redness progressing while on adriamycin

kathypot · January 2013

Hello all:

I was diagnosed with triple negative IBC in October and just finished my 4th round of adriamycin yesterday. For the last few weeks, the red areas to my breast have become larger. The oncologist did not think it was the cancer progressing, but thought it was cellulitis from the biopsy puncture site. I took erythromycin for a week with little change. I start Taxol in 2 weeks. Has this happened to anyone else?

Kathy

liv- · January 2013

hello sister, kathypot yes my ibc got very inflamed on first treatment then cleared up, then after 4th treatment i was sure that it was not responding to chemo and could feel the itch and redness were back.

i was right but no one would listen to me and by the time i had a mastectomy my tumor had grown to 10cm and it was clear by the path report that my tumor stopped responding when i said after the 4th treatment.

what stage are you, size etc.

all i can tell you is be right on the ball and any suspicions you may have, scream yell and keep doing so until you are completely satisfied that you are getting the correct treatment.

ibc is so aggressive so we have to be too, dont settle for anything that you arnt happy with, i changed my onc and so far im very happy with him and now feel a lot more confident in the path we are going.

still dont let my guard down and i question everything over and over.

and pls dont let them make you feel like they the professionals & know everything, they dont and im proof of that..i was told that mine wasnt growing and i listened and in that time my tumor grew & after mast path report it showed that it had grown and it also showed 17/24 nodes were infected. obviously the chemo stopped working.

best of luck

remember we are here with you.

xx

kathypot · January 2013

Liv

Thank you for your post. I am so sorry to hear of your struggle, but I am inspired by your strength and appreciate your willingness to share your story. I am stage IIIb, grade 3, triple negative. I plan to seek a second opinion at a facility that has a dedicated IBC program. I was sceptical about the antibiotic and believed the redness was progression rather than cellulitis. My oncologist admits he is unsure as well. Ultrasound showed approximately 2cm X 2cm mass. I did not have an MRI, but had CT scans and bone scans that were negative for metastisis. The mass felt more like over 5cm and is now decreased to the point that it is really not palpable and breast size has decreased considerably and is only slightly larger than the other breast. I am a lung cancer survivor and had a pneumenectomy in August 2011 after dealing with this cancer for 11 years. I was very lucky that my lung cancer responded to a targeted epidermal growth factor inhibitor, Iressa, which slowed growth. I also had chemotherapy, cetuximab and another epidermal growth factor for about 8 months for the lung cancer before asking for a pneuenectomy as the cancer had never moved to the left lung. All of these drugs caused skin toxicities, involving severe rashes. I get similar rashes with the Adriamycin on my arms, chest, shoulders, and back. The redness to my breast looks more like pictures of the IBC rash that I have seen and is accompanied by sharp stabbing pains.

liv- · January 2013

kathy so glad you are getting a 2nd opinion and with a dedicated ibc program, we do not have such a facility here in australia. sorry i just dont have much faith with ibc treatment as i too was put on antibiotics before diagnosis for 4 months in which the critter was growing like crazy.

its definitely a good sign if the mass felt like over 5cm and now decreased and is not palpable.

you have been through so much being a lung cancer survivor and thank gawd you responded to cetuximab.

at the beginning i got the sharp pains too, that was when the chemo was actually working, it felt like my nipple was being sucked out.

you know that if it appears to be growing again or you have a continual itch, dont hesitate one second.

xx

ibcmets · January 2013

Kathy,

I still had inflammation & redness from chemo with ibc. I had adriamyacin, taxotere & cytoxin at the same time, once every 3 weeks for 8 months. The breast tissue did become softer & I also had an idc tumor that chemo completely got rid of. I had PET scans done every 3 months so my onc could check status. It was not until after my mastectomy that my skin became normal in color again. I had a BMX a year after chemo.

Make sure you are tested every 3 months the first year for status.

Terri

kathypot · January 2013

Terri

Thank you for your post. It is reassuring to hear from someone who continued to have the inflammations, but clearly your chemo combination was effective. I hope you continue to do well. I did not have an MRI or PET scan of the breast prior to treatment. I had CT scans and bone scans to rule out metastasis, which was all negative. I had ultrasound and breast biopsies only for the breast. Where were you treated?

Kathy

ibcmets · January 2013

Kathy,

I go to Valley Oncology in Pleasanton, CA. I had my surgery done at San Ramon Medical in San Ramon CA. I had the dynamic duo-Dr. Wynn & Wotowic as my plastic surgeon.

They are very familiar with ibc here.

