ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Palace on November 20, 2009, 05:33:31 pm
-
I was told at the time of treatment that it takes two years before, much shrinkage would happen from Cyberknife. (being so happy that I'm a "success patient") The target area was handled well by my team at Stanford.
Please feel free to post your measurement study and state if it was GK or CK. I asked that my data be sent via FAX to my home office. I took the dates and measurements off the report sheets for your interest.
Sept. 13, 06’ (diagnosis) 2.4 X 2.1 CM
Dec. 1, 06’ (date of TX) 2.8 X 2.0 X 1.9 CM
May 07’ 2.4 X 2.1 X 1.9 CM
Nov. 07’ 2.2 X 1.8 X 1.5 CM
May 08’ 2.2 X 1.8
Nov. 08’ 2.2 X 1.8 X 1.5 MM
Oct. 09’ 1.9 X 1.8 X 1.3 MM (present time)
-
8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8)
It's really "cool" about my CK working so well thus far. Sadly, I must report that I did lose my hearing completely as of this last audiologist testing a few weeks ago.
-
For the visually inclined, here is what Palace's data looks like as a Bar Graph:
(http://i335.photobucket.com/albums/m447/sgerrard_01/untitled.jpg)
I like where that is headed. 8)
Steve
-
Thanks, Steve.
I wish all AN radiation patients could see their progress in the form of a bar graph but I'm delighted to see Palace's tumor shrinkage in such an accessible structure. Nice job. :)
Jim
-
Steve,
Thank-you so much for the plot on a bar graph showing quantitative relationships for all to appreciate.
Regards and appreciation,
Palace
-
That is fantastic. Congratulations on such good news Palace.
Does anyone know how long CK/GK patients can expect shrinkage to continue? Is there a point after which no more size reduction is expected?
-
8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8) 8)
It's really "cool" about my CK working so well thus far. Sadly, I must report that I did lose my hearing completely as of this last audiologist testing a few weeks ago.
Great results.
Your hearing loss after a couple of years of treatment does happen.
Steve: great visual!!!
-
Great results Palace!! Heartiest Congrats....
I had GK in Aug 2005 and my hearing in the right ear is almost NIL... but the Tinnitus has taken over and its makes great music all the while.
My size to begin with was 2.8 x 2.2 x 2.2 cm and in Nov this year it was 2.2 x 2.0 x 1.9 cm, I now have to see my doctor after 2 years.
Best wishes
Shekhar
-
Congratulations, Palace. Great news! ;D
Very impressive graph, Steve 8)
Jan
-
Palace! What wonderful news! Congratulations!!
Hugs,
Brenda
-
Thats what ya like to hear! Great news, Mickey
-
DK,
CK/GK patients aren't expected to see any significant shrinkage until after two years treatment. Since it is the precise target point from the work of your "team" (and hopefully it's a skilled group of doctors as, this is the critical important issue for all the better results) and I had really experienced and quality doctors so, I was considered a high success patient. I was told that I could expect shrinkage up to about ten years, if I remember correctly.
I too DK wonder what other people were told, about a long duration of shrinkage.
Thank-you for the nice congratulations about my good news on the latest MRI.
Palace
-
That is fantastic. Congratulations on such good news Palace.
Does anyone know how long CK/GK patients can expect shrinkage to continue? Is there a point after which no more size reduction is expected?
Having just met with Dr. Chang at Stanford a few weeks back for my 8 year MRI, this topic came up in our discussion
The vast majority of CK / GK patients, if they have any shrinkage, will have it occur within the first three years. After that point, the tumor carcass tends to remain stable and the same size. In my case, I started around 2.1 X 1.9 X 1.8 and was somewhere around 25% less by volume by year 4. It has remained essentially unchanged since then. Everyone will be different to some degree, but if any shrinkage will occur, it happens in the first few years.
mark
-
That is fantastic. Congratulations on such good news Palace.
Does anyone know how long CK/GK patients can expect shrinkage to continue? Is there a point after which no more size reduction is expected?
