Author Topic: Post CK swelling-need support/info  (Read 19172 times)

fbarbera

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Re: Post CK swelling-need support/info
« Reply #15 on: June 01, 2008, 01:00:03 pm »
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 

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #16 on: June 01, 2008, 11:13:25 pm »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

fbarbera

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Re: Post CK swelling-need support/info
« Reply #17 on: June 02, 2008, 09:29:10 am »
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





 






Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #18 on: June 02, 2008, 11:57:33 pm »
Thanks for your comprehensive post, Francesco. It is a huge help.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #19 on: June 04, 2008, 08:05:54 pm »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

sgerrard

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Re: Post CK swelling-need support/info
« Reply #20 on: June 04, 2008, 08:28:20 pm »
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
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.

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #21 on: June 04, 2008, 09:21:11 pm »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #22 on: June 07, 2008, 01:19:25 am »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #23 on: June 07, 2008, 01:22:04 am »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #24 on: June 08, 2008, 02:11:59 pm »
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

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

L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #25 on: June 08, 2008, 02:28:25 pm »

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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

sher

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Re: Post CK swelling-need support/info
« Reply #26 on: June 09, 2008, 11:06:11 pm »
Steve,
What were your side effects at 3 months?
Sherry
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

sgerrard

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Re: Post CK swelling-need support/info
« Reply #27 on: June 09, 2008, 11:29:33 pm »
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

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.

fbarbera

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Re: Post CK swelling-need support/info
« Reply #28 on: June 10, 2008, 11:26:03 am »
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

Tumbleweed

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Re: Post CK swelling-need support/info
« Reply #29 on: June 11, 2008, 12:39:24 am »
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
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08