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Topic: Questions re:pain & neuropathy with an unsupportive medical team

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Feb 6, 2020 10:52PM

Chumbawamba wrote:

I read everywhere about the pain and other side effects of TCHP, surgery and radiation and how providers are prescribing meds to help ease symptoms. Well, I'm the opposite. During TCHP I suffered debilitating and diffuse swelling in my limbs and trunk, horrible folliculitis and mucositis and muscle cramps that were as much as 10/10 at times. Tomorrow is my last of 25 radiation treatments and I'm considering skipping it because I can't imagine how much more these "zingers" will be after I'm burnt even more than I'm feeling tonight. I'm supposed to continue the Herceptin/Perjeta thru May, however, the cramps get worse and worse with each cycle and I began to experience progressive numbness and severe weakness in my fingers and hands over the past 4 months. I read about how docs are making adjustments or prescribing all sorts of meds for patients in these forums to help relieve or control the side effects. I had no other choice but to lie around in agony during the TCHP portion of treatment last summer since my doctor didn't offer any medical relief whatsoever (I didn't think to ask for anything because I assumed I had to just suffer through like everyone else). But, I thought the worst was over once the chemo portion was finished only to continue with my present symptoms that my doc says I shouldn't have (from Herceptin/Perjeta). So, since my muscles shouldn't be tight and cramping and I shouldn't have numbness and weakness to the point that I cannot tie my shoes or turn the key in my ignition with one hand, tear open packages or close a ziploc bag he refuses to offer ANY relief. I got so frustrated in December that I finally point blank asked for prescription for pain or at the very least a muscle relaxer or a consult to a pain specialist just to see what he would do. No meds ordered but I will finally see a pain specialist next week (yes, over 2 months for it to be scheduled). I'm not holding my breath, though. I'm stuck with my oncologist since I'm in a smallish town with one oncology practice and his partners won't take on a patient who is already established in the practice. I will be seeing another oncologist out of town next Friday and will seek any recommendations he can offer. I would greatly appreciate any and all recommendations that have helped others regarding the muscle cramps and pin-prick sensations and numbness and weakness. The PT's keep telling me that my symptoms sound and appear to be the neuropathy their other cancer patients have suffered but my oncologist says it can't be that. Sorry this is so long. I do hope some of you can offer helpful advice regarding symptom relief/management and share how you were diagnosed with neuropathy. I'm really nervous about how much more nerve damage I will suffer if I continue treatment thru May and whether it will be permanent. All I got today was, "you can always stop treatment at any time."...yeah, and I can always roll over, give up and DIE...NOT!

Dx 9/5/2018, IDC, Right, <1cm, Stage IB, Grade 3, 0/5 nodes, ER-/PR-, HER2- (FISH) Dx 9/5/2018, DCIS, Right, 3cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 5/2/2019, IDC, Right, 1cm, Grade 3, 0/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 6/10/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/10/2019 Herceptin (trastuzumab) Targeted Therapy 6/10/2019 Perjeta (pertuzumab) Surgery 10/24/2019 Lumpectomy: Right
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Feb 6, 2020 11:46PM - edited Feb 6, 2020 11:47PM by HeartShapedBox

I'm not surprised they don't want to give you narcotics; with the current opioid crisis, DR's are more wary than they used to be about the dangers of accidental addiction with long term use during medical treatment.

If you're doing so poorly on this current regimine, you might ask your MO about dropping the Perjeta and just staying on the Herceptin (perjeta only adds a little benefit for the cost of it's side effects, anyway) Most people seem to find Herceptin alone very tolerable (I do).

There are some things you could try to reduce the actual symptoms. Many clinical studies show the efficacy of glutamine supplements (it's an amino acid) in preventing chemo-induced peripheral neuropathy. B-vitamins can also help. Sometimes hyaluronic acid supplements are prescribed as a remedy when neuropathy has already set in. And muscle cramps are often caused by low levels of magnesium and potassium. I personally tried all of these supplements (besides hyaluronic acid) and was able to prevent neuropathy and get rid of my leg cramps during chemo, but I also stopped perjeta after 4 cycles because the side effects were too much to tolerate.

