Author Topic: Chelsea Update-Regrowth  (Read 3511 times)

chelsmom

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Chelsea Update-Regrowth
« on: January 27, 2009, 10:42:51 pm »
Hello To All,

For all of those that are not familiar with Chelsea's AN story, maybe it's in the archives, she had a very large AN with brain stem compression and hydrocephalus.  She had several surgeries in the summer of 2006 with many complications which kept her in the hospital for 3 months. There was approx. 2cm X 2cm X 2.7cm of the tumor left behind because the tumor itself was very unusual as it was as hard as a rock and stuck to her brain stem area. About a month after leaving the hospital she had 28 sessions of FSR in hopes it would stop the growth.  So here is what has been happening.
 
It has been a while since I've posted any news on Chelsea.  The last time I posted an update with how well she was doing, June 2007, she ended up in the hospital within a few days with post radiation swelling that was making her very sick.  Since then she has been doing great and was hoping to put this all behind her. She has SSD and was fortunate not to have any real facial or balance issues to deal with after her recovery.

Well, in early fall she started her second year at the University and was feeling extremely fatigued.  By November she was having increased head pain and by the end of Nov. she was throwing up off and on for about a week with terrible headaches and has lost 20 lbs since mid-Nov.  We called the neurosurgeon and after discussing her symptoms he felt that it was not due to her shunt.  So we figured she probably had a good case of the flu and was stressing over finals.  Her neurosurgeon wanted to schedule an MRI in Jan. and check on things.  Before her scheduled MRI could happen we had to take her to the ER as the pain had become unbearable.  That was on Jan 4th.  They did an MRI and reset her shunt to a different setting and sent her home.  That seemed to do the trick.  Her headaches were manageable with vicoden/asprin but she still had some nausea and dizziness.  We went for her follow-up last Thursday and got the bad news. The MRI report shows regrowth.  The measurements are 2.7 cm X 2.5 cm X 3.9 cm. They can also see mass effect on the 4th ventricle. She had an MRI in Aug. 2008 for the radiation doc and there was a slight change but it fell within the range of +/-2mm margin and the tumor looked stable. He felt that she could repeat the scan once a year instead of every 6 months and we were on our way.  I guess this growth really surprised them too. 

Of course we are in shock.  They are going to have her do another MRI in May and at that time we'll figure out what to do.  Chelsea does not want to introduce anymore radiation to her body.  She is only 20 and she is afraid of the possibility of secondary cancer due to the treatments.  Besides, the size of the tumor might not allow her to be a candidate anyway.  The neurosurgeon felt that another resection surgery might be necessary, maybe in June after she gets out of school.

So, is there anyone out there that has had a failed radiosurgery/radiotherapy after resection surgery? 

Also, has anyone heard from or about Taylor lately?  I last read that she also was having regrowth and was going to do radiation during her Christmas break.  I emailed them but have never heard back. 

Could these young ones go through much more?????

Michelle

Dfcman

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Re: Chelsea Update-Regrowth
« Reply #1 on: January 27, 2009, 11:14:54 pm »
Michelle,

My heart just sank when I read this post.   I have not been on here in awhile, but the Chelsea regrowth update made a red flag go off in my head.

I haven't talked to Chelsea much lately. Just a little bit here and there.  We have not had time to talk about anything serious.

I am concerned...How is she doing?  Like emotionally?  Have all the headaches and vomit spells stopped?

I'm sorry I don't have much more to say but I am understandably curious and I will continue to ask how she is.


Sincerely,
Chris
Son of Chrissmom
23 Years Old
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5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06

ppearl214

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Re: Chelsea Update-Regrowth
« Reply #2 on: January 28, 2009, 06:51:16 am »
Michelle,

I don't know what to say? As you know, been following Chelsea since day one through the whole process and was hoping that things were coming along nicely.  I offer hugs.... I cheer her and you all on (you know I do that!) and most of all, offer love and support during this time.  Please keep us updated (or maybe Chelsea will log on as well...) on how she/you all are doing. I haven't heard anything lately about Taylor either.  Hoping she logs on soon as well.

