Numbness , weight gain and life after chemo

Jeff148 said:

Nearing the finish line!!S

I know how it feels when you are getting close to the end of chemo!! You dread the chemo but are excited to get closer to the last one. The last few kicked my butt. However, I've only had minimal numbness so I can't really address that. It has gotten a bit better over the past three months. I only gained about 10 pounds but it was from force feeding because I was afraid of losing weight. It came off as soon as I started eating normally and exercising. Took about 6 weeks. As for how life has changed, I treasure every day even more. It was hard to get back in shape. But just take it slow and set realistic goals. At the same time, challenge yourself. I'm shooting for four months to be back to where I can run and swim like I did before.  I'm defnitely more spiritual now. God keeps me at peace so I'm really not worrying about relapse. If it happens, I'll battle again. The main thing is, i just enjoy feeling good. I smile at little things a lot more and feel more empathy for those that are sick. 

Hi Natasha, i suffered with those same symptoms; its called peripheral neuropathy, and u need to tell ur onc asap as they may need to adjust the dose of one of ur medications. Think its the viblastine, but Max will know 4 sur. :-) I was told that that sensation was the nerves in my hands and feet dying. That is y they like to closely monitor u to make sur there isnt going to b any permanent nerve damage. It shouldnt go unchecked as it can sometimes be permanent.

I gained about a stone in the last month or so, mostly due to scanxiety! lolz. Ive loads of energy now and only went back to my ladies' bootcamp this monday. :-D today will be my 3rd workout in over 2months!!! Stuff hurts but its gr8 to hav some of my freedom back.

So glad ur chemo is almost over!!!! So cheering 4 u!

Amanda

Natasha,

Glad you are near the end of the abvd marathon !  ABVD and r-abvd do not contain any steroids, so I looked at your bio, and you mentioned Dexamethasone, which is a form of steroid.  I never received any form of steroid during my treatment so have no personal experience. What is very commonly given in the NHL combos of course is Prednisone (it is in CHOP, EPOCH, and many others), and I have read where many patients on that did experience some weight gain.  I lost 15% of my body weight, which is closer to the normal experience for just lomg-term  r-abvd.

Regarding the neuropathy (numbness in the hands and/or feet).  This is very common in high dose abvd, and yes it is from the Vinblastine (Vincristine is very similiar in CHOP, and does the same thing).  It varies usually with dose, and since you did 12 infusions, the numbness is not surprising.  I got severe neuropathy: my feet would go numb up to my waste at times. My hands were less severe, but they too were often numb to the wrists.  It makes turning a page in a book and other things very difficult. I still have a lot of trouble typing or keyboarding, especially on a smart phone. There are known cases of people having their entire body go numb (see link I provided below).

Chemo and diabetes both can cause neuropathy. They are slightly different, however, and although there are drugs for diabetic neuropathy, there are no drugs that I am aware of for chemo-induced neuropathy. The labels explicitly state that the diabetic drugs do not work on chemo; the way the disease is caused differs.  In chemo, the sheathing (insulation) around the nerves is sometimes burnt off by the drug, whereas in diabetes the lack of bloodflow damages the nerves (similiar to how diabetes causes amputation to be required in severe cases). Think of the nerves as extension cords in your house: If the insulation is worn of , the leads short out together and "spark." That is more or less what happens in neuropathy.

I learned all of this because I was in a nationwide clinical trial for an anti-depressant-based cream that was supposed to possibly treat neuropathy caused by chemo.  It failed the FDA, and what I used did no good at all.

What doctors and the medical sites say about chemo-induced neuropathy is the following:

Severity USUALLY diminishes over time, but this can take (in some cases ) months to years. Some cases go away QUICKLY, and some NEVER go away.   Most patients are somewhwere in between.  My feet still stay numb almost alll of the time, five years later, especially in the cold, or if I walk a lot.  I also have RLS (restless leg syndrome) all the time now.  My hands stay numb pretty much all of the time.  But, my symptoms have reduced a lot since five years ago, when I could not feel my feet at all, and sometimes could not feel my lower legs.  When I started chemo my doc gave me a warning sheet about neuropathy, which said that if you get it, do not walk barefooted.  I asked about this, and the NP told me that some cases are so bad that people have stepped on nails or glass and did not know they were bleeding....

Hot baths, massages, creams help some people, but are not considered curative. They do nothing for me. 

Vitaman supplements and diet have no curative effect, at least the last time I read on this subject, but that has been a few years ago now. Perhaps someting has been/will be developed.  It is plenty umnpleasant and affects quality of life a lot.

From what you describe it sounds like you have a pretty mild case, which might mean that it will go away faster.  My feet stayed numb all the time by my third infusion, so it did me a lot worse that it has you thus far.

I hope it goes away very rapidly in your case !  Very llikely it will,

max

Vinblastine:  http://chemocare.com/chemotherapy/drug-info/Vinblastine.aspx#.VIINue8tC70

Neuropathy: http://chemocare.com/chemotherapy/side-effects/numbness-tingling.aspx#.VIIOHO8tC70

I note that this link regarding neuropathy does not list ANY drug treatments available, but does suggest that B-complex vitamins might help.

.

I am just now losing the 30lbs. I put on during chemo that started march 2013. I too had neuropathy that stopped not long after I ended treatments. Rocquie told me to take Alpha Lipoic Acid and it was the best advice ever given. I have worked my butt off to lose this weight, it seems to stay on for quite awhile. I guess it all depends on your age, diet and activity level.

Best Of Luck

XXXOOO

Carie

girliefighter said:

Weight Gain

I am just now losing the 30lbs. I put on during chemo that started march 2013. I too had neuropathy that stopped not long after I ended treatments. Rocquie told me to take Alpha Lipoic Acid and it was the best advice ever given. I have worked my butt off to lose this weight, it seems to stay on for quite awhile. I guess it all depends on your age, diet and activity level.

Best Of Luck

XXXOOO

Carie

Hi Carie,

Sounds like ur doing really well. Awesome!!!

Im trying to workout 5days a week now. My energy returned pretty much right away after last bout of neutropenia. Just need to discipline myself when it comes to diet, as i was  'treating' myself and now my sweet-tooth has returned with a vengeance

Take care of urself. love the pink gloves

xoxo

Amanda

djduganne said:

B-12 INJECTIONS FOR NEUROPOTHY (NUBMNESS AND PAIN)

Ive Been doing B-12 Injections for years to help manage Neuropothy caused by both CHEMO (still on ABVD for one more month) and AIDS drugs Ive been taking forever... 

It does help. I usually give myself an injection every 2 weeks, as prescribed by my HIV Doctor. Hes the only one that ever suggested it, and it works.

Hope this help?

D

I take a B-super complex multi daily.  MY NP told me years ago I needed it for the B-6, and the B-12 is a super energy boost.  I also did the "abvd" thing in 2009-10.   I am glad you have joined here, since your story about getting over Stage 4B so rapidly is remarkable.

max