Diagnosed at age 43. Triple + luminal B regional spread to lymph nodes, pathological TNM stage llB after 6 sessions neoadjuvant TCHP (dropped perjeta after 4 doses), initial clinical stage lllA Dx 5/24/2019, IDC, Left, 5cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Targeted Therapy 8/1/2019 Herceptin (trastuzumab) Dx 12/27/2019, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2+ (IHC) Surgery 12/27/2019 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 3/4/2020 Whole-breast: Lymph nodes, Chest wall
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Feb 7, 2020 12:16AM Chumbawamba wrote:

Duh?!? I didn't even think of just stopping the Perjeta for the remaining months. I may do that if I can't get them to make any other adjustments (I'm trying to find out more about slowing the infusion rate or adding steroid, if that is possible). I used to take a lot of nutritional supplements but I was told to go off of them because so many can interfere with the effectiveness of the treatments. So, I've been trying to eat more sensibly and wait it out. I've been taking magnesium supplements but was scolded about my potassium supplements so I started drinking a lot of coconut water instead. Recently, I added a natural watermelon based electrolyte drink and trace minerals. I've resumed taking some of my B supplements but was nervous about taking too much since some of my supplements have mega vitamin C and I was advised against that while in chemo and radiation. I did read something recently on glutamine but forgot about that. I'll look into that more. I figured doc would not offer the narcotic but I was just so frustrated with his lack of support that I wanted to see if he'd offer ANYTHING. I've seen and heard so much about neurontin and some of the anti-depressants that have helped some people and I had hoped he'd offer some non-narcotic options if I could make him understand how horrible my symptoms were. My recurrence was such a surprise (as, I'm sure, everyone's is). I'm just so nervous about making sure I do everything that I can to kill every last cancer cell that I don't want to stop early. Your suggestions are really helpful. Thanks!

Dx 9/5/2018, IDC, Right, <1cm, Stage IB, Grade 3, 0/5 nodes, ER-/PR-, HER2- (FISH) Dx 9/5/2018, DCIS, Right, 3cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 5/2/2019, IDC, Right, 1cm, Grade 3, 0/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 6/10/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/10/2019 Herceptin (trastuzumab) Targeted Therapy 6/10/2019 Perjeta (pertuzumab) Surgery 10/24/2019 Lumpectomy: Right
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Feb 11, 2020 01:27PM Selkie36 wrote:

Are you taking steroids? Dexamethasone? That can also cause nerve pain and tingling.

DCIS fall 2014, holistic tx, 2017:mets to skin; hyster/ooph, herceptin, taxotere and perjeta; BMX June 2018. Lung & lymph mets 10/2018. HER2-. Ibrance/Faslodex. Xeloda. Gemzar. WBR jan 2020
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Feb 11, 2020 04:39PM MinusTwo wrote:

I had TCHP and the taxotere & the carboplatin are the things that caused the neuropathy. Sounds like you are through with those. However, I agree with the idea of Herceptin only for the rest of the year. I dropped the Perjeta after radiation due to diarrhea. I lost 60+ lbs with chemo that I didn't really need to lose and decided Herceptin would have to do it alone. I found that comparatively easy. I was tired & had a drippy nose, but I think a lot of weakness was residual from 2 sets of chemo & rads.

My neurologist pinpointed the neuropathy. It can "get better" over a couple of years but she cautioned that doesn't mean back to where you started. And the only treatment is for pain - not just numb, dead feet or fingers. There are several drugs that people have found effective for the pain. I've found only continued, ongoing exercise helps with my balance since the feet are numb.

