On 4/27/2008
JackieB wrote:
Please forgive me for not answering promptly to your message. I am so very sorry about your mother.
My tumors started growing again 3 weeks ago plus 2 new nodules in my lungs. The trial I was in last year was a Phase 2, after several weeks of cat scans, blood tests, etc. I qualified for a Phase 1 Trial. The Phase 2 Trial kept me going for a year - then the oncologist gave my body a rest for 4 months or when the tumors started growing. (This rest was extremely important for my body and I realize it now.)
I am 68, my cancer was diagnosed Sept 25, 2006, and the treatments which I explained in my letter (which keeps growing and duplicating on this site for some reason) were hard on me. I was very healthy and very strong and independent when I was diagnosed. Last year has taken its toll on me but it gave me 1 1/2 years to be with my great-grandchildren, grandchildren, children, relatives and friends. I would not say last year was 100% quality year. But it had its good moments and memories.
This Trial I am on now requires me to go to Nashville EVERY week (which is a 3 1/2 hour drive from our home one way). Some weeks it will be for 1 day and some weeks it will be for 3-4 days. They are hoping to halt the growth of the tumors. We won't know if this treatment is working for about 4 more weeks, but last week my liver enzymes had dropped a tad which I hope is a good sign. I will be on the 2 oral chem drugs 2 weeks and then off 1 week. There are side effects and so far the worse one has been terrible fatigue and intense muscle pain. There are some more that I hope I don't get.(I am also only half as strong as I was when first diagnosed.)
I can not in good conscious advice you on what your 81 year old mother should do. Once I figured this horrible diagnosis out and realized there was no cure nor was it operatable I went into the Clinical Trial for 2 reasons. One of course was to buy me some time to get my affairs in order, the other was in hopes I could help them get closer to a cure for this horrible beast. They will eventually get a cure but it takes these trials to accomplish that and my oncologist Dr. Greco is an expert in this type of cancer and he has been working on this for 15 years.
I will know when the time is right to quit fighting and I will die with dignity with the help of Hospice and my Internist.
I know this probably isn't the answer you were wanting - death is a very private matter, and your mother is right to be concerned with quality of life. But only she and you can make that decision.
I will keep you and your mom in my prayers and please keep me posted.
Your friend,
JackieB
Hi, Jackie, my name is Terri and I guess I'm your neighbor as I live in East Tennessee. The reason I'm replying to this message is that you mentioned you are going to Nashville for a clinical trial. I just recently have been referred to Dr. Khan W. Li, a neurosurgeon, for a consultation on the spinal cord lesion that has disabled me since May. Now let me explain a little bit about my situation. I'm 54 in August, by the way. On May 4 this year all my lower extremities went numb. After weeks of MRIs of the head, lumbar, and cervical (which is how they found the lesion) and a referral to a neurologist, he diagnosed me with Transverse Myelitis, but he was convinced that the lesion is possibly malignant. So he ran more tests including a lumbar puncture to rule out Multiple Sclerosis, a PET scan, which showed a problem with my thyroid, and a fine needle biopsy of the thyroid. The FNB indicated a "follicular neoplasm pattern" after which I was referred to a hematologist-oncologist who referred me to a surgeon. The surgeon removed my whole thyroid on Sept. 13th, thinking that this was the primary cancer source, which turned out not to be the case. So now, until we can prove otherwise, I feel that I may be in the CUP catagory. We know that the lesion is in the spinal cord, and my neurosurgeon in Knoxville is wanting a tissue sample or biopsy or both, whatever he can get so we can start treating this thing. I've been waiting 2 weeks on this referral and I'm hoping there will be no more delays. I was wondering where you are going for the Clinical in Nashville? I'm like you, we're 3 1/2 - 4 hours away from Nashville. With my back the way it is, it's going to be tough to make that drive on Tuesday.
I know my situation is a little different than yours, but I can totally relate to the unknown primary aspect, and it scares me quite a bit, also my grown children. I've had to wait so long, it seems to get to this point and my symptoms are getting worse and adding on, like the peripheral neuropathy in my legs.
Hope you are doing well. Good luck with all your treatments.
Terri in Tennessee