and even shrank to a the size it was pre-treatment by my second annual MRI, 24 months post-CK. During the time I had the swelling I had increased tinnitus, some short pain episodes, and in general increased symptoms. Lost some more hearing, about 5% down. All those symptoms vanished or returned to 'normal' when the swelling vanished, except for my decreased hearing. I didn't take any steroids.
sizes: diagnosis: 24mm; at CK: 26mm; swelling: around 30mm or so, no precise figure for that; present size 3 years+: 22mm
Hope this helps.
All the best
Lorenzo
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Thanks guys! You give me much support. I would like to hear from jb. Yeah....good ol' swelling. No fun. Thanks for the reassurment it is very helpful. I'm glad to hear you guys are doing well.
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Hey Mindy,
Good to hear from you! Sorry you're having the swelling problems though. :(
I'm a sweller too. My AN turned dark in the center, but has almost doubled in volume since CK. My biggest problem has been headaches and fluctuating hearing. Decadron has helped with that, especially the headaches. They started me on a high dose for a couple of weeks, but now I just use 1-2 mg occasionally for a few days when I'm having problems.
I found a chart that shows the change in size of AN's in the years following GK radiosurgery (GKRS) in a paper that was mentioned a couple of weeks ago. I figure CK should be similar. I copied part of the chart below. It basically just shows that you can get good control over time whether your tumor swells up initially or not. (Swellers on the left, non-swellers on the right) It was reassuring to me to see that the tumors that swelled up fast usually shrink fast too. "Ratio" is just tumor size divided by its original size, so mine would be about a 2 right now.
(http://i253.photobucket.com/albums/hh53/jrm5c/ANSizeVsTime_postGK.jpg)
Here's some other excerpts:
"Most tumors that showed temporary enlargement
reached their peak within 1 year and regressed
within 2 years. Maximum temporary enlargement
was double the initial tumor volume in some cases."
"Serial MR studies of unilateral vestibular
schwannomas treated with gamma knife radiosurgery
showed that temporary enlargement of tumor
occurred in 41% of cases. Temporary enlargement
occurred mostly within the first 2 years after radiosurgery.
Subsequent regression of tumor volume
occurred during and after the second year following
radiosurgery. Because such enlargement within 2
years after gamma knife radiosurgery is usually
followed by regression, close follow-up with neuroimaging
is desirable in these cases."
Full text: http://www.ajnr.org/cgi/reprint/21/8/1540.pdf (http://www.ajnr.org/cgi/reprint/21/8/1540.pdf)
I don't know if it makes you feel any better, but I think everything your experiencing is in the "normal" range. Believe me, I understand the swelling is no fun, but hopefully you're getting some relief from the Decadron. My experience has been that the symptoms are probably going to hang around awhile so I hope you can find a good way to manage it.
Best of luck,
JB
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Thank you soooo much. Yes the information is very helpful and helps make me feel better. My 2 month MRI didnt show darkening...but I'm sure 2 months is a bit early. I am on a very low dose 1mg twice a day right now. I feel a little difference but not much. If I dont feel more of a difference by tomorrow then I am going to call and ask to up dosage.
When is your next MRI? I sure hope your swelling goes down and it shows more darkness. Keep me posted.
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Hey Mindy! Fab to see you! I'm glad to see you posting... it's been a while!
Ok, in my case.... I ran into minimal post-CK swelling approx 3-6 mos post treatment. No dimensions were given to me but, if needed, I was taking ibuprofen as the RO didn't feel there was any need for me to be back on Decacrap. The swelling was slightly noticable on the MRI, but for me, very tolerable. Like you, I had ear fullness, some head pressure, etc... but the Ibuprofen helped.
For me, I found that after approx 7 mos, things started to calm back down... and since my 8 mos post-CK MRI... I've been on the fast track for wellness... and here's wishing you the same ride on that same track!
Hang in there... hoping things ease up sooner than later. Hang tough!
Phyl
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jb,
That's another fine bit of research you have done. I like the graphs, it pretty much says it all. The 41% figure for swellers versus non-swellers is interesting, I have wondered how common that kind of swelling was. I am also impressed that the ratios go so low 4 years out - on both graphs. That's gonna be us one day!
This is important information for those who have had radiation treatment and have enlargement on an MRI in the first two years. Thanks for posting it.
Steve
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I also meant to say Hi to Lorenzo. It has been a while since I've seen a post from you; I hope all is well and you are coping with your noisy classes and finding good coffee somewhere.
Steve
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Thanks, Steve. We'll have to also thank our friend Philip at AN World... he's the one that passed along the link to that paper a couple of weeks ago.
Mindy, my next MRI is in August. It'll be my 1 year anniversary! :o Hopefully I'll be headed in the right direction by then.
I was going to mention that the side effects of Decadron can be pretty nasty, especially higher doses. I'd try to get by with the lowest dose you can. I usually get along fine taking it every other day and it's supposed to be a little easier on the body that way.
