In a message dated 96-07-10 01:15:08 EDT, you write:
<< Subj: long term side effects from chemotherapy; long term survivor
Am interested in peoples experiences with long term side effects (5+
years post chemo), especially from vincristine, adriamycin, bleomycin,
cytoxan, matulane, prednisone or any combination thereof. Would like to
hear from anyone who has experienced neuro-muscular difficulties,
including numbing in extremities, tingling, occasional sharp pain, muscle
pain, isolated hot flashes, bone or joint pain or panic attacks. If
you've experienced these symptoms, what has been the response or
explanation from your physician? How if at all have your symptoms been
treated? How did you get your physician to take your concerns seriously?
What literature, if any, have you found on the subject? What have you
found on your own that ameliorates or aggravates your symptoms? What
other side effects have you experienced that I have not mentioned? How
long was it after your chemo that you experienced negative side effects?
Thanks.
>>
adriamycin,cytoxan,
neuro-muscular difficulties, including numbing in extremities, tingling,
occasional sharp pain, muscle pain, isolated hot flashes, bone or joint pain
or panic attacks.
all of the above. None of them have been attributed to Chemo except the hot
flashes because of chemo induced menopause. I've been diagnosed with
fibrositis, fibromyalgia syndrome, for those undiagnosable pains and cramps
everywhere; neuromas in my feet for the spasms there and arthritis in every
joint in my body including spine with 5 degerating discs. Panic attacks
supposedly were a part of my now being diagnosed as Bi-Polar. Hot flashes a
part of chemopause and tamoxifen.
Physical therapy, muscle relaxers, klonopin and imipramine along with
exercises were given for the muscle pain and spasms. Trigger point
injections, massage, and mayofascial release therapy helped some but hurt
like the devil. Cortisone shots and surgery on both feet didn't help a whole
lot. In fact, that helped to make me even less active so that I gained
50lbs. Traction and moist heat as well as hot tub soaking for the arthritis
and for a time we've tried ibuprofin,relafin and daypro for the pain.
Because I am now cyclothymic/bi-polar, I take lythium and wellbutrin (I took
paxil for a year).
I didn't get my oncodoc to take me seriously except to write me referrals. I
tried on my own to find the right kind of doctor to help. Not until joining
these lists did I begin to connect chem with any of these things. Are they
related? Or is this just a theory?
No literature about it being related to Chemo. Plenty of literature about
the individual disorders as diagnosed.
Medication helps somewhat. I quit my job because of the depression, panic
attacks, pain involved with my feet and back, difficulty walking, extreme
weight gain, embarrassment of incontinence and stress of commuting to DC -
and now my breast cancer has metastisized to my lungs so I am embarked on a
new struggle. I have also found that my mental acuity is not what is was and
my memory has disappeared.
The hot flashes began immediately because menopause began with the first
treatment. The incontinence gradually got worse until even adult diapers
were not sufficient four years later! The major pain probably began within a
year and became critical the 2nd - 3rd years.
Because I am not working or under as much stress, medication, for the most
part keeps everything bareable and manageable. I sleep in the recliner or
propped up at a 45 degree angle with pillows under my knees. I try to
remember to do my stretching exercises as often as possible along with gentle
in the pool and hottub. I still can only walk short distances not only
because of my feet.back and weight - now also because of my breathing.
Because my daily existance was depressing, when I received the diagnosis of
metestatic disease, I didn't have much of a will to fight. I am somehow
regaining that will by researching the possiblities and participating in
these lists.
Thanks for giving me a chance to sound off.
Nan
Hi, I'm new: 9yrs fr stage II dx.age 40, lump. AD/RT; 4 yrs fr MRM & CAF chemo & 4 yrs tamoxifen;now this! Sugested therapy of arimidex (H.T.) followed by Taxol (chemo), if no success; followed by possible HDC and ABMT/SCT. Looking for advice, information and other survivors who have perhaps experienced these treatments or survival prospects for stage IV from other victims. Mets to both lungs and chest lymph nodes. Liver and bones still clear on scans with the exception of possible place on rib recently fractured when I coughed (cancer or osteoporosis, Docs don't know!?!) Chemo instantly knocked me into menopause. Hotflashes, night sweats extreme during chemo. Incontinence (diaper time for sure, and not at all like that old tv star makes it sound). Real problem with memory and weight gain since Chemo and all of the meds I've been on in the last 4 yrs:Imipramine, Klonapin, DayPro (off now); tamoxifen 4yrs stop/began arimidex; Ibuprofin; Paxil/switched to Wellbutrin & lithium (bipolar). I quit work Sept. '95 due to panic attacks, stress of commuting from No.Va. to D.C.; stress of schedule between demanding church, work, needs of family, Doc app'ts,p.t. & phsyc.t.! I just couldn't handle anything so I crashed. Was just regaining a life when new diagnosis of mets to lungs (altho I suspected something after bronchitus and pnuemonia lasted all winter!) Today is my 50th birthday and I've been so rotten to my family with my roller coaster moods since starting arimidex, I'll be surprised if they even speak to me! Married 31 yrs 9/25/96, husb - Jim, 51-R.CW4.USA;son-Tim-30, SGT.USA; m. Jean 4yrs-3 g: Jessica 9, Katie 3, Tabitha 10 mo.; dau.- Kathy - 26 & her son Michael 7 (live with us); son Brian - 21; Father-in-law - 83 (lives with us).
Nan
