Pain in IBC breast during chemo?

HerSister

Hoping someone can help with question... Has anyone experienced pain in their IBC breast, prior to treatment, that worsened during treatment (chemo, not RAD treatment)?

My sister is the patient & started chemo (Taxotere/Carboplatin) on Fri. (4/22), Leukine 4/25 & 4/26 + Herceptin 4/26 (this is the very 1st round).  She is experiencing pain in her cancerous breast, worse than prior to beginning treatment.  She has only been able to speak w/ the on-call Onc. doc. (not her own) who doesn't seem to think it's related or important/worrisome).  One nurse she spoke w/ about it said "maybe it's the chemo going to work".  She asked me to google info on the pain & of course I can't find anything about it.  She's just wondering if it's normal or not.  I think she's worried things are worse in her breast as she's of the mindset that chemo will do more harm than good.  I had told her the other day that the cancer can't advance any further while on chemo, but after doing more research, I found that's not necessarily true & feel bad I've unintentially lied to her.  Then, I intentially lied to her tonight when she was trying to rationalize why she's got this pain in her breast by saying "well, things can't be getting worse in there, right?"  Being on the spot & worried she'll quit the chemo, I said "right".  Ugh!

anonymice

Yes, I'd say I had pain in my cancerous breast that was worse than pre-chemo for a bit, absolutely, because I also remember wondering if I was just getting worse.  I'd say that went away in the second month sometime.

ibcmets

They monitor ibc very well.  I believe she will have a pet scan every 3 months for the first year.  This will tell her and her doctor what is working or not working.

Terri

MNSuzi

I did not have pain in my breast prior to dx or chemo, but I have had intermittent pain throughout chemo. I had 4 AC, I just had dose 11 of 12 taxols, and I take on 800mg of pazopanib (clinical trial). Despite the pains, my breast now appears normal and I had a clean PET CT in January.



I choose to believe it's the chemo working!

HerSister

I cannot thank you all enough for replying to my post!!  When I spoke w/ my sister tonight, she started crying because she was worried about the pains she is getting.  BUT, I was able to reassure her because of all of your responses!!  THANK  YOU SO MUCH!!  I wish she could get on here too, but she cannot afford an internet connection right now.  So I am her online presence.

Also, apparently she is also getting pains in her shoulder area, so I guess I should revise my question to include did you get pains in other areas (not just breast) during chemo that were worse (or as in MNSuzi's case, not present) than prior to chemo?

anonymice

I did have shoulder pain, absolutely - I don't know if it was directly related to IBC, but it was definitely at least indirectly related.  I wouldn't worry about any shoulder pain, back pain, neck pain, headaches, or stomach problems that didn't last very long or weren't severe - basically, any sort of common stress pain (such as tight shoulders and neck!).  Your sister is under an immense amount of stress!  

You're a wonderful sister.  Feel free to PM me with any other questions!

SpecialK

I am currently on tx#4 of 6, TCH.  My cancer is IDC but I answered this post because I am on this cocktail.  I had BMX and complete node dissection (1 month later) prior to starting chemo.  I definitely get pain all around my chest, arm, etc.  Some of it is due to edema directly related to the chemo, and also irritation and inflammation that are side effects particularly of Taxotere.  I experience body aches and random pain pretty much everywhere but have noticed that I had less of it on this last tx because I am now taking steroids for a longer period due to a rash after tx#3.  This might be something your sister may want to address with her onc if she is not already doing this.  Good luck!

deborrob

I am currently doing weekly Taxol for IBC.  I am having a lot of pain in my breast right now.  Not sure why, but it's definitely worse than prior to chemo.

HerSister

Hi Pam, SpecialK & Deborro,

Thank you all so much for your replies.  I am very sorry to know that all of you (and Suzi & Terri) had extra pains (on top of all the stuff that comes w/ this diagnosis) but, I am relieved to know that it is not out of the ordinary.  I always update my sister when someone posts a response to my questions & you all have reassured her tremendously!  I cannot thank you enough!

Pam - I think you are right about stress pains in her case!  She's just so afraid of the chemo (it's been an almost daily fight to attempt to convince her to continue w/ her treatment!).  She is honestly more afraid of the chemo (& future surgery) than she is the IBC.  Plus, one of the onco's said that she shouldn't be having pains, so they were no help to her & made her worry more.  Thank you for saying so, but I'm not really a wonderful sister - my sister is and so are you and all the other ladies that are here!!  Especially those of you that have helped me w/ my questions!  It may sound silly, but I feel this connection w/ you all & so I pray for everyone here!

SpecialK - question about the edema you mentioned... is it just plain old due to the chemo or especially so because you've had BMX + node dissection?  I understand that w/ IBC, MX typically comes after chemo.

Thanks again to all my lovely sisters!!