Hope you're feeling better,
JB
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Adding my - or should I say my husband's - two cents to the swelling thread. Larry had his meningioma surgically removed in 2004 and was on a small, quick taper of Decadron with no problem. When his "booger" decided to reappear in 2006, he did not want another surgery and opted for CK done on 10/1/07. His meningioma (even though benign like an AN) was growing 0.5 to 1 mm a month. He did extremely well until Xmas of '07 when he had what was felt to be a partial/focal seizure related to swelling around the tumor. A few doctors screamed "SURGERY" but the RO who did the CK said let's try Decadron at 8 mg/day for an extended period and then taper down. That started in early January and within a month he was having terrible side effects from the "Decacrap" (thanks Phyl for that term). Kidney function, liver functions, and protein levels were all abnormal. He developed cellulitis and needed antibiotics. He swelled up like a balloon. He went through every test imaginable - there was not one week through this past winter that we did not have at least two medical appts - or as we decided to call it "a double header"!! Finally with the slow weaning of the Decadron, all functions started returning to normal. The latest MRI shows the tumor has not changed since the CK on 10/1/07 and for a tumor that was growing monthly that is wonderful news. Unfortunately, the lMRI still shows just about the same amount of swelling and minimal symptoms. Next followup with RO is June 9th with an MRI and hopefully no more Decacrap!!
Sheryl
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All very interesting stuff to read, thanks guys. Wish I had known all this when i had my swelling episode. NOt that it was that bad at all, just good to know all this.
Hi Steve, doing great, slight frustration at SSD these days, but fine otherwise. Finding good coffee yes, and making my own. lol Classes have now stopped for the summer, so no students. It's now payback time, assessments of their projects, hehehehehe... :) And meetings, LOTS of meetings... I can feel the darn thing swelling at the thought of those meetings!
Ciao
Lorenzo
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Great information, especially the charts. Much appreciated.
Can anyone else share when was the earliest onset (post-surgery) of their side effects due to swelling? I have an extremely important week-long business trip scheduled for late July. I'm wondering if it would be wise for me to delay CK treatment until after that trip, rather than have it performed before the trip, if my doctor (Dr. Chang) believes I must have the treatment soon. I am awaiting his analysis and recommendation vis-a-vis my followup MRI and audiogram.
Many thank,
Tumbleweed
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Hi Tumbleweed,
If you do end up getting CK, I would schedule it for early August. That is only two and half months from now, which is still soon, at least by AN standards. Then you won't be worried about it affecting your trip. I don't think I have heard people having swelling reactions during the first month; the prime time seems to be more like a 3-9 month window. My worst experience was almost exactly 3 months after treatment.
Steve
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This may not add anything of value to the thread as I had FSR, not CK, but it's still radiation and (I believe) worth mentioning.
My then-2.5 cm AN swelled to 2.8 cm within six months of the completion of the FSR treatments (26 over 5 weeks). I had intermittent stabbing pain in the AN area, a continuing 'tight' feeling on the AN side of my skull and a full feeling in my left (AN side) ear. This all subsided within six months of onset and my one year MRI showed the tumor had shrunk to 2.5 cm and showed signs of necrosis. My next MRI is scheduled for June (my 2-year surgery anniversary). Lately, I've experienced a few intermittent periods of stabbing pain on the AN side and my dry eye bothers me more often (but OTC drops still fix it) so there may possibly be some swelling going on, still. Frankly, I hope not. I expect to have an interesting chat with my neurologist next month.
Tumbleweed; I agree with Steve that postponing the CK until August to avoid any possible negative CK ramifications is a good idea. I would.
Jim
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I had substantial swelling -- not sure of the exact figures but at treatment my AN was about 2.6 cm at the widest point and at six months was more like around 3 cm (with intense darkening in the tumor as well). I felt pretty horrible for months 3 - 8 or so after treatment, with the 6 month mark being the low point. Decadron helped but came with its own side effects. It's easier to say in retrospect but I would advise anyone taking that drug to keep the dose levels as low as possible. it's intense. the great news is that about 8 months out everything started to settle down. i have my 1 year MRI in August and am not sure what it will show in terms of the size of the AN, but i am thrilled at how dramatically my symptoms have faded -- including the balance episodes i was having before treatment and for many months after treatment. my energy levels are way up and i can actually jog and work out, etc.
i was very nervous that post-treatment symptoms would last indefinitely. but take heart: there really is continual improvement as time passes!!
be well,
francesco
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i am thrilled at how dramatically my symptoms have faded -- including the balance episodes i was having before treatment and for many months after treatment. my energy levels are way up and i can actually jog and work out, etc.
francesco
Thanks to everyone who responded to my question about when to expect side effects post-CK. It's very helpful for me to know what to potentially expect after CK treatement and roughly when.
