IBC lounge: roll call, support and just a good place to hang out
Comments
-
You gals are all so brave. I'm feeling suffocated by the cording; the Gezmar is quite tolerable, I just don't have much proof it is working. I so much would like a get-out-of-jail-free card.
0 -
Amarantha I am so happy to hear that you are tolerating Gemzar well, that's a very big thing in itself. Hopefully it is quietly working and you'll see results soon. When is your next scan?
0 -
Lori, Yours is a most complicated treatment and I think of you when your ubiquitous Twitter posts appear. I've also read many of your travel articles which I did enjoy. It's always worth remembering that we all here had other lives pre cancer and we are not solely defined by our disease.
Which meds are to be increased? Hoping you won't be off to the races anytime soon, and trusting the echocardiogram shows you a way forward!
amarantha, Hoping Gemzar gets you a get-out-of-jail-free card. When is your next scan? Best wishes.
0 -
TT he's most concerned about the numbness/pins and needles in my right hand. You may remember that I lost all use of that arm once before because of a tumor tangled in that brachial nerve bundle, but he said it could also be the lymph nodes affecting it even though I don't have any swelling that would typically accompany it. It's a mystery symptom right now because we're not sure exactly what it causing it. He's concerned because the double-dose of B complex, on top of the gabapentin, has done nothing. The B complex is supposed to help regenerate nerves and repair damage, the gabapentin should relieve nerve pain (I originally started the gabapentin for Grierson-Gopalan syndrome in my feet that was preventing me from getting any sleep, and it does provide some measure of relief for that). So we increased my gabapentin dosage again to see if it helps.
The other big one that started a year ago and has gotten progressively worse is the severe cramping and spasms throughout my body - feet, legs, hands, arms, and both sides of ribs front and back. They aren't typical muscle cramps, it seems to actually be the tendon spasming. For example the tendon along the outside of my shin contracts, causing my foot to cramp; the tendon along my forearm contracts, causing my hand to cramp. Usually for a foot cramp you'd put your weight on the ball of your foot to get it to release, I have to put pressure all along that leg tendon to get the foot cramp to release. Anyway, the pain is so bad that it takes my breath away (especially in my ribs), sometimes multiple places cramp at the same time (one time it was both legs/feet, my hand, and one side of my ribs, all at the same time), and now it often happens upwards of 100 time per day. Typically once they start they will continue every few minutes for hours. It's not from dehydration, it's not an electrolyte imbalance, no typical "muscle cramp" remedy has worked and it just keeps getting worse and worse. He said when it happens this often, the muscles can get "twitchy" and the slightest little thing (like breathing) can set them off. I told him it's wearing me out and I just can't deal with it anymore. I can't exercise, I couldn't swim this summer because my ribs would cramp as soon as I started the first stroke, it happens when I'm just lying on the sofa watching TV or lying in bed. It's been non-stop and on top of everything else it has been making me completely miserable. He also thinks it might be what's causing my constant headaches, my body is in a constant state of stress. So now we're trying a muscle relaxer.
Downside of both of those meds is that drowsiness can be a side effect. I take all of the gabapentin at bed time so I can sleep (900mg now), but I need to take the muscle relaxer in the morning and I don't want to drive while taking it until I see how it affects my reaction time, so yesterday I skipped it because I had to go out, and today I'm trying a half dose to see if it's enough to help.
It's kind of funny the way that he brings up increasing or adding meds because he knows I hate to take meds unless it is absolutely necessary, but he also has realized that I don't complain about a symptom until I reach the point that I can't deal with it anymore.The prescription for the muscle relaxer calls for taking it 3x daily, but he said up front that he has no problem if I want to start with half a tablet per day and see if it's enough to relief symptoms, which gives me plenty of room to increase and fine tune the dose on my own if I need to.
If I can get the non-stop cramps and spasms to at least slow down, and hopefully relieve my daily headaches too, I might finally stop being so miserable and cranky all of the time.
It's hard to remember my pre-cancer life, managing this disease has become a full-time job for me.
0 -
LoriCA: I CANNOT imagine having so many cramps all over your body, no wonder you are feeling so miserable:-( I wish they find the cause and cure for it! I developed the tendon cramps during and after treatments just in my legs and hands, I still suffer from it from time to time. When it starts to happen more than once a day, I would force feed myself banana, potassium and magnesium supplements for a few days, usually it will quiet down a little. During treatments, I had acupuncture once a week to minimize neuropathy, I noticed it would stop the cramps for a few days. I got very worried about driving, didn’t know when the foot cramps would happen, my ankle would suddenly twist sideway, the searing pain making me losing control over that leg, thank god, it only happens one foot at a time, had many close calls in Silicon Valley stop and go traffic. Compare to the frequency and magnitude your cramps are..., I pray that you find a way to minimize it.
