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numbness finger tips with R-epoch

akaza-kabi
Posts: 6
Joined: Mar 2021

I've just finished 2nd cycle of R-epoch, now I'm experiencing numbness of finger tip (mild but no sign of improvement in several days). I was told this can get worse with repeated doses and can be irreversible.

has anyone experienced the same side effect? Did it go away? Should I ask doctor to reduce etoposide/vincrestine?

Evarista's picture
Evarista
Posts: 317
Joined: May 2017

This, unfortunately, is a potential side-effect of R-EPOCH chemotherapy.  Probably caused by the "O" component, which is the drug vincristine.

The "DA" of DA-R-EPOCH stands for "Dose-Adjusted". At the start of each round of my DA-R-EPOCH, my doctor reviewed symptoms that I was experiencing, including numbness and results from bloodwork.  The dosage of the vincristine was adjusted downwards or upwards based on those results and conversations. "Mild" after my second round was approximately what I experienced.  It did get worse, but not so much that the doctor wanted to change my dosage (on the other hand, my platelet and absolute neutrophil counts did have consequences). 

After completing all six rounds, I did have significant numbness is fingers and toes (= peripheral neuropathy).  Again, not so severe that they were dangerous numb, but troublesome nonetheless.  This has improved steadily over the 4 years since finishing chemo. Now I only have occasional episodes of hand numbness and it does not interfere with my activities to any significant extent.  So talk to your team and I hope that you have an easy time going forward.

akaza-kabi
Posts: 6
Joined: Mar 2021

 Thank you,good to know this can be improved。I called the doctors and they said they can reduce the dosage,but they can't predict what will happen next. I really hate uncertainty but it's the most common thing in cancer treatment.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3662
Joined: May 2012

akaza,

E's comments above are of course precisely correct.  It is almost certainly the vincristine (effects of vinblastine are identical).   Neuropathy following v is common, but degree of severity varies dramatically, as does recovery.  Depending on your particulars, your oncologist might or might not reduce the dosing.   I had severe neuropathy, lung toxicity, and other side-effects during treatment, but the doctor said my dosing could not be reduced, even after I lost 15% of body weight, so what the doctor will do is unknown until you share your symptoms.

With additional treatments, the neuropathy will likely worsen, but this is never certain.  Also, very generically, symptoms usually abate after chemo ends, but the time frame for every patient varies.   After six months of r-abvd, I was numb to the knees and elbows, and had almost no sense of touch in the fingers.  I went into a clinical study for treatments for neuropathy, and the nurse in charge said that she had known of patients whose entire bodies became numb -- an extremely rare thing.

Today, ten years later,  I still have numbness in the hands and feet, but it is much milder than it once was.   I still cannot unwrap those plastic covers at the meat or veggie counters in grocery stores, and cannot turn the pages of a newspaper without wetting my fingers.  Keyboarding or texting on a phone is a challange still today, and I have to look at where my fingers are.   But I am an outlier as regards what most patients experience.  Your symptoms will hopefully be much milder, and resolve quickly.

akaza-kabi
Posts: 6
Joined: Mar 2021

Thank you. I hope your situation can be better improved in the future.

I have to say you are a strong survivor. I would probably consider giving up if I know I will have so much "discounts" in later life. But seeing many people can live with it can be a comfort .

I'm an international student in US. Got this aggressive lymphoma during pandemic means I can't go home and no families can get here. Facing all the problems all by myself is really difficult. uncertainty feels worse than side effects themselve.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3662
Joined: May 2012

Ironically, COVID has shut down medical care for millions.   Cancer Treatment Centers of America has a commercial running, stating that 80,000 cancer patients have died due to restricted medical access and lack of diagnosis.   I do not know if that means in the US, or world-wide.    My own cousin died in December, from lung cancer.    She was diagnosed at stage 4, and could not get any form of oncology appointments in a timely manner.....the hospital said they did not "want her to get sick."    SHe lived a year after diagnosis, and at death, they had got her to ONE treatment.   ONE.

The American Pediatric Society said many months ago that so-called 'e-learning' is profoundly harmful to youngsters, educationally, socially, and emotionally.  School systems all over the nation are asking to defer standardized tests, because they know the kids have learned nothing.   Yet, states continue to want school closures, "for their welfare."   Studies early on in covid in Germany, Denmark, and elsewhere showed that there is virtually no COVID transmission in elementary schools, and our own CDC now agrees with this.   

We are living in Bizarro-Land.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3662
Joined: May 2012

May be an image of 1 person and text that says 'And Just like that, Nobody died of Natural causes in 2020'

Evarista's picture
Evarista
Posts: 317
Joined: May 2017

When describing your symptoms.  "Numbness" is one of those vague words that means different things to different people.  My "numbness" is probably not the same as your "numbness".  Therefore, when I try to describe the sensations in my hands and feet, I try to use very descriptive language. For example, instead of "My feet are numb", I say "My feet feel sort as if they are on fire.  Like that "ice burn" sensation that you get when you hold an ice cube against your skin too long."  For my hands: "Sometimes I get that tingling feeling that people get after their arms/legs have fallen asleep."  This is VERY different from "My hands are so numb that I would not feel it if I touched a hot stove."  This will help your medical team understands the severity of your symptoms.

