Vent about Permanent Neuropathy

I had my 1st BC in 1989 at 43. I had chemo and radiation and surgery. I had an axellary dissection and a segmental mastectomy. Never any problem with lymphodema. Then in 2001 started having problems with my shoulder and some swelling in my upper arm. Went to a shoulder specialist who said I had an impingement in my shoulder. Had physical therapy for 2 months, 3 times a week. When I was not getting any relief and the shoulder doctor wanted to inject me with a steroid I asked my PCP for help. She sent me for an EMG which told them I had a tumor in my Brachael Plexis. When I finally returned to my oncologist I had a lump in my neck also. They were able to biopsy that and it was the BC again. The one in my shoulder was 4 centimeters.! I had chemo and another 36 radiation treatments and also cyber knife for the shoulder.(this is radiation also, not surgery) All went well, my shoulder never really recovered but certainly I was able to use it. Now 16 years later my arm is swollen and I have no feeling in my hand and my wrist just hangs. And the nerve pain is unreal. I take 1600 mgs of Neurontin. I am seeing anoncology neurologist for the past 6 months and he is telling me I have scar tissue from radiation. He has never once mentioned RIBP. I am so happy to find out that I am not the only one with this and there is a name for it. I can no longer write let alone sign my name. Can't shake hands, open jars etc... I type with my left hand. I am trying very hard not to be depressed, I have a very supportive husband and two great daughters and six wonderful grandkids. But this is a real challenge.

Hi, all

When I am home in the summer I have 3 pair of shoes I interchange over the day, 2 are Merrell sandals and 1 is SAS. All have arch support, but I find in this very hot weather we are having that all of them will irritate the top of my feet, like a heat rash. When it happens I switch to one of the other pair, when I go out I take along an extra pair of shoes.

This morning in bed my legs cramped so bad I jumped out of bed, got one leg straightened, couldn't straighten the other one and fell on my butt! No harm done, but not a good way to start the day.

GirlPowerDebbie, I used to be a good cook. Now that I live alone I eat very plain food, and now that it's high summer it often feels too hot to eat.

Ozoner, is the constipation and the urinary urgency blamed on CIPN too?

Keep trying to get a post on here and am determined to finish this one! I would like to vent on my neuropathy! I saw at the beginning of this thread that many were complaining or arm and hand issues but more recently it seems to be legs and feet.

For me it is tingling/burning and pain in my hands along with pain either radiating to or from my scapula. I got Lymphedema for the first time in late April while flying. I had my compression sleeve on and was even on a lie flat bed in business class a (a big treat as I was using all my points. I had flown longer flights in January and March for NZ so was really surprised to see my hand like a balloon. Anyway, long story short I was on my way to Nepal to lead my swan song trek which I did do~~Mustang which is a high altitude trek. The lymphedema was there but did not bother me.

On my return to Vancouver I already had 6 monthly appts. made and by that time I did have the tingling in my hands and the pain from my scapula but still not bad. However my implant redone only less than 6 months prior, was already contracting and cording starting, the reasons for the redo in December. My PS decided to remove all ASAP and scheduled that for June 26 whereas it took me well over a year to wait for the previous surgery. We were moving also in June and there was a fair bit of stress~~duh! But all the problems were getting worse and by the morning of surgery, I could hardly wait for anesthesia everything hurt so much. I had hoped that would resolve the issues but no and the past weeks have intensified the pain and my fingers and hand have tingling/burning and intense pain at times along with the pain from scapula and through my arm. I now have numbness in my under forearm where there is mild edema. The strength in my hand has decreased remarkably in the past 10 days.

I had an ultrasound of axilla and supraclavicular area July 11 and unremarkable. I already had an MRI booked for same and since then my cancer agency has worked hard to decide what to do and luckily head of radiation was in on a weekend a couple of weeks ago when the MRI dept. was trying to decide on two MRI's. After lots of consolation the MRI July 31 is to be C-Spine and brachial plexus in hopes of finding out where the nerve damage is coming from. I also started Lyrica last Sat. 75 mg twice a day. I think it may be helping but am not jumping up and down about adding another drug.