Amaranth: I am glad you found Gemzar is tolerable and do hope it is chipping away the bad cancer cells. You are brave, too! I pray a get-out-jail-free card is dealt to you soon.0 -
Thanks Leslie. Mine aren't from an electrolyte imbalance so bananas, magnesium, potassium didn't do a thing to slow them down. I've tried everything, including tonic water with quinine at my nurse's suggestion because quinine is a little known remedy for cramps. And it's not because I'm dehydrated, if anything I'm over-hydrated. They aren't that type of cramp. I think it's actually a form of neuropathy, which is really just nerve damage, probably from Perjeta. It started a few months after I went on H&P and just got worse every month.
A few people have suggested I try acupuncture, but to be honest with all of the emotional trauma I've been going through this past year every time someone needs to access a vein, the last thing I'm in the mood for is to have someone sticking me with needles.
0 -
I am so sorry Lori that you have to go through this. I pray that you start feeling better soon. I just wish there is a cure for all this and no one goes through this
0 -
Thanks Flo, but I'm doing okay. In the overall scheme of things, to me it's just lots of little issues that take a toll when all added together but it's nothing that is immediately life-threatening, I'm not going through anything like what Amarantha is going through right now. And since I have been that bad in the past, as long as I don't currently feel that bad "right now" I know I'll get through it, although my MO told me that I need to stop trying to minimize it because they have serious implications. The toughest part is trying to come to terms with the fact that this is likely the best I am ever going to feel again. I was hoping that after rads I would maybe feel as good as I did last summer and it was a big disappointment that instead I continued to feel worse every month.
0 -
Lori I wish you a speedy recovery and I am sure you will be better soon.
0 -
LoriCA: I agree with you, I think it might be caused by neuropathy. I was an avid ping pong player and hiker, experienced muscle cramps pretty often. Totally agree what you described as tendon cramps are very different. Before chemo, I have never experienced ankle twisted sideway kind of cramps.
Regarding acupuncture, the needles( I know the last thing you want to hear is more needles) do not go into your veins, so no ‘pricked by pricks’ instance, though a good acupuncturist is hard to find, I went thru 4 of them, finally found one that could subside the pin-and-needle feelings in my hands and feet, and the tendon cramps. When the thin needle goes into pressure point, you will feel sore, but are very tolerable. I was a bit disappointed the acupuncturist wouldn’t treat me after surgery for fear of causing lymphedema. I don’t know whether it was the cumulative effect of all the chemo, for me the neuropathy got bad without acupuncture, even my oncologist commented on it.
I do not like extra pills also, that’s why I suggest other things that worked for me. I sincerely hope you find something that will help you. Please keep the sodium electrolytes level in check when you over hydrate. (((hugs)))0 -
I have a full metabolic panel (CMP) done every 3 weeks. My labs have always been perfect, nothing has ever been out of line, even through multiple rounds of chemo. It amazes my oncologists because they've never seen anyone who doesn't show even the least little effect from chemo, radiation, etc.
0 -
LoriCA: that is absolutely amazing!! Hope you feel better!0
-
hello warriors I have a new problem. My breast non cancer on sometimes has itching in the nipple area not much but at times. Should I get worried. Is it possible to get cancer in other breast while on chemotherapy. Also a mosquito bite like rash very tiny
0 -
i got my full report. Is there a way you. Can help interpret it?
0 -
Provided clinical information: 39-year-old female with 3 weeks of
right breast redness and thickening pain treated for mastitis with 2
rounds of antibiotics. Not improved. Positive family history in her
grandmother with a history of inflammatory breast cancer.
Procedure and materials: 2-D digital mammography in the CC and MLO
projection and 3-D digital breast tomosynthesis in the CC and MLO
projection were obtained of the breasts. Additional true lateral and
spot magnification views of the right breast were obtained. 2-D images
were analyzed by a CAD system.
Comparison studies: None.
Reason for examination: Right breast redness and thickening
Observations:
Breast composition: b. There are scattered areas of fibroglandular
density.