Best wishes on your treatment

Terri

liv- · January 2013

hello anyone that is still in lurking stage and a bit shy to join in, we were all there once, now we chat and support and pass on anything we think might help each other ...pls join in!

thx bon, you had it still there in the nodes that were removed and in all your skin? am i correct you didnt have radiation?

terry - why did you wait a year after chemo to have surgery?

xx

ibcmets · January 2013

Liv,

There are still quite a few doctors that will not do surgery on stage IV patients. Since it's metastacized, they think there is no need to to surgery and that it would not alter outcomes.

ibc is extremely aggressive and usually chemo, surgery & radiation are required. My onc was monitoring me closely and wanted me stable before doing the surgery. I'm glad I had it done.

Terri

kathypot · January 2013

Thank you, Bon. So great to hear you are 5 years out. I really appreciate the response.

Kathy

liv- · January 2013

terry thats a scary situation i know they mostly say once mets its not worth removing the breast is that right still today? i know i would still want it removed, its sorta in your face in the breast whereas i would assume that if it were mets to a distant organ you might not have the feeling that its right here?

glad you had someone that sounds to me was looking out for you. felt with mine as it was so big and kept growing through chemo i wanted them to try another chemo and shrink it first before mastectomy, could they have said no to me its too big for surgery, i often wonder that?

bon - wish you were my oncologist, you explain it so thorough but so clearly and make it so easy to understand. so its not defined on how many nodes are taken but as you say go for 16 its more important which one are bad. and with mine is this right under the arm they cut a wad of fat and inside that are the majority of where the nodes are located, so with me they found 24 nodes in there. how come we all have different amounts of nodes?

how are you kathy hope all is going well for you.

sometimes i forget apart from the zillion meds and vitamins and a no boob one side that i have cancer which is not really a good thing, must keep our guard up all the time.. dont trust the critter.

hugs to all.

xx

kathypot · January 2013

Liv

I am doing better since hearing from all of my new friends. I can't tell you how much I appreciate the response to my post.

Kathy

ibcmets · January 2013

Liv,

Some doctors do say there's no need for surgery with mets, but many are seeing the benefit of taking the tumor load away. I believe if you leave the cancer there, more chance for progression and for it to get worse. Stable is good for us.

Terri

liv- · January 2013

terri - i cant imagine leaving my cancerous breast there and cant believe that when i look at my flat chest im so happy considering that i only had breast implants in 4 months prior to diagnosis. not as vain as i thought i was.lol.

kathy- how are you my friend?

hows the rash any better?

((hugs))

kathypot · January 2013

I informed my oncologist this week that I was seeking an opinion from Dana Farber which has an IBC clinic. I am concerned about the breast redness progressing. My once had thought it was an infection or cellulitis and over the past 3 visits has said that I have had a good response to adriamycin, in spite of progressing redness. This conclusion is based upon examination only. I had expressed all along that I thought the redness was skin mets. I had my last adriamycin infusion 2 weeks ago and I am currently receiving my first taxol infusion.

A few days ago I emailed the NP who works with the oncologist requesting that I have weekly rather than biweekly infusions of the taxol due to some research that shows weekly infusions to have better outcomes particularly in advanced breast cancer and also less side effects. I also requested a an MRI to be compared with a research MRI which was done prior to chemo. I was told that they could not access the research MRI and MRIs were not standard treatment.

Today I met with the NP first and she stated that biweekly taxol is standard treatment and that all data is not in regarding the superiority of weekly taxol. She also told me that weekly taxol would be 12 weeks as opposed to 8 weeks for biweekly infusions. She stressed that they wanted to get me to surgery. I told her that my priority is the most effective drug given at the most effective dosing schedule prior to surgery. I wanted the best outcome prior to surgery as IBC and triple negative are not "standard" breast cancer.

The oncologist came in and now state that the redness is definitely progressing cancer and that it may mean AC was not effective. The redness has increased by a few centimeters, but basically appears the same as when he thought is was cellulitis or infection. He stated that if the taxol was not effective, surgery would be moved up.

I am very upset about (1) not having a baseline MRI (2) No comparison MRI to determine if AC was effective (3) Without data and only observation, going to surgery. Mostly, I am very confused. I do not want to be contentious or asking for unreasonable things. Please let me know if my issues regarding MRI are unfounded or the request for weekly taxol, and finally other's experience with redness during adriamycin.

I am going for opinion at Dana Farber in one week.

ibcmets · January 2013

Kathy,

I think a 2nd opinion will be good for you. I also had a lot of redness that did not go away with chemo and PET scans every 3 months to check on status. Surgery was recommended a year after chemo was completed.

Terri

mrsnjband · January 2013

Has the texture of your breast changed? I think the my area expanded but wasn't as red but then later got smaller. My breast specialist pointed out the fact that the texture was softer. I thought it was because I lost weight. She said it was because the AC was killing the cancer. If you are not happy with the opinion of your doctor then you have the right to get a second opinion. Sometimes I didn't like my chemo doctor but I fully trusted my breast specialist!!!! She saved my life!!!!!! NJ

ibcmets · January 2013

Bon,

Your information is so complete. Thank you. Question for you since I did not have rads? What side effects do you face today from radiation?