Francesco, I am intrigued and heartened that CK treatment eventually led to you having better balance and more energy. I've been plagued by constant (mild to moderate) disequilibrium for the past 8 years and the fatigue that goes along with constantly fighting that when working out or hiking. Tests of my vestibular function reveal a loss of roughly 70% of function on the affected side, so I'm not too confident it will improve after 8 years of symptoms (plus however many years the vestibular nerve was getting trashed before the onset of symptoms, during the early stage of tumor growth). Francesco, how many years did you have balance issues before you were treated? And what were the issues you had to deal with during months 3-8 post-treatment? Did it make you miss any work days or keep you in bed all day?
Also, I've heard a lot of people on this forum talk about how bad Decadron is. Can someone please elaborate on what the side effects were? Not in medical terms (decreased kidney function), please, but in terms of what it felt like (inability to unrinate???).
Thank you!
Tumbleweed
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Hello Tumbleweed,
My first symptoms began surfacing around March 2007 -- a few months before I was diagnosed and treated. I had facial numbness at first and then gradually began feeling other strange sensations and knew something was wrong. I started having balance problems only a few weeks before treatment. I would have episodes of intense dizziness that would last a few hours and then fade away. And then the episodes started getting longer. I was very concerned that CK would be ruled out as an option for me because of these balance issues but I was assured by my doctors that I could still proceed.
After treatment, dizziness was by far the worst symptom for the reasons you describe: apart from the unpleasantness of the sensation, it completely wipes you out. I was completely exhausted for several months (esp months 3-6). I would get to work late and leave work early and then collapse on the couch. (I did not actually miss a single full day work, though. Working kept me sane and I feel blessed to have been able to continue on the job throughout.) The Stanford folks were not concerned by this and basically assured me that the symptoms were probably due to tumor inflammation. They kept telling me that the symptoms would probably fade at around 8-9 months , or maybe after 1 year or in rare cases, 2 years. I was pretty skeptical at the time and thought I would be plagued with debilitating balance problems for years.
As I mentioned, a couple of months ago I started to feel real improvement in energy levels and a welcome stabilization on the balance front. I now have a very minor lingering sensation that does not effect my energy level or ability to run and work out. At treatment time, I was told there is something like a 30% or 40% chance that pre-treatment symptoms will improve and a 60% chance that they will remain the same, with a very small group actually worsening. I'm not sure if my results are reflective of what everyone should expect. I never had balance testing done before treatment, and Dr. Chang told me he didn't think he needed to see a balance test in my case. I think you are absolutely right to look very hard at the balance issue in determining what treatment road you should take, since it is a serious quality of life issue.
Decadron helped with balance issues but for the three weeks I was on it I barely slept and gained about 15 pounds (after two decades at the same body weight). In non-medical terms, I felt like a sleepless zombie roaming the world constantly in search of something to eat. Apart from these obvious side effects, I just had this sense that the drug was very disruptive to the body. It took a long while for me to feel the effects of the drug had faded. I was glad for the relief it provided at the time, but I'm skeptical in general of drugs and this one, in my humble opinion, is best avoided if at all possible. I actually think most doctors agree with that assessment anyway. Most doctors hope their patients can avoid it.
Hope this helps. Please feel free to contact me anytime with more questions.
Francesco
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Thanks for your comprehensive post, Francesco. It is a huge help.
Best wishes,
Tumbleweed
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I talked with Dr. Chang today about my followup MRI results. He concurs that my tumor has grown faster than the average AN does and is concerned that it has grown in volume about 60% in only six months. And whereas six months ago my tumor was 1 to 2 mm away from my brainstem, it is now touching (but not denting) it. So I may not want to wait til after my business trip at the end of July before getting CK treatment.
Dr. Chang said that I can pretty safely wait 2-3 months (after my last MRI in mid-May) to have treatment, although he didn't recommend waiting (nor did he recommend rushing into treatment; he was very respectful of me making my own decision). Considering the fast growth rate of my tumor, does anyone else have an opinion as to whether I should go sooner (in June or early July) rather than later (in August)?
I can go in a few weeks and run the risk that swelling will occur in the first month post-treatment and before my trip. Or I can go in the second week of July and risk being wiped out two weeks later when I leave on my biz trip because I didn't leave myself time to recover. How many people on this board felt really wiped out in the first few weeks after CK treatment?
Thanks for your support,
Tumbleweed
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I was treated in mid September last year, and didn't feel much effect until December. If I were in your shoes and decided to get CK before the meeting, I would probably go in June rather than early July. I don't remember being tired the first few weeks, but it seems like having more than two weeks would be more comfortable. Even the early swellers seem to wait at least two months before stirring things up.
I still think you would be okay waiting until early August, it is just two months away now, but that is up to you and Dr. Chang, not me. Hope you can sort it out and pick a date.
Steve
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Thanks a ton for your perspective, Steve. You are always so giving of your time.
The problem for me is that early August appears to be problematic as far as my work schedule goes. If I wait til August to get CK, it would likely be late August. That would be almost 3-1/2 months post-followup MRI, which is a longer delay than what Dr. Chang said was reasonably safe for me to wait.