There are extensive coarse heterogeneous calcifications in a segmental
distribution somewhat in a linear configuration in the 2-4 o'clock
inner right breast with associated asymmetries over an area of 10 x 8
cm. Diffuse skin thickening is noted on the right. Targeted ultrasound
was performed. No suspicious mass, distortion, calcifications, or
other findings identified on the left.
ULTRASOUND:
Multiple real-time 2-D grayscale images of the 2-4 o'clock right
breast and right axilla were obtained. Color Doppler imaging was used
to evaluate vascularity. I personally rescanned the patient. Area of
concern is thickened and erythematous.
Scattered heterogeneous hypoechoic shadowing areas are noted
throughout the 2 to the 4:00 right breast, mid to posterior depth,
likely corresponding to the asymmetry/calcifications seen on
mammogram. Surrounding vascularity is noted. There is borderline right
axillary lymph node with cortex measuring approximately 3 to 4 mm.
Preserved fatty hilum. No other suspicious adenopathy.
IMPRESSION
Extensive suspicious coarse heterogeneous calcifications over 10 cm in
the 2-4 o'clock in her right breast with associated asymmetries and
skin thickening concerning for inflammatory breast cancer. Area of
concern corresponds with heterogeneous hypoechoic shadowing lesions
under ultrasound and tissue diagnosis with ultrasound-guided biopsy is
recommended for further evaluation. Borderline thickened right
axillary lymph node.
Findings were discussed with the patient and her mother. She will be
scheduled to return for her biopsy.
Recommendation: Ultrasound-guided biopsy right breast
BI-RADS Assessment: Category 5: Highly suggestive of malignancy -
Appropriate action should be taken.
Signed by Elizabeth Werner, MD on 8/12/2019 5:01 PM
0 -
Missmom79: Regarding the report, in short, the radiologist found areas of concerns for IBC. So, she is sending you to a surgeon to do the biopsy, it can be punch or incisional (my surgeon doesn’t do punch biopsy). I know you want to know what you got badly, but again, only after the surgeon gets the path report and MRI report back, can properly tell you what it is and staging of your BC. I know how scary it is, for yourself and your kids, you have to muster all your strengths to fight whatever it is.0
-
Flo80: I asked the same question like you did to my oncologist and specialist before, they told me the likelihood is very small to ‘spread’ to the other breast. Did your oncologist tell you how he or she plans to monitor your progress, response to chemo?0
-
oh so the surgeon will do another biopsy? That should have been her job as a radiologist to do the punch biopsy. You don’t do a core biopsy when you have concern for IBC. Even I know this. I am trying to muster all my strength but this is killing me. All I can do is cry. I have been scared of cancer my whole life and ended up with it. I won’t be the first and def won’t be the last one. I am just so scared of the IBC and the survival rates. That what scares e the most.
0 -
Leslie thank you. My oncologist says they will do MRI after all the chemo is over before surgery. They use a tape to measure my mass. My mass has shrunk in three cycles also in the affected breast no more redness and it’s soft. Only this itching a little and mosquito size rash is bothering me
0 -
Flo I'm sorry your post got lost and no one responded to you. It would be unusual but it certainly is possible, especially if you have a very high Ki67 like I do. Two times so far IBC has spread has spread from my right breast into my left, the first was before I started chemo and we were doing the staging scans, but the second time was last year when I was back on chemo but had gone chemo resistant. Both times we could see the vascular redness spread out from where it started, it grew across my sternum and onto the opposite breast, around to my back, and down onto my abdomen as the cancer spread through my skin. In other words, it didn't jump from one breast to the other, and it didn't clear up in one breast and show up in the other, it spread outward. If your skin is clearing up in the breast originally diagnosed, it's a strong sign that you are responding to the chemo.
When I was first diagnosed I used to get a lot of weird symptoms in the opposite breast, pain, itching, and at one point I even felt large lumps but it wasn't cancer (only my skin on that breast was affected, and it immediately responded to the first round of chemo). I don't know if it was some kind of a reaction to chemo or just because I was so obsessed about it spreading so fast that I was overreacting to every little thing. To this day I still get the occasional weird pain and itchiness in my opposite breast, but Stage IV gets regular scans to monitor for progression and my PET and MRI scans always show that there is nothing to be concerned about. Hopefully yours is nothing to worry about too.
ETA: just noticed that Leslie responded but I missed it!
