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After Chemotherapy questions

jansbear
Posts: 3
Joined: Feb 2004

Hello everyone,

This site has been so much help to me over the past few months, God Bless all that have posted. Now to my question. I finished my six chemos carb/taxol in Apr, still have variety of chemo related pains, lingering neuropathy, fatigue, "joint pain", ect. I try to walk at lease 2 miles a day and keep active, anyone know how long this will continue?

Thanks so much Jansbear

BonnieR's picture
BonnieR
Posts: 1549
Joined: Jan 2004

Jan, congratulations! It is good to have the chemo done. The neuropathy could go away after a 6 month period of time or not. Sorry to tell you but mine never has, my fingers are pretty good now but my feet and legs continue to stay bad.

Again congratulations. Bonnie

mopar
Posts: 1948
Joined: May 2003

Jan, so happy for you that the ordeal is over. But, as Bonnie said, the neuropathy may or may not go away. Mine lessened, I believe due to a regimine of Vitamin B6, L-Glutamine, and my exercise and nutrition program. However, I remember the pain very well. You are doing right by continuing to stay active. Basically, neuropathy is 'nerve damage' and it is claimed that nerves cannot repair. I disagree with that premise. So, continue on with what you are doing and we'll keep you in our prayers. If you need more info regarding what I mentioned, let me know.
Monika

ami0c
Posts: 3
Joined: May 2004

Finished my chemo about two months ago. For the last month my left leg has been bothering me. Aching. It is not contistant, no swelling, very intermittent. Same pains that I experienced with the chemo and a bit of tingling. I did have a horrible blood clot in that leg right before my surgery. Still on a blood thinner. It seems like anylittle thing I think that something horrible is happening. See both Dr.s next month. Thank you for the information. ami

groundeffect
Posts: 651
Joined: Mar 2003

Hi ami, Be sure to discuss the aching with your doctors. If you had lymph nodes removed during your surgery, you may have numbness at the top of your leg. My left leg was numb at the top, and I didn't know why until I asked. I noticed it because my purse would brush against it, and it annoyed me. I had many blood clots in my right leg before my surgery, which was diagnosed was deep vein thrombosis (DVT), which is a symptom of lower body cancer. With the cancer gone, hopefully you'll get by the clotting. I took blood thinners for over a year after my surgery.

I know it's hard to keep having to go in and test when you're on blood thinners. It adds to the routine of going to the doctor, and I felt that testing was helping me keep in a somewhat negative state of mind, so I'm glad to be done with it.

Are you exercising? If you're not, you should ask your docs ask what type of exercise would be good for you. I know it's good for helping prevent blood clots.

If the tingling you're feeling is from the removal of lymph nodes, don't worry. It will become less noticeable or go away entirely.

One other thing that might help is losing weight, if you're overweight. I weigh more than I should, and started going to Weight Watchers the week after I finished chemo. I haven't lost all that I want to, but it's got me eating much better food, and it's something I can do to help improve my health. My doctors heartily approve!

LynninRI
Posts: 9
Joined: May 2003

Hi Jansbear -
I finished my 6 rounds of carb/taxol in April 03 - I took L-Glutamine during treatment the entire time at the recomendation or the nutritionist at Women and Infants Hosp (RI) - that took care of the neuropathy. I don't know if it works post treatment but it is worth a question (it is rather expensive - at GNC with a discount it was $50 - but if it works post treatment go for it!) The fatigue and the joint pain were gone for me around January of 2004. I kept wishing for it to happen sooner so I'd push it and end up sleeping my weekends away. Exercise seems to be a big help for me - I did pilates during treatment (and Qi Gong) and now am doing 4 cardio workouts and 3 pilates classes a week. Keep your spirits up, the exercise (walking) will help rebuild your muscles and stamina - At the one year mark (end of treatment anniv 4/24/04) I felt better than I did before surgery!
God Bless you and keep up the good work, surrender to the fatigue when you need to and enjoy life -
Lynn in RI

gorget
Posts: 23
Joined: Feb 2004

Hi Lynn,
I started my treatments last October at Women's and Infants in RI (completing them in NH) - but no one ever mentioned the L-Glutamine for the neuropathy. I've learned to "live with" the numbness in my fingertips (I had 11 rounds of carbo/taxotere and am now on a maintenance protocol of just taxotere for the next 10 months) - but went out and purchased some L-Glutamine (500mg) at CVS (50 tablets for $4.99!!).
My question is, I didn't know what mg dosage was recommended to you. The label recommends one a day, but wasn't sure if you were told more was better.
I also do Tai Chi, and have kept it up during my treatments (when not too tired) which I have found very helpful - it takes the stress out of life for an hour. Am now also working with a personal trainer 2x a week to help me get my muscle strength back. It has helped me get through the treatments better too.
I agree that even just walking is very beneficial to keeping fatigue at bay. But you are right, you have to surrender to it when you need to.
I appreciate any info re: L-Glutamine dosage you can share. I'd love to do something to minimize this!
Congratulations on being done and going strong over a year later!

