It’s been just over 4 years since I originally posted on this website that I was having neurological issues with my hands/feet from the chemo – tingling/numbness/clumsiness/stinging/pain. It has continued to worsen over the years, and about the last 8 months has gotten extremely more debilitating.
I have gone through physical therapy, MRIs, CAT scans, EMG nerve conduction tests, massage therapy, and multiple doctor visits. Final result is that I have a RIBP [Radiation Induced Brachial Plexopathy] and CIPN [Chemotherapy Induced Peripheral Neuropathy]. Neither of which is reversible.
The biggest culprit from the various chemo drugs come from vincristine (1984 for Hodgkins Disease) and taxotere (2006 Breast Cancer). The radiation I received for the breast cancer in 2006 overlapped areas where I had mass upper mantle radiation treatments for the Hodgkins Disease. The mass upper mantle radiation from the 80’s is what caused the Breast Cancer 22 years later.
The nerve damage is severe in the upper torso – shoulders/neck/back/arms/hands – additionally the damage extends into my toes/feet/ ankles/lower legs.
The numbness/tingling/stinging/pain is cruel and relentless. Feels like bare electrical cords are running through my body parts, non-stop 24 hrs a day. The weakness from muscle loss is debilitating.
I am to the point with the nerve damage where my right hand is basically like a rubber Halloween hand – flimsy, no strength in the fingers – no coordination – sensory feeling is mostly nonexistent, except severe pain from heat/cold and constant 100% of the time needles/pins. The muscle atrophy is very severe – muscle tone is gone – if I place my hands next to each other the right hand is about half the size in width as my left. Unless I actually look at my hand, I don’t know if my fingers are bent, or straight. They always ‘feel’ like they are bent or curled under, even when they are not. I reach into something and often bend my little finger back or out to the side without even realizing it.
My forearm is about the same in size to my left. Noticeably smaller from muscle loss. The upper arm is stronger, but definitely weaker than the left. I am a right handed individual by birth – however, I have now changed my dominant functions such as eating, drinking, writing, number typing, keyboard typing, holding, carrying all to the left.
My shoulders and neck sometimes feel so weak and painful I can barely hold my head up, and need to lie down till it rests enough to continue on.
My left hand/arm/shoulder is also affected with the damage. And as I am finding, the more I rely on my left hand, the worse it too is becoming. Oddly, with this nerve damage, “the more you use it, the more you lose it” applies to muscle tissue. In the undamaged body world, the nerves feed the muscles. When the nerves are damaged, they can no longer feed the muscles enough to remain useful and strong. I am dropping a lot and having typing/mouse and strength/coordination issues, along with increased stinging pain in my left hand/fingers/arm than before.
I now have a Physical Medicine Specialist MD who is at least understanding and informative. I have found over the past 4 years that the medical profession is basically unable to correct this type of damage. They can provide various drugs to mask the tingling symptoms and pain, but unable to stop the progression of nerve and muscle cell damage. I’ve tried a few types [Neurontin, Lyrica] with no benefit. Currently I’m trying Cymbalta low dose – I notice an ever so slight decrease in the sensitivity/pain to my right palm. But nothing dramatic. Sleeping is tough – I wake many times a night with discomfort and pain. Ambien helps me to actually fall asleep initially, and then get back to sleep after the multitude of wakening events – but not always –some nights are worse than others.
I’m finding it more and more difficult to continue working – difficult physically and mentally. But I push through it the best I can, as we all do when life challenges us. Driving has been ok – I find it gets tiring the longer I drive from muscle strain in shoulders, hands and arms.
Narcotics are not an option for me to help with pain. I am allergic to them – all of them – including Tylenol and Ibuprofen which cause nausea and dizziness – I have more side effects from all pain type meds then can be tolerated, even with anti-nausea drugs. The pain meds, and the anti-nausea drugs, also affect my nerves and I have tremors/shake, like I imagine someone would going through a mild detox event. Can’t stop arms/legs jumping and twitching – and then add vomiting – makes it easier to deal with the pain, then the side effects from the pain meds.
Chemo brain runs rampant – I would tend to believe 100% of chemo patients suffer from that.
Oncologists forewarn us that the chemo drugs not only save our lives by zapping the cancer cells, but also damage the good cells needed for quality of life. As the patient, our decision to save our lives and survive is strong – worry about the other stuff later if it happens.
The chemo I had in the 80’s and 2006 included Adriamycin – helped kill those cancer cells, but resulted in Cardiomyopathy and Congestive Heart Failure. I have had more than the allotted dose of that type of drug for a lifetime.
Chemo and radiation have saved my life twice – I am tremendously grateful for all the research and trials that have provided the level of knowledge, skill and testing that has been done thus far. I didn’t write this posting to whine or complain – I post it to help others know they are not alone – and to be heard in the research world. If this one posting can help one other person, I am happy – if it can help the thousands of others who may need cancer treatments in the future, I’m ecstatic – I’d somehow find a way to do the Snoopy-nose-in-the-air-happy dance-all around the world!
Sometimes it appears to me that we have so much focus on fighting and killing the cancer, that the quality of life for the patient is forgotten in the war.
I’ve done a lot of internet research and doctor/patient discussions to find most of the same answers – everyone responds differently to the chemo, ranging from some who have no noticeable nerve damage, to those who are incapacitated. Many of the internet search results are websites trying to sell various vitamins and supplements – nothing that I hold a lot of faith or trust in – just another way of taking advantage of the disadvantaged. There are websites that offer products to aide with performing day to day functions for those who have become one handed. They have some very helpful gadgets available. I have found this particular website beneficial - http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm
What I cannot seem to find are any kind of statistics on how many people are affected by the neurological side effects – based on what I’ve read posted by many, the numbers must be high. How many more are the “unheard”?
I believe that in numbers we may be able to get some attention. Attention and focus to help direct additional funding to not only kill cancer cells – but kill them without damaging the patient’s quality of life.
How many of us are really out there? Has there been any studies or clinical trials? There may be, and I just haven’t been able to find them. Anyone out there know? Any groups already established for those suffering from the neurological side effects caused by RIBP and CIPN?