I have not been able to lie on my right side for a month as immediately the pins and needles start and arm to hand goes numb. Wish I was left handed too! Possibly the Lyrica, but I am sleeping better and not taking any Zolpadem which was I was taking most nights though a small amount~~2.5 mg.

So that is my went for the day and am hoping one of you has similar circumstances. We are off to a folk festival today for the weekend so it should be fun and take my mind off this. Certainly it is a mystery.

Hi, Marianelizabeth

I agree with Elinor, not sure if what you have is CIPN. It can be confusing when we have so much going on. My story briefly: I have a partially torn rotator cuff in shoulder and torn bicep, on right side, which is also the side where my breast was removed. I have rt. hand carpal tunnel also. So my entire right arm and upper body has nerve damage, but not necessarily chemo-induced. BUT, I also have symptoms in both feet and both legs that started with my first chemo treatment, and that neuropathy has intensified the nerve damage in my other areas, and joined in the party. Right after chemo ended I had horrible, flaring pain that slowly died down over the next 6 months or so, but I am left with a numb, nervy mastectomy site; pain through the underarm area sometimes, a painful shoulder, CIPN in all limbs that affects in various ways, and still the carpal tunnel. Sorry you developed the lymphedema, I hope that does not bother you too much. I hope your tests will give you some answers, and I'm glad the drugs you tried have given you some relief. I am interested to know what your tests will say!

Hey maryna8,

Yes, the long nerves in the body can be affected by chemo. It took me a long time to put 2 and 2 together, especially with strange SEs like stumbling, constipation, and urinary problems. I was a Stage I patient chosen for a drug trial (ATEMPT) with Kadcyla, a drug commonly used for Stage IV cancer--and known to cause neuropathy. After four months my MO was concerned that I was developing neuropathy, so with his blessings I asked to switch to the targeted drug Herceptin. I was on that for eight months.

For me, staying busy helps me to deal. I take Cymbalta for anxiety (took Zoloft for several years) and it also helps with neuropathy pain. I am lucky to have had Stage I cancer, but I just didn't know the realities I would face after Kadcyla, rads, AIs, and now Tamoxifen. As a trial drop-out, I will be followed for at least five years, and hopefully my stats will help others being treated with this strong and effective drug.

Has anybody try neuroquell for their neuropathy?

On amazon there is what looks to be a knock off neuropaquell as well.

neuroquell is a vitamin herb combination with a lot of B vitamins in it. Website is healthassure123.com. The naturopath recommended it. Not sure if I want to spring for the cost, but if it might help...

Hi MexicoHeather,

I have CIPN which includes constipation and incontinence. It seems that when I am able to defeat the constipation that the urinary urgency gets better too. No one mentioned these SEs, and it took me a while to figure it out, but I'm positive now the chemo is the cause (Kadcyla for me).

I'm on a trip now which will include walking, but I hired a wheelchair at the airport because my legs were weak. I take dance lessons, take short walks, Zumba Gold, and low-key birdwatching in my kayak. No where near as vigorous as before, but I'm thankful I can have fun.

I also have moments of instability, with a stagger sometimes. So weird all of this seemed to come out of the blue. I take Senna S for constipation and am armed with Poise pads when I am out. Weak legs, burning feet. But two years have passed since chemo, and I'm ever hopeful that I'll be able to keep up with my friends and not talk about my problems.

Please let us know what your new doctor says. I have had some improvement with kegel exercises.

Hi, Lita19901

I will be 65 in September, right there with you. I am having some mental issues about being Medicare age! Apparently you survived all that, it gives me hope!