Marianne

leisaparis

I'll throw my 2 cents in. I had very sharp pains in my breast & under arm while on chemo. It felt like someone was stabbing me with at knife and twisting it. Wouldn't be constant, but happened @ 3-4 times a day. I chalked it up to the chemo working. Hope this helps. Leisa

OtraVez

Me, too.  I realized later that I'd had similar pains when I was first diagnosed, before treatment started.   Since I figured it was just more of my body adjusting itself, I never thought about whether or not I should be concerned (maybe I should have been!)l.  I liked to think of it as the battle of the cells, wherin the cancer cells were shrieking as they fought for their lives again the chemo . . .

Tundra

Hi there HerSister,

 Very sorry to hear about your sister's IBC diagnosis and pains with the chemo.

 I've posted on here before when I was first diagnosed back in Dec 2010, but haven't been around in awhile. I actually found your post because I googled IBC and chemo and was trying to see if others has stories of strange things on chemo for IBC. 

Like other IBCers I'm getting the neo-adjuvant (pre-surgery) chemo. I've had 10 weekly Taxols, and 3 of my 4 cycles of AC. Things were moving along well for me when I was on Taxol -- the pain and redness went away -- but now I seem to be dealing with pain again.

It's interesting to me that you write about feeling like you lied to your sister about there being no chance of progression on chemo -- because I have worried about that and have had my medical onco and residents say that to me (!). Obviously you didn't "lie" to your sister -- you were trying your best with the knowledge you had at the time. :-) But it's strange to think that some of my doctors have tried to tell me that as if it's a fact -- they're doctors and should know better.

 Similarly, I had one of my main nurses tell me not to worry about the pain because pain is rarely associated with BC --- but I think IBC is different, because I definitely had pain leading up to my diagnosis and until I went on chemo.

Anyway -- I'm sorry not to give you a more cleat answer to your question. I am still in treatment and have not figured all this out yet. But I'm hoping to get some answers this week and will share anything relevant that I find out. 

I guess I'm just writing to say that from what I've experienced, all this stuff is not so clear-cut. It's important to not get too wrapped up in fear, but at the same time, I'm starting to believe that the person going through the treatment -- living with the cancer pre-surgery, is the best judge of what's going on in their own body. So if your sister is concerned she should feel free to talk to her team seriously about it.

All the best to both of you, and to all those who have posted above me in this thread. xoxo

ma111

I had the Taxotere Carboplatin and Herceptin mix in 2009 and I will never forget the pain. My doctor offered me pain pills befroe her started the chemo.

Also, carboplatin causes bone pain and Taxotere also causes muscle pain. Get her pain pills.

Herceptin causes tumor pain. Yes I had pain with that combo. Sorry your sister has to go through it and her doctors did not tell hre about the pain.

IBCpatientsdaughter

OH MY!!  I was just googling sharp pain with IBC and Chemo and found you.  It took me 20 minutes just to get signed up to this community!!  WHEW!  My mom has IBC.  She is undergoing INSULIN POTENTIATED THERAPY.  Which is a low dose chemo (10%).  They use insulin to lower the bloodsugar, which opens the cancer cells and makes them much more vulnerable to the chemo.  YOU MUST LOOK INTO THIS!!!!   She will NOT be doing the surgery OR radiation.  This link is where she is going.  Euro-Med in Phoenix AZ   602-404-0400.  Please look at their website!    My mom is responding very well. Her numbers went from 280's to 30's.    Ok, now about the pain.  Recently she is having sharp stabbing awful pains in the breast. I found a website (How to Relieve Inflammatory Breast Cancer Pain).  It says pain could be from damaged  nerves caused by the chemo.  Mom JUST NOW did what they suggested and feels better already.  Far infrared heating massager.  The sharp pains have subsided.  I couldn't put links in this post, sorry.   Please contact me anytime.  This is my first posting, so I am not quite sure how this works.   BUT LOOK INTO THE INSULIN POTENTIATED THERAPY!!!   Please, because it could save her life.  It is worth a phone call or at least look at the website.  I have to admit that the website is not all that exciting, but the results ARE!!!!  G O O D   L U C K~~~~

HerSister

IBCpatientsdaughter - how long has your mom been on this form of chemo (i.e.; when did she start, how often does she get treatments, how many does her course of treatment call for?)  Also, will she be having surgery & radiation?  What stage was she diagnosed?  What mets (metastases) does she have, if any?  What are the 'numbers' you are referring to (I'm not yet aware of numbers involved with IBC)?  And, lastly are they basing her "responding very well" on these 'numbers', or has she had follow-up scans?  Sorry for so many questions!  I am still learning - PLUS you've brought up something new to learn about (the chemo+insulin)!   

wifessupport

Friends,

Thanks for the response. After this post  got my wife checked by a psychiatric and he suggested Cymbalta 60mg and Ativan on a as needed basis.   Just wondering, does anyone know how long before she starts feeling significantly better.