Be well,
Georgette

geismom
Posts: 1
Joined: Oct 2004

Dear Georgette,
I have a 19 year old daughter diagnosed with a very rare ovarian cancer. She was overdosed by nearly twice the amount on Monday, with her first chemo treatment. (Luckily I had bugged the dr. so much that he reran the creatine level, and realized his error.)
I have a wonderful contact dr in Boston who answers any and all questions that I ask him regarding my daughter's situation. When I mentioned the overdose, he first told me to give her 50 mg vitamin B-6, for just 3 days, to eliminate any possible nerve damage. But not to continue any longer, because that would counteract the effects of chemo. Since you are finished with your chemo, after the recommended waiting time to be certain that all the chemo effects are finished, I would ask your doctor if it would hurt to take the 50 mg Vitamin B-6.
Also, this boston dr. told me to give my daughter 30 Grams (not milligrams) of glutamine per day. Now, I have given her 20 grams, and that is definitely causing abdominal distress. I am going to attempt to give her smaller doses, hoping that her system will tolerate it better. She has not been eating, so she is probably absorbing this big time.
The powdered can recommends starting with 10 grams per day, and increasing to 20 over a couple of weeks. I don't know that taking 500 mg capsules will be of much use. The powder formula dissolves in water, and gets absorbed pretty quickly.
The can is pretty large, and it cost about $31.00. I think it would last a month. Considering that 1000 mg e = one gram, you wouldn't be getting much in a 500 mg capsule.
If I find anymore info, I'll be certain to post it.
I was excited to see that this product was being endorsed by other clinics in the treatment of relieving chemotherapy symptoms.
Does your personal trainer recommend a standard amount?
good luck.
Barbara

groundeffect
Posts: 651
Joined: Mar 2003

Hi, and I'm so glad to hear you're over chemo. I finished chemo in January 03, and had aches and pains that I dutifully reported to my doctors, and they told me they were probably all due to adhesions from the surgery. They all seem to have gone away now. I do seem to have joint pain on occasion, but in light of my age (50) and my sister's experience with arthritis, I'm willing to concede it's a possibility.

Keep up the walking - we all need exercise!

akenig
Posts: 7
Joined: Jul 2004

I have some good suggestions regarding your recovery, if you wish you can contact me: akenig35@hotmail.com

rosiegirl
Posts: 22
Joined: Mar 2004

Hi Jan, I am so glad you are finished with treatments. I finished June 1st of this year, isn't it a great feeling? I too have lingering fatigue, very little staying power. I'm supposed to return to my regular work schedule this week and am finding that six hours/day vs. the four I tried to work during treatments is still very taxing. Makes me feel wimpy! I'm trying to walk 2 miles a day, as well. Interestingly, I never experienced any neuropathy during treatments, but for the past three weeks, have been waking up with my fingers, hand, and forearm numb, tingling and painful - just my right side. Like many, always wonder if its chemo-related or something totally removed, like a pinched nerve or something. Also have continuing vaginal bleeding, but no cramps or anything. I was reassured to read some of your replies that say things don't really get back to normal until a year or so. More patience is needed, eh?

Good luck and complete recovery to you.

Jeanne

juneaugirl
Posts: 12
Joined: Aug 2004

Congratulations!! When I did my last chemo (12/30/04) I wanted to celebrate but all I had the energy for was going home and taking a nap. :) I, too, still have lingering side effects but they have lessened over time. The most annoying is the fatigue and neuropathy. But I woke up from surgery with sciatica so I'm not sure sometimes if the pain/tingling is from sciatica or chemo after effects. Probably some combo of the two. I also developed what appears to be arthritis after chemo and Celebrex has helped a lot. The fatigue makes going to work a bit difficult sometimes, but I worked during chemo so I use the same coping stratagies now. It's going to take time since nerves heal very slowly. B6 helps w/neuropathy and B complex might help w/fatigue. For me, having a future to look forward to helps lessen whatever else is happening. Life is beautiful!!

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