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Numbness , weight gain and life after chemo

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Good morning everyone!

Yesterday I had the first treatment of cycle #6 which is actually chemo # 11 and as usual every time I feel a little worse than before. My biggest concern is numbness in the bottom of my heels, I have some in my fingertips but it's not as bad. Sometimes it's painful to walk and it feels as though I was bitten by a bee ( I know the feeling because my grandparents were bee keepers and I stepped on few bees when I was young). It feels funny when I walk. My oncologist says it's because of the  Vinblastine side effects. I was more worriced about my type 2 diabetes but the blood test results for A1C were good so my question to you guys is how many of you have experienced something similar and how long does it take for it to go away? 

The other question I have is : did anyone gain weight from taking steroids and if so how long does it take to go back to your normal weight?

in two weeks I'll have my last chemo and I simply can't wait for all of this to be over. This past Monday I met with my oncologist and we spoke about what's going to happen after and he put me in such a good mood that I kept on smiling and making jokes with my husband. I asked my doctor when will the port-a-cat be taken out and he said in most cases people like to wait until their Pet scan comes back but in my case because the lymp nodes were visible and they disappeared few months ago then I could do it ..as early as middle of January because the chances of the Pet scan coming back (I don't know if the word for it is negative or positive) is almost zero. He was the biggest reason I took the bad news with such ease and was so optimistic from the start. Even at my worst and when I cry because I can't take the pain I never have doubts that my cancer is not cured. So either I'm silly and naive or just a positive person but time will tell.

Last thing, a question for all those cancer survivors: what to expect in the future, what did you find challenging or different? How is life now?

Thank you for reading and have a good day!

Natasha

 

 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

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. 

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

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

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Natasha,

I had chemo treatment including high dose chemo and autologous stem cell transplant (ASCT) in 2012. I got a little numbness (neuropathy) in my feet from the chemo. I think that now two years afterwards, there is slightly less numbness, so it can get better.

I did not gain weight.

Life afterwards is fairly good. I am a little (but not much) weaker and more tired, probabaly partly due to increasing age (I am 70).

I wish you health and luck!

Sten

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

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.

 

.

 

 

 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Hi Natasha, I'm so glad you are nearing the end of your treatments. My diagnosis is different from yours and so has been my treatment. My treatment was very hard on me and I had every side-effect in the book. I have been in remission for about 1 1/2 years, but I am still on Rituxan Maintenance infusions. 

I don't have the endurance and stamina I used to have. I get tired too easily for my comfort and it takes me longer to recover. I am hoping that will improve when I complete my maintenance. Meanwhile, I try to build up my strength as I can. 

May I suggest that you look into the supplement Alpha Lipoic Acid (600 mg)? It has helped many, including myself, with the peripheral neuropathy side-effect.  It is even often recommended for diabetic peripheral neuropathy. Be sure you check with your doctor.

The main difference in my life now than before my diagnosis, is in my attitude. I am much more grateful, compassionate, patient, tolerant, understanding. When I was so sick I was humbled by the nurses and medical staff taking care of me--the grace, mercy, and nurturing were so inspiring. Because of the care I have received, I have been volunteering at my infusion center. To see the hope in the eyes of people just embarking on their chemo journeys, when I sit with them and tell them I have been there too, brings me to my knees. And makes me realize that I am doing just fine. 

Body weight ebbs and flows, just like life. I wouldn't put too much importance on that. You have recently had a baby and you are going through chemo. I'm sure your husband, baby, and family don't notice. Just put on some comfy yoga pants. 

Much love,

Rocquie

 

girliefighter's picture
girliefighter
Posts: 232
Joined: Mar 2013

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

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

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

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Good morning!

As usual I'm awake at 5 am because of my baby and I don't mind it. I have never seen a happier baby (or maybe they're all like that?)! Every morning he has this huge smile on his face and he is my reason for fighting and wanting to live even more. I'm so excited and cannot wait for next week (in 8 days) to end this journey and start a new one, a happier one. I stayed strong for the longest time but now I decided to let go and let myself be vulnerable and stop tolerating pain and discomfort. Yesterday I took some morphine for pain and I slept for hours. I never wanted to cry in front of my mom or sister and now I finally did it. I know they are worried and didn't want them to see me like this but I'm tired, too tired to keep a brave face.... You all know how this chemo treatment makes you feel, maybe not the same for everyone but still (I'll be polite;)) not good!

Thank you for all your answers to my questions! The numbness is actually a little better this time around but the fatigue and body aches is something else. I can assume the last chemo won't be any easier but it will be the last one!!!! My husband and I are already planning on celebrating with a bottle of champagne which is already awaiting in the fridge. I hope the recovery won't take too long and I can go back to exercising like I used to so I can get back into shape and wear all my old clothes ( size small!) . I haven't worn a skirt or a dress since I was pregnant! I also can't wait for my hair to grow back the way I used to have it - long. I still have some left but about a week ago I had a morning meltdown and cut it short myself. I did a terrible job but luckily had it fixed the day of my last chemo. I told my hairdresser that I should be his first and last client who decides to get a haircut and then go for a chemo treatment, lol. :) I hate CANCER and what it does to us and the people we love but I have to say that it taught me to appreciate life so much more and enjoy every moment like there could be no tomorrow. Life is short but so beautiful.:)

I never expected that strangers will become my friends and my friends strangers. Even if we never met nor will we meet in person  it's funny how we all connected and care about each other. I don't read all posts on this site, mostly those I see any of your familiar names who welcomed me the first time I wrote here. I will keep you posted on my progress and definitely the PET scan results later on.

Thanks again for your support and advice and have a wonderful Sunday! :))

Natasha

 

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Hi Natasha, 

Keep on fighting and you will one day look back and be amazed at how far you have come.

I say that a lot but it's true. 

I've gained 16 lbs......Yep I'm frustrated but I know I can lose it after the chemotherapy. 

Be good to yourself and stay strong. 

 

Hugs

GG

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

I'm in allot of pain the last few days, something similar to how you feel after having a big work out and then you get muscle pain, except I didn't work out since I was 7 months pregnant! ;) Just like Jeff I'll try to be realistic and give myself more time to get back into shape (6 months). I love walking and I love exercising and I eat healthy so I hope I should have no problem losing weight but you never know what some medication can do to you in the long run. Amanda seems to have no trouble getting back into her routine and Carie worked her butt off so I'm very optimistic and excited about the future. As long as I have some stamina and felel ok, I will do everything in my power to be the way I used to be. Thinking about it makes me smile. :) I gained about 5 pounds so far but need to lose 15 because I didn't have a chance to lose all of it after the C-section. 

Carie , I know you said you didn't lose all your hair (I also have some left) so I wanted to ask you how long did it take for it to start growing back? I don't like myself with short hair, I look like a boy and although I like it on other women I can't get used to my short haircut. I've been using Neoxin since the beginning of my treatment and still don't know if it's the Neoxin or the way I react to chemo treatment but I will continue using it. What about you Amanda? Did you lose more hair?

Natasha

 

djduganne
Posts: 2
Joined: Oct 2014

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

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

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