Anyone else care to weigh in? I'm especially anxious to hear from people about how they felt in the early weeks after CK treatment. Perhaps I'd get more responses if I started a new thread targeted at that question. I'll do that now.
Thanks,
Tumbleweed
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I found a chart that shows the change in size of AN's in the years following GK radiosurgery (GKRS) in a paper that was mentioned a couple of weeks ago. I figure CK should be similar... Here's some other excerpts:
"Serial MR studies of unilateral vestibular
schwannomas treated with gamma knife radiosurgery
showed that temporary enlargement of tumor
occurred in 41% of cases. Temporary enlargement
occurred mostly within the first 2 years after radiosurgery.
I talked with Dr. Chang (Stanford doctor) a few days ago. He told me that my risk of swelling post-CK was about 25%. Dunno if that's the average for everyone with CK at Stanford or my odds in particular, but I got the feeling that's what he meant.
Interestingly, Dr. Chang said there are two types of swelling:
1. That which shows up on an MRI (as enlargement of the tumor)
2. Clinical swelling, in which the MRI shows no sign of swelling yet there are symptoms of swelling.
The 25% figure, he said, was for 1. and 2. combined. So I take this to mean that the absolute total percentage of CK patients that are swellers is 25% at Stanford.
Dr. Chang also told me that most CK patients who swell do so 6 to 12 months post-treatment.
I scheduled my CK treatment today for the week beginning July 7th. Here we go...
Tumbleweed
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I talked with Dr. Chang (Stanford doctor) a few days ago. He told me that my risk of swelling post-CK was about 25%. Dunno if that's the average for everyone with CK at Stanford or my odds in particular, but I got the feeling that's what he meant.
P.S. That is, I got the feeling he meant the 25% figure was the average for all CK patients at Stanford. But my assumption could be wrong.
Tumbleweed
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Here's some other excerpts:
"Serial MR studies of unilateral vestibular
schwannomas treated with gamma knife radiosurgery
showed that temporary enlargement of tumor
occurred in 41% of cases. Temporary enlargement
occurred mostly within the first 2 years after radiosurgery."
Full text: http://www.ajnr.org/cgi/reprint/21/8/1540.pdf (http://www.ajnr.org/cgi/reprint/21/8/1540.pdf)
Thanks so much for sharing this research with us, JB. I followed the link and read the entire report. Here are some of my observations:
1. There are 4 charts shown (I would post the other two, but I don't know how to copy and paste them into a post). The two charts and accompanying analysis not included in JB's post show continuous tumor enlargement (i.e., that which did not shrink after enlarging) in 12% of patients in the study and alternating enlargement and regression (shrinking) in 13%. Taken together with the 41% who exhibited temporary enlargement, this brings the percentage total of all swellers post-CK treatment to 66% in this study. It is important to realize that only 61 patients are included in the charts, however, so this is a relatively small study compared to others of its kind (and therefore has a larger margin or error). While 78 patients had follow-up MR studies, only the 61 who are included in the charts had *serial* MR studies (more than one followup MRI).
2. The report is a bit sloppy, IMHO. The first page of the report states, "Follow-up MR studies were obtained between 10 and 63 months (mean, 34 months) after treatment." Yet, the 4 charts all show the vast majority of the patients received their first follow-up MRI within about 6 months of treatment. Also, tumor volume for patients included in the study is cited to have "varied from 0.2 to 20.1 mm3." Taken literally, this would mean the tumors would have to have all measured under 3 mm in all three dimensions on average. I think the authors probably meant to say that maximum tumor dimension on any one axis varied from 0.2 to 20.1 mm, in which case this study excluded large tumors measuring over 2 cm. I have heard Japanese studies of vestibular schwannomas criticized elsewhere as constituting "sloppy work," casting doubt on their accuracy. I have never before seen any reason to support that criticism, but this report left me suspicious.
3. This report spans a period from 1991 to 1996. Technological advances in computerized dose planning and MR imaging over the past 10 years might yield better results in patients receiving GK treatment today.
4. It appears as if the charts each show one segmented line for each patient included in the study of serial-MR results. But it's important to realize that the text of the study also reports on results of those patients who had only one follow-up MRI, and not a series of follow-up MRIs. This larger group (serial + one-time follow-up MRIs) constituted 78 patients. In this group, the rate of tumor control was cited to be 81%. The report later states, "IN OUR SERIES [my emphasis], the tumor control rate was 81%." Again, sloppy work because the charts show only 11% of the patients who had serial follow-up MRIs had continuous (not temporary) enlargement. A tumor control rate of 89% is more in line with that reported in other GK studies, such as Flickinger et al (89% tumor control rate) and Noren et al (88%); both of those studies occured in the early- to mid-90s.