Having just met with Dr. Chang at Stanford a few weeks back for my 8 year MRI, this topic came up in our discussion
The vast majority of CK / GK patients, if they have any shrinkage, will have it occur within the first three years. After that point, the tumor carcass tends to remain stable and the same size. In my case, I started around 2.1 X 1.9 X 1.8 and was somewhere around 25% less by volume by year 4. It has remained essentially unchanged since then. Everyone will be different to some degree, but if any shrinkage will occur, it happens in the first few years.
mark
Mark, may I walk in your shoes with results! :)
Palace, congrats on the news. At my 3 yr mark this past summer, there was visible shrinkage (noted by the NS without her having to physical measure it at that point... measurement came later) and as Mark notes, I do not believe that there will be much more. For me, the key is that the brain booger is dead as a doornail, the shrinkage is an added-bonus (IMO)
Continued wellness wishes to you! Congrats!
Phyl
-
Phyl,
Slap me a "fiver!" I'm really happy for your results. Actually, we are close in treatment time. It will be interesting to compare size and results with fractionized steriotactic radiosurgery, among those treated who belong to this forum. If we keep a tight reign on the nerves which were being affected, size comparison change over time and current symptoms to date, we can monitor treatment results per team.
Yes, the Acoustic Neuroma tumor can just as easily "take-off/grow," as well as, shrink! Sadly, we have heard of failure cases for whatever the reason. All of us are subject to AN tumor change in size at any point of time and that is the reason for the MRI monitoring. (and of course, the medical study for doctors)
Keep in mind that medicine is a "business" more than ever these days and always get more than one opinion before, taking any drastic measures.
I thank all people taking part in this discussion to help others and to see a visual study via reading and the bar graph. Please do keep posting any personal data you have and share your story. We all benefit from your information.
True, if my shrinkage continues over time it will most likely be significantly less. I will be happy with that.
At my current size and might I mention shape of the tumor, I experience occasional vertigo, tennitis, short-term memory loss, exacerbated patience under stress, (which facinates me enough to open a discussion here on this thread regarding, observing the size of people's tumor who noticably experience loss of "mental control" under duress) and sometimes swallow issues related to the problem of the remaining tumor.
Palace
-
My nasal passage opened for a short while last night. I'm thinking of canceling the nasal surgery. My throat is somewhat better. Now that I'm over the three year mark of Cyberknife and lost almost all my hearing on the right side, the tennitis is much louder. I'm having stabbing pains in my right AN ear again, just like before the Cyberknife treatment.
-
Hi Palace,
I am 4+ years past my GK and yes the tumor has visibly shrunk. I wanted to check whether if you have any stabbing pain in the forehead between the eyes?
My hearing too has almost gone and I am living with the musical loud tinnitus.
Shekhar
-
Hi Everybody,
I found this thread very interesting and comforting as I am headed for GK treatment hopefully soon as this W and W business is becoming very annoying. Anyway, my case is a little different as I have a meningioma, I hope the same effects of the treatment apply. The neurosurgeon did not give any indication as to why it wouldn't but there is more data on ANs than meningiomas in the acoustic area. If anybody has any information to offer I would appreciate it.
I am glad for everybody's success so far.
Vivian
-
Hi Everyone,
I'm very pleased with the Cyberknife results and that I don't have to have my MRI every six months anymore. (once a year)
I've got other things going on now. I had two nasal surgeries yesterday. This is way more painful than I thought it would be.
Now, I'm up to 22 major surgeries and counting. When the ENT doctor looked down my throat the other day, he saw a lump/growth. If it's not gone by mid-Feb., then I'll have a biopsy done. The doctor still thinks it's from acidic liquids and acid type of foods. I will have to give-up coffee, wine, tea, acidic fruits and veggies.
We do need our healthy foods!
Palace
-
vivian,
I seem to have similar issues(because of meningioma) but nuero sorgeons said no to GK, as that may cause more issues.
Is it because its over 2 cm threshold ? Mine is 2.7X2.6X2.5cm - no growth after 6 months), No facial or hearing (>95%) issue.
I am on W&W per Doctor's advice
-
I'll chime in:
My tumor (dimensions over time are listed below in my signature) swelled dramatically (33%) in volume at the 5-month mark post-CK. But six months later (11 months post-CK) it had shrunk 59% in volume from its peak size! At the 17-month mark, it had shrunk a little more along the oblique transverse axis.
Dr. Chang told me my rate of shrinkage at the 11-month mark was remarkable and that it normally took 5 years for an AN to shrink that much (not all do) after CK.
Conclusions:
1. Early dramatic swelling is no indication that shrinkage -- even dramatic shrinkage -- won't happen later on.
2. Shrinkage can occur in some cases within the first year post-treatment.
3. Shrinkage can continue for several years after treatment (according to Dr. Chang).
Best wishes,
TW