Please hang in there... my infamous huggles to you and Chelsea and all.  I will look for further updates.

with thoughts, prayers and love,
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

wendysig

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Re: Chelsea Update-Regrowth
« Reply #3 on: January 28, 2009, 09:44:02 am »
Michelle,

I can't be of much help but wanted to say how sorry I am for what Chelsea and your family are going through.  You will all be in my prayers.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
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Pooter

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Re: Chelsea Update-Regrowth
« Reply #4 on: January 28, 2009, 10:08:13 am »
I also want to offer my prayers and hopes for Chelsea.  I didn't know very much about her story.  I'm extremely sorry about the regrowth.  I agree that little ones shouldn't have to endure all of this at such a young age.  Keep us updated on her progress.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

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chrissmom

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Re: Chelsea Update-Regrowth
« Reply #5 on: January 28, 2009, 12:09:47 pm »
Michelle,

My heart goes out to you and Chelsea.  As you know, we are kindred spirits, having been thru the terrible summer of 2006 together.  I dread the possibility of tackling those problems all over again.  I wish I had the words to comfort you.

I feel the anxiety everyday.  Chris was put on yearly MRI's too.  It worried me because I know that AN tumors are more aggressive in younger people.  His yearly MRI is coming up on March 2.   I'm worried now.   He has a small remnant left that we are closely monitoring. 

I know it feels good seeing them go off to college again and watching them get their lives back on track.  I also know that the thought of going thru this again is always there too.  Believe me, I know the feeling.

I wish you well.  We think of Chelsea often and pray for all of you.  Chris is keeping in touch with Chelsea.  They have both been thru so much and can easily relate.

Thanks for posting. Please  keep us updated. 

Good thoughts and hopes always....

Rita


Jim Scott

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Re: Chelsea Update-Regrowth
« Reply #6 on: January 28, 2009, 01:08:32 pm »
Michelle:

As another 'veteran' of a 2006 AN surgery and follow-up FSR, albeit minus the complications, I empathized with Chelsea's tribulations and, as a parent, with your anxiety as you shepherded your daughter through the maze of medical procedures and lengthy hospitalization as well as her slow but steady recuperation. Chelsea's new symptoms and the possibility of a re-growth is clearly daunting but with the resilience she has shown, your dedication and abundant love for your child along with the prayers of so many people being said for you both, I expect that, although the clouds may seem thick for a time, they'll eventually part and Chelsea will once again be able to function as the bright, resourceful young woman she is, without the AN issues trying to drag her down. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sue

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Re: Chelsea Update-Regrowth
« Reply #7 on: January 28, 2009, 01:45:23 pm »
Oh my, I am so terribly sorry to hear about this.  :( I do think about Chelsea and Chris and Taylor and I hoped that everything was okay with them and that these young 'uns were just going about their business as usual.  So, to hear about this re-growth makes me very sad.  I can understand how frustrating this is.  I will keep her in my thoughts and prayers.

Please give Chelsea a big hug and a kiss on the forehead from me.

Sue in Vancouver, USA
Sue in Vancouver, USA
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Diagnosed 3/13/06 GK 4-18-06
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http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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ChelseaR

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Re: Chelsea Update-Regrowth
« Reply #8 on: January 29, 2009, 01:05:27 am »
Hello Everyone! I haven't been on in a while BUT i saw what my mom wrote and I saw the responses and I just wanted to say thank you to everyone for the continued support! I love you all!

My mom talks about all of you all the time and I hope everyone is doing well!

Thanks again,
Chelsea
Diagnose in June 2006
6+ cm
20-25% still there
Removed after 2 surgeries
went to UCLA in California

sgerrard

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Re: Chelsea Update-Regrowth
« Reply #9 on: January 29, 2009, 02:20:38 am »
Chelsea, what a lovely post. I hope your next MRI shows it was just a bunch of swelling up, and all is well. Or that if you have to have another surgery, it will be quick and go perfectly. Perhaps I should extend my customary offer to you as well, now that it really means something: may I knit you a hat? :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Brendalu