It must be very difficult for you to be going through this without your family. For some support, may I suggest that you take a look at the Leukemia and Lymphoma website? www.lls.org  They offer real-time online chat sessions two to three times a week that are oriented specifically to the lymphoma/leukemia community.  They are hosted by a nurse or social worker familiar with our issues. I have found them helpful, especially as we are all more isolated these days. Also, if you look around on this ACS website, you may be able to identify a cancer-support center in your area.  I hope everything goes well for you over the remainder of your treatment and afterwards.

akaza-kabi
Posts: 6
Joined: Mar 2021

Thank you。Good advice

Rocquie's picture
Rocquie
Posts: 856
Joined: Mar 2013

Evarista, I always enjoy reading your very intelligent posts. In this case I would like to say that the word, "numb" is specific, meaning "lack of feeling".  It is certainly as descriptive as "burn" or "tingling". You use the word numb yourself, several times in your post above. 

Cheers,

Rocquie

ShadyGuy
Posts: 685
Joined: Jan 2017

A Merriam Webster


 Numb : unable to feel anything in a particular part of your body especially as a result of cold or anesthesia It was so cold that my fingers went numb.

 

In my case it means unable to feel normal things. I do feel pins pricking me and tingling and the occasional electric shock - none of which are real.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3662
Joined: May 2012

Pink Floyd's megahit Comfortably Numb (qv) explains the word perfectly.   Plus, it has what is consistently rated as one of the top two or three guitar solos in rock history.   Written as an anthem against the drug Prozac, and the mental and emotional numbness it (supposidly) induces.

PBL
Posts: 315
Joined: Jul 2016

My experience with Vincristine was severe enough that it was banned from my treatment after my first dose. Like Evarista and Max, I had severe numbness in my fingers, which persists to this day. I have learned to get by, essentially compensating by increased attention and visual control.

What made my hematologist say that there would be no more Vincristine for me was that, along with the numbness, I also had pretty severe ileus (my gut was pretty much paralyzed for five awful days following my first infusion) as well as weakness in my legs (suddenly I became unable to crouch and stand back up without hoisting myself up with my hands) and severe pain in my facial nerve, which made it difficult to chew for a while. Interestingly, when my hair started growing back in post-chemotherapy, I found it painful - apparently, another manifestation of Vincristine-induced neuropathy.

Ah well, as some on the forum will say, it's the cost of living! Still, you should not be shy about letting your medical team know of any symptoms you experience, as they may be able to offer some adjustments or treatments to help alleviate those.

PBL

ShadyGuy
Posts: 685
Joined: Jan 2017

My chemo was not Epoch. I had other drug(chemical) called fludarabine along with cytoxin and another drug whose name I cannot recall. Also rituxan. This is generally considered less harsh than EPOCH. However after 6 cycles I was bald and had fairly severe neuropathy but only in my toes. Almost 3 years later it is milder but still present. I am happy to say it is not constant now and bothers me most at night. I get numbness, tingling and sensations like needles sticking me. I just try to ignore it. I am so glad I did not have it in my fingers. My point being it will likely get better with time even if it does not completely go away. Good luck!

akaza-kabi
Posts: 6
Joined: Mar 2021

I'm starting my 3rd cycle now. Doctor said unless I have Trouble grasping things ,they are not going to adjust dosage. Beside, the treatment works based on CT scan ,the tumor in my chest shrunk form 10cm before treatment to 3cm. They think it's best to stay this course.

They do gave me multivitamin as comfort. Don't know if that helps.

Scot Larsen
Posts: 1
Joined: May 2021

I am in the middle of 6 rounds of DA-R-EPOCH (just finished round 4). I started experiencing numbness in my legs and feet right from the beginning. Actually round 1 was the worst, but I think it was complicated by the fact they over-hydrated me and my legs and feet got really swollen.

All the other posters are right, Vincristine is probably the culprit, but some of the other drugs also list neuropathy as a side effect (e.g. etoposide). So the R-EPOCH regime is probably more likely to cause neuropathy than say something like R-CHOP.

So I have been working hard to manage the neuropathy. I am a runner; a have completed a couple ultra-marathons and batch of trail marathons. So naturally I don't want to lose my legs! There is not much out there (that I have found) on how to *prevent* neuropathy during chemo. So I am going off of my physiology education over years of training. I believe the key is movement; do at least some sort of walk everyday... even on the bad days. Do some body-weight only strength exercises. Very simple exercises like air-squats or chair squats (youtube these terms if you don't know what they are). Simple lunges are great, too. And some basic stretching helps.

If you can, double-up on the walks. Do a short walk in the afternoon. Make sure stretch your legs throughout the day, as well. There is nothing like chemo to make you want to not move. But you have to fight this!

Since you mention neuropathy in your fingers, add some upper body exercises and hand exercises to help.

All this will also have the added benefit of helping you survive the rest of the treatment as well as fight fatigue.

Hope this helps in some way. May God be with you through this awful experience.

Lym999
Posts: 41
Joined: Feb 2020

My fingers would go numb to the point where it was hard to turn a page of my newspaper. It mainly happened when they were cold in particular.

 

Akaza, What kind of Lymphoma do you have? Was it in your lung or chest?

greentea55
Posts: 11
Joined: Feb 2021

I did see some wearing these gloves for neuropathy, guess keeping hands cold may prevent some of the effects, so my last two treatments I take 2 frozen 16 oz water bottles and place  hands during Vincristine treatment. Amazon>

 

Hot and Cold Hand Therapy Gloves, Hand Ice Pack, Ice and Heat Therapy Pain Relieving Mittens | Microwavable and Freezable, Arthritis, Finger and Hand Injuries, and Carpal Tunnel (Glove Ice Pack)

 

 

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