5. The report also concluded that "a transient loss of contrast enhancement does not necessarily predict subsequent tumor regression." In other words, dark spots in the tumor showing on the MRI do not necessarily predict a tumor will shrink in size. A study by Linskey, Lunsford and Flickinger in 1990 concluded, however, that transient loss of contrast enhancement was found to be a good prognostic indicator of tumor regression, so the jury is out on this point.
In conclusion, this is an interesting bit of research and I'm really grateful that JB brought it to our attention. But, in light of the sloppy reporting contained therein, I for one am taking it with a grain of salt.
I know of no other studies quantifying tumor swelling post-GK treatment. But Dr. Chang told me last week that the chance of my tumor swelling after *CyberKnife* treatment is only 25%. CyberKnife (CK) is a different type of radiosurgery from GK. CK has a shorter track record, as it's only been approved by the FDA since 1999 (although Stanford has used it since 1994 in clinical trials). One of the perceived advantages of CK over GK is that the dosage of radiation is applied more homogeneously throughout the entire tumor. Dosage at the center of the tumor is only 15% higher than at the periphery, as opposed to double (100% greater) dosage at the center compared to at the periphery for GK. FWIW, this is one of the key reasons I have decided to get CK instead of GK, as I feel that my chance of tumor swelling are less if no part of the tumor receives more radiation than it needs to kill it (reducing collateral damage to nearby healthy tissue). I also like that CK is non-invasive, delivers fractionated doses (which some research indicates preserves hearing better than getting one huge dose) and can be repeated.
Tumbleweed
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Thanks so much for sharing this research with us, JB. I followed the link and read the entire report. Here are some of my observations:
1. There are 4 charts shown (I would post the other two, but I don't know how to copy and paste them into a post). The two charts and accompanying analysis not included in JB's post show continuous tumor enlargement (i.e., that which did not shrink after enlarging) in 12% of patients in the study and alternating enlargement and regression (shrinking) in 13%. Taken together with the 41% who exhibited temporary enlargement, this brings the percentage total of all swellers post-CK treatment to 66% in this study.
Tumbleweed
Oops! I meant to write that "...this brings the percentage total of all swellers post-GK (after GammaKnife) treatment to 66% in this study." Swelling post-CK treatment was not analyzed in this study. Sorry for any confusion I might have caused.
Tumbleweed
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Steve,
What were your side effects at 3 months?
Sherry
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Hi Sherry,
The side effect at 3 months was a really lousy Christmas. :P
Basically it felt like someone blew up a balloon inside my head. The pressure sensation was in my ears - that fullness feeling - plus in my sinuses and even my front teeth. I had a really bad cold, and I can't say whether the AN made the cold worse, or the cold made the AN worse - they both made me feel worse, though. Several times I almost called the doctor to get steroids, but it would die down just enough to make me wait another day. I ate a lot of chicken soup and slept a lot.
Steve
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Congrats on your decision, Tumbleweed. I think you're wise to get treatment sooner rather than later and I appreciate the research you've reported above. Best of luck with the treatment (which is a breeze) and here's hoping you're one of the non-swellers (though, if like me you get some swelling, it isn't too bad either). Best, Francesco
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Congrats on your decision, Tumbleweed. I think you're wise to get treatment sooner rather than later and I appreciate the research you've reported above. Best of luck with the treatment (which is a breeze) and here's hoping you're one of the non-swellers (though, if like me you get some swelling, it isn't too bad either). Best, Francesco
Hey, Francesco, you don't know how good your timing is! Your message was just what I needed to hear.
I was vacillating today about whether to postpone treatment til the end of August. I know in my heart I should do it sooner. My mind is just desperately searching for excuses to delay. Emotionally, I'm like a rat in a burning house looking for a way out! Anyway, thank you for taking the time to reassure me I've made the right decision to do it sooner. I think if I waited, I'd just have that much more time to worry about it. Not to mention risking further hearing and/or balance loss.
Beam me up, Scotty! :D
Tumbleweed
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All the best Tumbleweed, you're in great hands with Dr Chang and Co.!!
Ciao, Lorenzo
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Thanks for your encouragement and assurances, Lorenzo. BTW, did you choose Dr. Hancock to serve as radiation oncologist (RO) on your CK team, or did Dr. Chang? Were you happy with Dr. Hancock? I don't have an RO assigned yet. Any feedback/info/opinions would be deeply appreciated.
Many thanks,
Tumbleweed
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Morning Tumbleweed,
Dr Hancock turned up when i met Dr Chang for the first consult when i got to California. Steve & Steve they introduced themselves as. Funny. I liked their attitude. I wonder if he's still there, I don't see him mention in any post on the forum here. I only met him once I think. Whatever, I found both very professional, good sense of humour (even when I did a jig during the 'walk-one-foot-in-front-of-the-other' bit. That convinced them of my compensated balance! lol) and very calming in a comforting sort of way.
When are you going for CK? Have you been to Stanford before?
Ciao, Lorenzo
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Hi, Lorenzo:
According to Stanford's website listing of doctors, Dr. Hancock is still there at Stanford.