I took & still take magnesium 5 years our for leg cramps. When I stop that one little supplement, the leg cramps come back.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 11, 2020 04:53PM 2002chickadee wrote:

Chumbawumba, I do not have neuropathy, but radiation caused severe and very painful muscle spasming all across my chest and into my arm. I could hardly lift it and felt like I constantly needed to stretch. It has been helped substantially by physical therapy and muscle relaxers. My primary care doc prescribed something called Baclofen, that knocked me out so hard I really couldn't take it. Then I saw a physiatrist (rehab med doctor) who prescribed PT and put me on something called tizanadine. I take one every night at bedtime, it made me sleepy at first but not really anymore. I notice increased tightness if I skip a day. I also have to stretch every single day or it can progress and get worse.

Hope you find some relief soon. It's so hard to advocate for yourself sometimes ...

DX'ed at age 41 on my first mammogram Dx 1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap Chemotherapy 3/23/2018 CMF Dx 9/2018, IDC, Right, <1cm, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy: Right Hormonal Therapy Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Feb 11, 2020 06:49PM JRNJ wrote:

chumba. I can’t help with your treatment but I can sympathize with poor medical care. These ladies have lots of good advice. My advice is do your own research, follow your gut, and push for what you want and get a second and third opinion. I’m being over medicated. Been complaining for weeks and getting bullshits answers I know are not true. I found mistakes in my scans, dr told me I was wrong. Radiologist told me I was right and amended report. I had two top docs with total opposite strong opinions on chemo.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal
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Feb 12, 2020 09:29AM dtad wrote:

Chumpawamba...so sorry you are going through this. What makes it worse is no one is listening to you. My first recommendation is to get to a major university based teaching hospital no matter how far away it is. I would start with a new oncologist but you should also see a neurologist. There are neurologists there who specialize in neuropathy. You have all the symptoms of neuropathy. The fact that your current oncologist did not diagnose it properly is malpractice. There are drugs for neuropathy that are not narcotics. I have an autoimmune neuropathy. The symptoms are the same no matter the cause. The cause of yours is obviously the chemo. I can say first hand that neuropathy pain and weakness is horrible. Neuropathic pain is probably the worst pain you can have. I understand that you do not live close to a university hospital. However, just get a second opinion at one and then go from there. Please feel free to ask me any questions. Hopefully you can get on track and begin to feel better. Good luck and keep us posted

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 12, 2020 12:18PM marijen wrote:

It’s good you are doing your own research when a doctor won’t help. There are all kinds of OTC supplements for neuropathy. Turmeric/ curcumin and B12 are helpful. Also Ashrawanda and alpha lipoic acid. Go to Amazon and search pain relief supplements. Low dose naltrexone is great but you will need a prescription, most likely from a naturopath. Look it up at self- hacked.com. It’s also anti-cancer. Vitamin D, Magnesium and Calcium will help too.


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Feb 12, 2020 02:15PM Chumbawamba wrote:

I’m new to this website and still learning how to use the posting section. This was my first discussion in which I posted. Sorry I’m so late to reply. I’ve been obsessed with nonstop research and reading as I’ve become more debilitated with each treatment. I REALLY appreciate the time each of you has taken to share your helpful information. I’ve been wondering about autoimmune/immunotherapy induced neuropathy since I already have Hashimoto’s thyroiditis. Patients with autoimmune disease have been excluded from the most immunotherapy studies. I finally got in with a local endocrine NP who really listened and she ordered some bloodwork that came back normal for free T3 and Free T4 and low/normal for thyroid antibodies but a more elevated TSH than I’m used to having (2.1). TSH above 1 usually leads to fibromyalgia flares for me. I’ll be flying to see my former gyn/endocrinologist in 2 weeks and see what changes she may recommend to ensure we are doing due diligence to minimize/avoid thyroid related myalgia.

