Re:RIBP & CIPN - Nerve Damage from radiation and chemo treatments
Thursday, September 08, 2011 4:53 PM
MSKCC Rehab - 4th Installment
It's been a couple weeks since I've left my new friends at Dr Stubblefield's Cancer Rehab Center. I was able to speak with Dr Stubblefield on the morning prior to leaving NYC. He talked to me about the MRIs I had earlier in the week. The total spine MRI showed no additional cancer or tumor activity. I do have moderate to severe stenosis at L2-L3 and severe stenosis at L3-L4. This is what affects my lower legs/feet/toes with weakness, pain and numbness/tingling. The MRI of my Brachial Plexus did not show any additional cancer or tumor activity. It did show that the bottom 3rd portion (nerves leading to the hand/fingers) has been severely burned/damaged by radiation. The middle portion (nerves leading to the forearm/wrist) have also been severely burned/damaged by radiation. The upper portion (nerves leading to the shoulder/upper arm) has been burned/damaged, but not severely. From the elbow to fingers will continue to get worse with pain, numbness, tingling, and muscle atrophy. Eventually becoming nothing more than a dangling appendage. Time frame is an unknown factor. The upper arm, should potentially remain stronger, allowing movement to some degree. It's not the best of news, but at least confirms all that has been occurring over the years, and more so over the past 12 months. Dr Stubblefield told me that my Brachial Plexus radiation damage was the worst he has yet to see... Overall radiation fibrosis throughout the neck and chest areas was also abundant. He said that my individual case shows just how radiation treatments can damage. In particular, the Hodgkins mantle treatments of the 80's, followed by Breast Cancer overlapping radiation. He said that he is going to change his presentation and related MRI slides at his upcoming conference to use my case, because it clearly shows the long term affects of the damage caused by the radiation. He told me that i am an incredibly strong woman, for he understands the results on every day life of this type of damage. He said to be able to do as much as I force myself to do is amazing in itself. This somewhat embarrassed me, and at the same time gave me more strength. I have always done what I have to do to endure and hang onto quality of life. The same as we all do. It's never ever been easy as all of you who have had these same symptoms well know. It felt good because finally, a medical professional who actually knows what the hell has happened, and understands what the hell we actually have, and doesn't look at me with that "deer in the headlights I don't know what to tell you" look. He also reached out to my oncologist here in TX to discuss. She in turn told him she will discuss with her radiology partners. Going forward, the more they understand the long term effects of overlapping radiation fields for patients with prior mantle radiation, the more consideration they can give to the individualized treatment plan. And the more they can give to the patient for combined Dr/patient decisions on their treatment plan. I was at my oncologist this week for my 5th year "cancer-versary" from end of treatments. November 17th is my 6th year from diagnosis mark. We talked specifically about the findings of my MSKCC visit, and her discussion with Dr Stubblefield. She was grateful for his call and indicated the new information was beneficial for her and the radiologist for treatments on patients with prior Hodgkins radiation. YAY!! Finally, recognition from the oncologist world! That alone is a huge leap in the right direction.
By the way, my overall visit with the oncologist was good! No obvious signs of recurrence.... A little lab work, and I was dismissed for 1 year! That's a HUGE step!
Now, I continue with the PT/OT plan established by the MSKCC Rehab group. I still have, and will continue to have, the intense nerve pain, and constant paresthesia 24/7.... That does not go away, or get better - no magic pill or treatment. I totally get the severity of my condition, and know it can't be fixed.
The entire journey to MSKCC was well worth the time, cost, EMG pain, and exhaustion endured. The last day there, I hugged Dr Stubblefield, and cried. Same thing with the PT/OT staff.
My anticipated results were - and the RESULTS
1. A clear understanding of what damage has occurred - CHECK
2. What to expect going forward. - CHECK
3. An actual plan of action - CHECK.
4. Physical therapy to help with range of motion. - CHECK
5. Occupational Therapy to help with day to day life adjustments beyond what I've taught myself. - CHECK
6. Pain/paresthesia relief. - UNFORTUNATELY NO
7. A better outlook on quality of life. - CHECK
Breast Cancer Survivor
double radical mastectomy - right tumors 5 & 7 cm - left contained pre cancer cells
100% Estrogen Positive
HER 2 Negative, 5/8 nodes, Stage III
8 chemo cycles - CAT (Cytoxan, Adriamycin, Taxotere) - first 4 Cytoxan Adriamycin; last 4 Taxotere - completed 05/23/06
33 radiation treatments - along right mastectomy scar and auxillary nodes - completed 08/08/06
Hodgkins Disease S