I am tentatively scheduled to get treated at Stanford the week beginning July 7th. Waiting for pre-cert from my insurance company and to find out if the doctors can meet with me on a Monday for check-in/consultation (they usually don't do this on Mondays but try to accommodate out-of-towners like me). Scheduled to get zapped on July 9, 10, and 11.
So... if you only saw Dr. Hancock that one time, who planned and executed the radiation delivery?
Tumbleweed
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Hi Tumbleweed,
He planned it. Thinking about it now, he was there a couple of times to check things, but mostly it was the other team members that took care of the zapping and so on. Larry being one of them! They were all nice and really efficient. I actually did see Dr Hancock again at the end of treatment, before they sent me on my way to enjoy the rest of the stay in CA. I had a great time when there, mostly. Didn't like the steroids at all, but loved Stanford and the campus and bookstore there. Spent LOTS of time there, and at Cantor Arts Center too, eating lunch! I ate like a horse, pesky steroids!
If you want to ask me anything, please do. Send me a message or post here. :)
Ciao, Lorenzo
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I never had the sense that I got to pick a radiation oncologist; Dr. Gibbs was there for my first consult, and in and out throughout the week. As Lorenzo said, the techs do much of the work, although Gibbs and Chang got together on the treatment planning on Tuesday. My consult was on a Monday, with treatment Wed - Fri, so it isn't that unusual a schedule.
Have a good trip.
Steve
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Same for me Steve, never got the impression i could pick the rads oncologist. Same schedule too. Arrived in CA on a Friday, consult with them, MRI, CT and hearing tests on Monday, mask fitting on Tuesday, zapping Wed, Thu and Fri. I think this is the normal schedule, or at least it seemed to be at the time.
Ciao
Lorenzo :)
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Hey, Steve and Lorenzo:
Did it bother you at all that you couldn't pick your radiation oncologist (RO)? My feeling is that the person with the most experience is most likely to do the best job. For something so important, I'd like to have a say. Am I wrong? Does the choice of RO not matter much?
When you guys got your pre-treatment MRI on Monday, did the doctors tell you whether the tumor looked the same or grew? I'm hoping for spontaneous regression in the next 3 weeks! ;D But seriously, I'd like to know whether the thing grew anymore in the two months it'll be since my last MRI. Did the doctors show you the MRI?
Thanks for your replies, guys,
Tumbleweed
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HI Tumbleweed,
It didn't even cross my mind. As far as i was concerned, the entire team at Stanford had the experience I needed / wanted. I mean, it is the original CK place, right? Anyway, I wasn't going to start wondering about Dr Chang's choice of radiation oncologist, no need nor reason to! I trust them all!.
When I had my MRI I think I was told what size it was. I know it had grown since my previous MRI. Can't remember if I saw the MRI, probably not as they were working with it. I did get copies of the films afterwards.
Ciao, Lorenzo
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Tumbleweed, I was treated at Stanford by Dr. Chang and Dr. Soltys. Didn't get to choose radiation oncologist Soltys, but everyone was kind and caring throughout. You're in good hands.
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"marystro" from San Diego , who used to post here more often, also had Dr. Soltys along with Dr.Chang. She was very happy with him as well
Mark
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Thanks, Lorenzo, Teasely and Mark, for your replies.
I found out a couple hours ago that Dr. Gibbs will be my RO. I'm happy about that, as she's the co-director of the CK program at Stanford. Dr. Chang also gave Drs. Hancock and Soltys the thumbs up.
My insurance pre-cert also came through today, so the wheels are now rolling. I'm nervous but, at this point, ready and eager to get it done and not have it hanging over my head anymore.
Best wishes,
Tumbleweed
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I'm nervous but, at this point, ready and eager to get it done and not have it hanging over my head anymore.
You will, of course, have the Cyberknife arm itself hanging over your head for a few hours during that week. Best to keep your eyes closed and pay no attention. It is big but quiet, like a calm and slightly curious alien taking a close look at you. :D
Steve
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You will, of course, have the Cyberknife arm itself hanging over your head for a few hours during that week. Best to keep your eyes closed and pay no attention. It is big but quiet, like a calm and slightly curious alien taking a close look at you. :D
Steve
Aha. So... a "close encounter" with radiation, huh? ;D
Good to know it's quiet. The jackhammer noises inside an MRI unit are a bit unnerving. And I always thought the distorted, pulsing tone an MRI makes sounds a bit like the beginning of a Led Zepellin guitar riff. Anyone who's had an MRI lately and is a Zep fan knows what I mean!
I'm-a-headed to Stanford for a whole lotta love...
Tumbleweed
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Speaking of Led Zep, bring your favourite music to play while being zapped. Talking Heads would be good. You can listen to your own choice while encountering the alien. I was spared Christmas muzak as I had my own jazz CDs to listen to. CK is very quiet!
Oh, and eat lots and lots of vegetables and prunes, those steroids set me back for a good while because I didn't know!