Terri

liv- · January 2013

((hugs)) Kathy - so sorry to hear your being put through this. imho what i know now i would not hesitate and get another opinion again.

in australia ibc is like a alien from another planet, no one has any idea about it and patients are suffering through lack of knowledge and depending on specialists that themselves have no idea.

when i started chemo my lump or mass was a large 6cm. responded well to chemo at first. nearly all the redness & itchiness had decreased & breast wasnt so inflamed & the mass felt smaller and the node above my collar bone had also shrunk.

after the 4th chemo my breast started to itch and was inflamed again. mentioned this to nitwit oncologist and she looks at me with "wtf" are you talking about. got to 5th treatment , still itchy and burning, had some nodules appear around the nipple, all classic symptoms of ibc. reaching the 6th treatment was lying on my side and the mass of cancer was so large it was hurting as it was stabbing/pressing into my other non cancerous breast.

wasnt at all happy with onc and was terrified as could feel it growing daily. got several opinions even from other states and got rid of onc and when the new oncologist looked at my scans from commencement and recent path from mastectomy, he stated

"yep it definitely stopped responding to chemo after the 4th dose".

it started at 2cm up to 6cm, shrunk a little, by the time i had my mastectomy it was 10cm.

Kathy dont let them fob you off, if your not satisfied and feel that you are being reasonable keep at it with your requests. you deserve to be satisfied and not have this added stress.

take care & try and keep strong and let us know.

xxx

liv- · January 2013

bonnie - as we are all aware, silence can be deadly with cancer and as ours is so rare & you dont hear much at all about it and like you say, its great to talk to others with the same.

my voice also became very hoarse during radiation also but has gone now. sounds like a fair trade off for you to have inhaler.

curvature in your spine looks so painful.. i see a lot of ladies with bc appear to have that side protected in their posture and ive always thought they are putting their whole body out and have wondered many times why we are not told, not to protect that side and try and build it up as soon as possible. thats why i always from the minute i had the mastectomy used heavier weights on that side, stretch that side much more and really put in a concentrated effort to always use that side more.
found that interesting that less than 3 lymph nodes, radiation is not needed and have noticed this even with 5+ cm cancers.
((HUGS)) bon you make sure you too get what you deserve and if in doubt, SHOUT!
hate hearing that you are having these worries

mrsnjband - great to hear that you trust and love your specialists and they saved your life -
for me it was the opposite. if i stayed with my original onc i would more than likely be in a lot worse state. as it was the new onc did more scans and luckily i had a blood clot where in between changing onc also showed that several nodes were back very enlarged on my chest and was put back on chemo.
sometimes we just have to go with gut instinct.

peace and love to you all.

xx

ibcmets · January 2013

Thank God he gave us women's intuition. Thanks Bon for the reply. Strange how one can actually metastacize with only 3 or less lymph nodes found with cancer.

Terri

kathypot · January 2013

Thanks for all of your replies and support. In answer to some of the questions, I only had a bit of redness at first including the spot where I had the biopsies. The redness progressed but a very large palpable mass and axillary lymph node disappeared. My initial skin biopsy was negative. I never had a PET or MRI. I really think this oncologist has not had any or very little experience with ibc. He insisted during 2 visits that the redness did not look like cancer and that I was having a good response to Adriamycin. Yesterday, I had progressing cancer and he questioned whether the adriamycin had been effective (not something you want to hear after suffering through that dreadful stuff). He said if the redness did not diminish with taxol that I would go to surgery earlier. I wrote to him later and told him that I did not think that a decision about surgery should be made strictly on what my skin looked like and that I wanted another skin biopsy and MRI (should have been PET!) Anyway, he never wrote me back. I am so relieved that I made plans for the 2nd opinion at Dana Farber before this appointment or I would have been completely devastated. When I returned home from my infusion yesterday I had a message from Dana Farber requesting me to sign a release of information for them to obtain pathology report and slides from my first lung surgery. OH MY GOD. They actually read the records I sent them and are perhaps looking at a connection between my lung and breast cancer. I have made a decision that I will not see my current oncologist again, whether I stay at the same health system or end up going somewhere else. If things do not go well for me, I at least need the peace of mind that I did what I could to get the best care by providers I had confidence in. Again, thanks for all the support!!

liv- · January 2013

kathy whoop whoop - fabulous - peace of mind.

sounds that you are getting things done and proud of you for trying to get what you deserve.

they better not mess with our kathy!!

well done.

liv- · January 2013

bon - hey shorty...joking!!

you never complain and nobody would care less if you did, we would just snuggle and cuddle you.

xx

redness progressing while on adriamycin

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