0 -
Thank you so much Lori . I am just watching that area and looks like it has reduced a bit. Now I feel itching in the whole body at times. This whole process makes us all scared. I have an appointment with my oncologist day after tomorrow and will mention this. I also heard that it’s very unlikely for the breast cancer to spread to another breast. I hope you are feeling better and I always think about you. Thank you so much for taking time to answer me. Thanks to Leslie too
0 -
What chemo are you doing? Your profile doesn't show your hormonal status and treatment. Chemo might be causing the itching, and if you are HER2+ and on Herceptin, Herceptin most definitely can cause severe itching and a rash, from mild to severe.
It is very scary in the beginning, and I know it's hard to believe but you really will settle in to everything. I can't say any of it becomes easier, but your mind will settle down. We have a saying around here that always pops into my head when I get scared - you don't have to be brave, you just have to show up. Sounds like you are having a good initial response to chemo, I hope it does a good job of shrinking everything and clearing up your skin for surgery.
Thanks for your good thoughts! The muscle relaxers seem to be really helping with the cramps and spasms, I only get an occasional twinge instead of 70-100 intense spasms per day, so I'm very happy about that. Makes me feel a bit more normal.
0 -
Hi Lori I am so happy that you are feeling better. My Harmon’s status is er/Pr + and hert-. I am doing Ac 4 dose dense and then Taxol 4 dose dense and this Friday is my last AC. My oncologist is using a tape to measure my mass and it has shrunk and the redness is gone and peu de orange has also reduced. My diagnosis is confusing as the surgeon and radiologist has suggested IBC but my oncologist says it’s not. They only did one punch biopsy that came negative but they are following the same protocol as IBC. My MRI had showed a mass of 5.2 and ultrasound 2.8. There was skin thickening detected byMRi and chest Ct. Oncologist says that skin thickness can be caused by lymphatic blockage without Tehran cancer in the skin. But with all these I man stage 3B and there’s were prominent lymph nodes in Amrita which they say they cannot he sure until surgery. They could feel one in my underarm and now after chemo they cannot feel i
0 -
I haven't done AC so not familiar with the side effects of it. I have done Taxol twice and had a lot of itching and pain. I told myself it was the chemo attacking the cancer cells and pictured this big battle taking place in my body with the chemo emerging victorious haha.
It is true that a non-IBC cancer can cause symptoms similar to IBC. IBC can be so hard to diagnose properly unless punch biopsy shows cancer cells that are characteristic of IBC (mine clearly showed that it was in lymphatic system and growing in sheet-like layers characteristic of IBC, but I had every textbook symptom in the extreme so it was just confirmation of what we already suspected). Good that they are playing it safe and treating as IBC, nobody wants to cut into skin that might be infiltrated with cancer.
I hope you continue to have good results with chemo!
0 -
Thank you so much Lori. Only I wish they had taken more samples for punch biopsy. Will ask them if they can do a mri after I finis the AC chemo
0 -
Missmom I don't understand why they don't do a punch biopsy. It is pretty easy to do, and the only way to see if the cancer has spread to the dermal lymphatics.
0 -
After my lumpectomy, when they unknowingly cut through skin that had a boatload of cancer in it, my breast turned flaming red. I thought it was a post-op infection but the redness subsided. I was puzzled but chalked it up to post-op weirdness. I've heard other reports where cutting into skin with dermal lymphatic invasion makes the cancer go gangbusters.
Flo, I did TAC chemo, which is the same cocktail as AC+T, only all three given each chemo round. I had clear margins when chemo was finished and the mastectomy was done, although there were still a lot of cancer cells in that area of the skin. ER+ cancers tend to respond slowly to chemo, and we don't frequently get PCR (complete pathological response) to chemo, but that's OK. The aromatase inhibitors (letrozole, aromasin) are our big guns to prevent recurrence.
I'm so glad they're treating you with the "kitchen sink" approach and not just relying on that one negative skin punch biopsy.
0 -
Flo80 I get your worry about only one punch biopsy. I was worried that they only did one after chemo when they were deciding if it was okay to go ahead with surgery. I still had redness after 12 rounds of Taxol followed by 4 rounds of AC.
I also had prominent lymph nodes. They did an FNA biopsy on one before treatment and confirmed it had cancer.
0 -
I'm also confused why they haven't done a punch biopsy for missmom, that should be the first thing they do when IBC is suspected. The only way to definitely confirm cancer cells in the skin is to biopsy the skin. When I had mine done they did three to make sure they got a good sample of the (suspected) cancer cells.
0 -
Thank you Sheiz and Blue22. I just hope they do a scan to see the response to chemo.At the moment they just use a tape to measure.Just anxious and worried .Thank you so much everyone
0