Ciao, Lorenzo
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Hi Lorenzo, I`m about to go on a short course of steriods for a week 25mg two times a day . I see you took some and was wondering if you meant that you became constipated? Any othe rside affects? Thanks Mickey
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Speaking of Led Zep, bring your favourite music to play while being zapped. Talking Heads would be good. You can listen to your own choice while encountering the alien. I was spared Christmas muzak as I had my own jazz CDs to listen to. CK is very quiet!
Oh, and eat lots and lots of vegetables and prunes, those steroids set me back for a good while because I didn't know!
Ciao, Lorenzo
Thanks for the advice, Lorenzo! I appreciate it and will certainly follow your recommendations.
Best,
Tumbleweed
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HI Tumbleweed and Mickey,
Indeed, it made constipated like nothing before in my life! Now, maybe I'm special, I don't know, but I know that I didn't have normality back for about two weeks. YIKES! I never forget it. Also, I ate like a horse if I didn't curb the hunger by ignoring it. Food went in, but stopped en route. Not good. Boy, that was NO FUN! So, eat light, greens, juices, lots of water and take anythign to help move things along.
Sleeping and lots of energy was another problem for me. I had more energy then then I have ever had! Shopping, sightseeing, touring, driving, visiting places, walking... did it all, and still didn't sleep! I must have had a realy bad reaction to steroids. Oh boy. I'd naver taken them before that, in fact, I never took anything more than a few tylenols. It was all new to me!
This said, I know some people didn't have the problem. But, prevention is MUCH preferable than trying to cure it.
:) caio, Lorenzo
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Mickey - Were you prescribed something other than Decadron because 25 mg twice a day is an extremely high dose??? Maybe you meant 2.5 mg???
Sheryl
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Hi, Lorenzo:
Thanks for the advice and warnings about steroids. I, too, very rarely take any drugs. It's not uncommon for me to have only one or two doses of ibuprofen in the span of a year or two, if that. I'm very sensitive to drugs, so I'll be preparing myself for the Decadron side effects. Great to know about them before hand so I know what to expect and how to counter it. BTW, psyllium seed powder mixed with water or juice is a great laxative, as long as you drink enough fluids (if you don't, it'll turn to cement in your intestines and make things even more plugged up!).
Best wishes,
Tumbleweed
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HI Tumbleweed,
Thanks for the plug, I mean, advice! :) I must take note of that, sounds interesting. I drink lots of water, which by itself helps prevent the problem normally anyway. Those pesky steroids though... Oh boy! Senna did nothing for me at the time, so gave up on that. On the plus side of steroids, I never felt so energetic! lol PErfect for walking around and shopping.
Other effects I had: After each session I used to come out with 'Onion Bag Face' the mask pattern being imprinted on my face from 45 minutes of pressure. Used to vanish after about 30 minutes. Also, I used to turn an alarming shade of red, and then a moment later look like a blanched almond. Weird. Tinnitus used to get louder too after each session and then calm down after a while. So those and the steroids / food dilemma were about all I can remember in terms of effects.
Psyllium eh? Off to google that now. Thanks!
Ciao, Lorenzo
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Thanks for relaying your post-CK experience, Lorenzo. That helps me mentally prepare for treatment and not get freaked out by these things if they also happen to me.
I believe psyllium is the main ingredient in Metamucil. Unlike senna, which "chemically" prompts peristalsis, psyllium prompts peristalsis mechanically -- by expanding into a mucillagenous mass when combined with water, and acting like a gentle broom for the intestines. It doesn't cause cramping. It's very gentle.
If I remember correctly, you mix about a teaspoon of the powder with an 8 oz glass of water or juice and drink it down quickly (before the psyllium settles in the glass). Then follow that with another 8 oz glass of fluids. Repeat as necessary. You can do a few psyllium drinks per day if needed. Just make sure you drink tons of fluids!
Best,
Tumbleweed
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...and thus turn into a cement mixer! lol Sounds good. Must see if I can get that stuff on this side of the Atlantic. Thanks for advice!! When you say tons of water, is that a one litre bottle, two litres, drown in it?
Sounds interesting. THANKS! :)
Ciao
Lorenzo
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Hi, Lorenzo:
Sorry for my delay in replying; clicking on the "Show new replies to your posts" link doesn't always show all replies, so I had no idea you had asked me a followup question until I wandered back to this topic. Perhaps the moderator could look into this ongoing technical problem with the Forum.
The answer to your question about psyllium is that you should drink at least a pint of liquid for each level teaspoon of psyllium powder you consume. That'll make it expand (like rice does when in water) and become gellatinous. Drinking less than a pint per teaspoon of powder will constipate even more. Drinking more than a pint is okay, but there's no need to go overboard.
I hope that helps.
Best wishes,
Tumbleweed
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Great, I'm a great water drinker anyway, so that will be like normal to me. thanks!
Ciao, Lorenzo
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oh steroids....I was on 1mg then bumped up to 2mg....I ATE EVERYTHING!!!!!!! I was always hungry and I ate whatever was in front of me. I didnt have any plugging problems.