I only iced my feet and hands during the chemo June-September and don’t recall symptoms of constant and worsening numbness back then. The muscle pain in the summer was different (can’t recall, exactly). But as my immune system slowly recovered from the suppressive effects of the chemo, that was when these new cyclical cramps, followed by the progressive numbness and weakness appeared. Since my MO kept telling me HP shouldn’t be causing my symptoms and I haven’t gotten any answers from the local docs yet, I finally called Genentech to inquire about my symptoms and any adjustments they could recommend. Oddly enough, I am reading various studies in which up to 32% of patients on Perjeta can experience peripheral neuropathy. Can’t recall off hand what the stats were for myalgia. Genentech wasn’t helpful and the people to whom I spoke said they weren’t away of my symptoms being associated with HP so they couldn’t make any recommendations. They did take down my symptoms but since I’m not an oncologist reporting them on behalf of a patient, I doubt they will consider them. So, as long as the doctors are told the side effects are minimal and unlikely to occur, I presume they will continue to be dismissive of patients like me, resulting in an under-reporting of these side effects in patients with autoimmune disease.

I requested additional bloodwork from the NP last week and, although it was day 10 of my HP cycle (and the spasms weren’t as severe by then), creatine kinase was mildly elevated (188). The MO orders standard blood work immediately BEFORE infusion but I’m wondering if additional blood work for creatine kinase, ESR and CRP sometime post infusion between days 1-5 would provide some insight since the spasms start during or shortly after receiving the infusions. Interesting to read that radiation caused similar problems with arms and chest for 2002Chick and I have a friend who takes tizanadine. Haven’t tried it but will ask about it since Robaxin and flexeril from past injuries haven’t been much help. I only did steroids day before during and after TCHP. I’m not on steroids presently. I do take Zizol at bedtime and that helps with the runny nose through out and somewhat with the flue like symptoms that get the first week of the cycle.

I’m going to a major Univ cancer center this Friday. The MO I’ll see was my 2nd opinion last year when I was diagnosed with the recurrence. I plan to discuss everything with him including any and all insight from this discussion. I received a voicemail last night that the local MO is at least receptive to slowing the infusion rate to see if that will minimize the spasms during treatment next week. If the Univ MO wants me to transfer all care to him for closer observation so that he can make other changes to my treatment plan, I’m willing to do so. I’ll likely have more questions when I return from the appointment, especially pertaining to testing for diagnosis of neruropathy. I, too, have had my doubts about the quality of the local imaging interpretations since I’m not seeing any reports that indicate any correlation and review between all studies. So, I’ve pretty much decided to return to the Uni for future imaging and also plan to inquire about a second radiology opinion for ONE radiologist to review all studies performed thus far. I realize my concerns may seem to be extreme based upon my diagnoses listed. But, an outside laboratory lost my tumor block mid testing in 2018 which resulted in a 7 month delay in treatment, until a new and larger tumor recurrence was found next to the implant (hence, my anxiety about discontinuation of any available treatment). So, while the local docs are treating me like a stage 1 recurrence, the UNIV Docs appear to be more sympathetic about the uniqueness of my situation and more thorough in aproach

Dx 9/5/2018, IDC, Right, <1cm, Stage IB, Grade 3, 0/5 nodes, ER-/PR-, HER2- (FISH) Dx 9/5/2018, DCIS, Right, 3cm, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2018 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 5/2/2019, IDC, Right, 1cm, Grade 3, 0/5 nodes, ER-/PR-, HER2+ (IHC) Chemotherapy 6/10/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/10/2019 Herceptin (trastuzumab) Targeted Therapy 6/10/2019 Perjeta (pertuzumab) Surgery 10/24/2019 Lumpectomy: Right
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Feb 12, 2020 02:46PM marijen wrote:

I love to see it when ladies here take matters into their own hands! Good luck and keep us posted!

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Feb 15, 2020 11:59AM CBK wrote:

chumbawumba

I was diagnosed with neuropathy on my 7th infusion of taxol. I took B vitamins and eventually went for acupuncture to help alleviate pain and numbness. No idea why my MO didn’t have meicing during chemo; still makes me nuts

I took one dose of gabapentin and it zonked me terribly so that was not an option for pain relief.

I’m a little over 2 years out from my last chemo and it’s dramatically improved although I still experience discomfort in my heels when it’s very cold and I don’t take enough CBD oil. If you want to go for natural pain relief, you may want to inquire if CBD could work for you.

I hope you find some relief and get the attention you deserve!! Best of luck to you !!

Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant

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