That is a tough situation you are in. I have wondered what I would do if I had to face another cancer and have more neuropathy-causing drugs. I don't know, because I don't think I would know until I'm there in that situation. I do know that if you are E+P+H+, there are drugs that target all of that. I am Triple Negative, so I had Adriamycin, Cytoxan, and Taxotere in chemo infusions. There is no targeting pill to follow up with for my type. You, however, do have drugs available that can target the tumor-receptors that you have. And yes, if you get Taxol, it may cause more neuropathy. I am sorry you find yourself here in this predicament, but we are here for you. Please keep in touch and let us know what is happening with you.

And your doll-making is a wonderful talent, don't discount it! I'm sure it makes you happy. You should post a pic of one of your dolls. It's easy, click the little landscape pic thingy at the top of your post.

Mayry

Mary,Thanks so much for responding to my post - I really appreciate it!

The problem with being triple positive with existing neuropathy is that all the medications cause neuropathy. I was holding onto the hope that I could at least get chemo but now that door is closing.

I did attach a picture of one of my dolls - she's about 10 inches tall and this outfit is a work in progress. I think the length of the top need to be longer and the also the ruffle. Sorry the picture is so big but I wasn't able to resize it - enjoy

lita, your doll is charming

I have had nueropathy for long time, way before my diagnosis in 08

Now that, i have reoccured, trying to deal with taxol but my onc is helpful and my hospital also works with patients

I also ran into an old pal who recently got his phd in physical therapy with a specialty in cancer survivors and he has offered to work with me regarding excercises, his thesis included nueropathy

Hi, Proud to Spin,

Sorry about your neuropathy and your BC recurrence, if I read your post right.

You mentioned your pal, a PHD, who wants to work with you on exercises, he did a thesis on neuropathy. It would be great if you could share some of what you learn, I am always looking for things I can do to up my strength and endurance, I lost so much of that during treatment and side effects. Do you have the leg weakness caused by CIPN as many of us do?

.

What a tough decision, Lita. I don't have all your details, but this site might be helpful in reaching your decision:

http://www.predict.nhs.uk

Statistics are just that and someone has been to be the "rare exception," but I would also ask my oncologist for some very specific information on the risks and potential rewards of the proposed treatment options.

I began having neuropathy in my dominant / right hand during my 2nd Taxol treatment and it ultimately affected that hand, my toes, the soles of my feet and my shins. I had no history of neuropathy, but some hand coordination issues related to severe Fibromyalgia. As I dropped my K-cup for the third time just trying to make a blasted cup of coffee yesterday morning, I was deeply regretting the Taxol, BUT many women want to feel confident they've done everything possible to avoid a recurrence / metastasis. There is no right answer, but I hope you reach a decision that brings you peace.

Lyn

Hi, MexicoHeather,

I liked your rundown of things you have tried for CIPN treatment too, can't say we don't try! I have looked at the rebounders, haven't got one yet, I have tried a lot of things too that didn't work out. All I accomplished doing most of them was to hurt myself a little more!

I also tried several different drugs, the worst I tried was Amitriptyline, no offense to anyone taking it who finds it helpful. It did block pain, but I felt like I was wrapped in cotton balls, fuzzy-brained and nauseous at the same time. I am not taking any of them right now.

I hear you about your oncologist. My doc is not interested in anything except cancer, tumors etc. As far as she is concerned, the effects of chemo are gone after 6 months. She is a good doc, but I think the very large percentage of MOs are not schooled on long-term neuropathy. I do think more attention is being given to it in research labs and so forth. Right now we just all seem to have similar experiences with individual twists, but I am proud of all of us here, we keep trying!

hello I went thru neuropathy also lots of side effects have Fibromyalgia n other side effects But gladly take them to still be here 23yrs Later Praise God to be a Survivor. msphil idc stage2 0\3nodes Lmast reconstruction didn't work body rejected it 3Mon chemo before n after surgery was planning our 2nd wedding at diagnosis got married after chemo before radiation. God Bless Us All.