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Re: Chelsea Update-Regrowth
« Reply #10 on: January 29, 2009, 05:55:42 am »
My prayers go out to you and Chelsea.  I'm also getting out my pirate sox and wearing them until we get good news.  Hugs to you both.
Brenda
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AN surgery 7/28/05
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Chester Strunk, ENT

nancyann

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Re: Chelsea Update-Regrowth
« Reply #11 on: January 29, 2009, 10:37:03 am »
To Chelsea & Michelle:  You are both also in my thoughts & prayers.  This is easier said then done,  but try to keep a peaceful heart through all this - it helped me alot to repeat it to myself (still do when needed !).
Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
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right facial paralysis

chelsmom

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Re: Chelsea Update-Regrowth
« Reply #12 on: January 29, 2009, 10:48:47 am »
Thank you all for your kind words and support.  It's been a week now since we got this news and the reality is sinking in that surgery in few months is very likely.  I can feel the strength returning to my soul that helped me help Chelsea get through this in the dreaded 'Summer of 2006'.  We will fight this tumor and win.  Chelsea's doctors are the greatest and we have every confidence in them and appreciate their loving concern for her welfare.  

Chris-thanks for getting in touch with Chelsea.  I think it's great that you guys have become friends.  I know that she has said that when it comes to this whole AN thing that her fiends are and have been very supportive but you know exactly where shes coming from because of your shared experience.

Rita- I know the anxiety we have with the unknown.  I will be keeping positive thoughts for Chris' upcoming MRI in March.

Jim- you really should start a writing career.  You write so beautifully.  Since you and Chelsea had very siimular experiences I was wondering if your doctors ever discussed with you the possibility of failed FSR and what they would do for you if this happened?

Phyl, Sue, Brain, Brenda, Wendy, and Steve- thank you for your continued support for all of us here on this site.  

We'll keep you all updated as we move forward.

With all my best,
Michelle

Jim Scott

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Re: Chelsea Update-Regrowth
« Reply #13 on: January 29, 2009, 11:18:49 am »
Jim- you really should start a writing career.  You write so beautifully.
 
Thank you very much.  I'm flattered and, more importantly, hope my words are of some comfort.

Quote
Since you and Chelsea had very siimilar experiences I was wondering if your doctors ever discussed with you the possibility of failed FSR and what they would do for you if this happened?

Frankly, no - and I never asked.  I was told by the doctors involved (neurosurgeon and radiation oncologist) that this approach had been 100% effective on every patient on which it was performed , so I cheerfully went with that.  So far, so good.  However, Chelsea's experience does give me pause.  I will certainly pose this relevant question (regarding regrowth) to my neurosurgeon when I have my annual MRI and examination later this year.  I have to add that my last MRI (6 months ago) showed definite necrosis and some slight shrinkage.  I have no outstanding AN-related issues.  I hope and will pray that Chelsea's prognosis  is positive and no surgery is necessary. 

Addendum:  I checked with my wife who, in some respects, has a clearer memory of my AN experience than I do.  She said that we did broach the subject of a possible regrowth scenario with my neurosurgeon.  He said that, although that hadn't happened in over 100 of his AN patients undergoing the surgery/radiation approach, should re-growth occur, another surgery would be necessary.  He inferred that this was a remote possibility, at best.  So far, he has been proven correct.  I can only hope this continues to be the case.  :)

Jim
« Last Edit: January 29, 2009, 04:03:40 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Dfcman

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Re: Chelsea Update-Regrowth
« Reply #14 on: February 01, 2009, 01:59:01 pm »
Michelle,

Hi.  Thanks for the good luck wish.  I have ambiguous feelings about it.  I'm not letting it bother me right this minute.

My mother has told me several times how Chelsea understands my "instances" more than anyone in the world and how I am probably one of the few who can specifically relate to her.   It is hard for others to know what she has gone through/is going through.  I really feel the same way about Chelsea and that she understands me more than anyone ever can or will.  I never want anybody to see what I have seen and been through what I have experienced.  Although its not definite for me, the fact I try so hard to put this all behind me and see that Chelsea can't have that peace of mind, after so much strife, emotionally destroys me to no end.  She told me how it drives her nuts ,but she is dealing with it.   She is so strong.  Fact remains, that my past has made me strong ,but she is much stronger than I am.  I really look up to her as a source of inspiration.

My thoughts and prayers are with you,

Chris.

p.s.- I really love your attitude.  Life backs you into a corner sometimes and all you can do is push on thru it.
Son of Chrissmom
23 Years Old
AIM is the best way to contact me
5.3 x 4 cm tumor removed by surgery(2 times)
Dr. Arriaga and Dr. Baghai Pittsburgh Allegheny Hospital
Post Op as of 7/20/06