I did however gain 10lbs in 2 weeks.... :'(
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Weird, the entire Ck period made me loose 10lbs, which I then proceeded to put back on post-CK. I guess I tried too many good restaurants in CA! lol No plug mindyandy? I knew I should have eaten more greens!!!
Ciao, Lorenzo
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Mindy,
I hope your swelling symptoms resolved since it cost you 10 lbs :(. I've been off Decadron for several weeks and no more headaches (or plugging). So maybe the worst is over, knock on wood. I'm at 10 mos. post-CK, but hopefully yours won't take that long.
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to ppearl, I would very much like to contact you! I live in Portland, Maine and am interested in trying CK at Beth Israel for residual tumor post surgery which sounds like the path you took. My posting name is Oregon, jope to hear from you.
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to ppearl, I would very much like to contact you! I live in Portland, Maine and am interested in trying CK at Beth Israel for residual tumor post surgery which sounds like the path you took. My posting name is Oregon, jope to hear from you.
Hi Oregon and welcome. You have a PM/email from me.....glad to answer any questions I can. :)
Phyl
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Ok guys I am now 6 months post CK and have been feeling pressure in front of the ear kinda by temple. I have been on dexamethasone (decrcrap) for 1 week 2mg 3x a day. Not really feeling the effects. I was wondering did you guys ever feel the pressure infront of the ear?
Strange....no hearing problems...HMMMM.
My CK dr is out of town till Monday.
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Where is everybody???????????
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Hi Mindy,
We are around, we are just hiding from you. ;)
I haven't had the particular sensation you are describing, and don't recall seeing it mentioned. Pressure in the ear, as in fullness, I have had off and on from day 1, but nothing in front of the ear or in the temple area. Maybe it is an effect of the steroid? Or is that the reason you are taking them? ???
I hope whatever you are going through gets sorted out soon. The first year post-CK seems to be interesting for everyone...
Steve
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Yes very interesting stuff. Thanks for being there. I was feeling lonely over here...LOL
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Ok today I had my 6 month MRI....measures 14mm x 11 mm...2 more mm???? My dr says its typical swelling...recheck in 6 months....I dont like this. No signs of darkness....I'm starting to get worried.....Phyl I'm taking deep breathes....HELP EXPERIENCED CK'ERS THAT HAD SWELLING....
Thanks
Mindy
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We need to get JB in here, his blew up like a balloon at 6 months. I think it is typical not to see darkness at 6 months (I didn't have any), it shows up more often at 12 months. 2mm swelling is not that much, so no huge concern there. Just hang on, Mindy, you will make it through.
Steve
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Well, here's a good chance to report:
I had some swelling at my six month MRI, with symptoms--a general sense of fuzzyheadedness, which is why I asked for an early MRI (my doc was going to wait a year). I just got my 18 month MRI today, and the AN is slightly smaller than it was a year ago. The fuzzy head went away gradually over the last year. So my point of view is that radiation treatment means taking a long view--don't get too upset if things don't look perfect, don't get too cocky when they seem to be going well. Take it one year at a time.
By the way--in the long run, 1/3 of all successfully treated ANs remain larger than they were at the time of treatment, 1/3 stay the same size, and only 1/3 actually get smaller. As long as they stop growing (as opposed to temporarily swelling), there's no problem.
Mac
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Hey mindy! I'm sure you saw my post (as well as Dr. Medbery's) on the CK board..... and you are familiar with the Head MRI margin of error of approx +/-2mm, so, m'dear.... you are right on target! Hang in there... and.... I'm thrilled you are breathing! Hang tough!
xo
Phyl
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THANKS ;) for all the support guys!!!! ALL YOU GUYS ARE THE BEST!!!!!
J.B. WHERE ARE YOU?
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Hey Mindy,
Hope you're feeling better and able to taper off the decadron. Just FYI, I was on it for about a month including the tapering phase and then a couple of times after that for just a day or two at a time. I've been completely "clean" for about 2 months now I think.
Just for fun, I plotted my tumor size on the graph from the beginning of this thread. (I'm an engineer.... we do this stuff for fun :'() Anyway, here's how it looks (I'm in red on the left side):
(http://i253.photobucket.com/albums/hh53/jrm5c/mri808/ANSizeVsTime_postGKJBCK.jpg)
I'm including this just to let you know things weren't looking so great for me back at 7-months. My tumor seemed to still be getting bigger, I saw a neurotologist that told me I was going to need surgery to get it out of there, my radiation oncologist wouldn't rule out that possibility (surgery) and I basically felt like dirt. But things turned around shortly after that and I'm hoping they will for you too. Who knows if it's 8 mos., 9 mos., etc., but I agree with Steve, Phyl, Mac, etc. that it's all pretty normal at this point and just try to be patient. Not my forte either, but hang in there! :)
Feel free to PM me if I can help.
JB