Response to chemo

blue22

I finished all the planned rounds of chemo, and have another MRI and skin biopsies scheduled prior to surgery. My breast is still red in some areas, and the skin still feels abnormal.

For those of you who have completed chemo - how good was the response? Did all the redness go away or did you need additional treatment prior to surgery?

LoriCA

I didn't have surgery so my answer won't be meaningful as far as how it will affect your ability to have surgery. Hopefully the others will chime in.

Even though I only had a partial response my redness did disappear near the end of chemo, but it returned shortly after and unfortunately was because as soon as we stopped chemo the IBC started spreading again. My skin texture was permanently changed. It may depend on the extent of skin involvement you had but I was told it was scarring from the damage the cancer did to my skin.

If your skin is still red and swollen and they don't think they should do the surgery, they will either try another chemo, or sometimes do radiation next (before surgery, instead of after). It's going to be a judgement call. Good luck with everything blue22, let us know how it goes.

Newfromny

After 6 rounds of chemo , TCHP, the swelling in my left breast had gone down but was still somewhat pink. I was diagnosed clinically with IBC.The MRI no longer showed the tumor but still some skin thickness. They decided to do a mastectomy and I had complete response including lymph nodes. I did radiation and I'm having herceptin/perjeta through October. Let me know if you have any other questions. Judi

Leslie2010

Hi blue22, response to chemo is different for each person. The MRI and skin biopsy will provide you that answer. An IBC specialist told me not to have surgery until a near complete response was achieved. At the end of my planned 6 months chemo, the MRI result was inconclusive, the big lump was still very hard. So, I followed the IBC specialist’s recommendation, had radiation/chemo concurrent treatment prior to surgery. I have been NED for 8 years, very glad that I followed the specialist’s plan not the local tumor board’s recommendation to have surgery after the planned chemo. Hang in there...

blue22

Leslie2010 how long did you have radiation/chemo treatment before surgery? Were you seeing a specialist outside of your local Drs? This is something that I have been wondering if I should do, although my cancer center is pretty large and they see a decent number of IBC cases, so they should know what they are doing.

I definitely still have a hard lump in addition to the red/thick skin.

Congrats on being NED for 8 years!

Leslie2010

Hi blue22, thank you! It was the standard radiation treatment with boules for IBC, then 6 weeks rest waiting for the skin to heal, then surgery. Mine was TN, so that was part of the reasons. Yes, I did go to outside IBC specialist since the local oncologist office only have seen one case of IBC before. And, my insurance was pretty good. My local drs were very open and cooperative towards the IBC specialist. Though I had to sign a waiver with the radiation oncologist since it was against the tumor board’s recommendation. But, he was the first one to called me with the biopsy results after I got home from the surgery and told me he learned something new;-).
Have you gotten the MRI and biopsy results back? You are being treated in a large hospital with good numbers of successful IBC cases, then you should not worry.

blue22

My MRI is this week, so right now just waiting. I think the periods in between scheduled treatments are probably the toughest, not knowing what is next. I feel like once I started chemo, I just followed through, it almost became routine.

Leslie2010

Hi blue22, yes, the in between period is the toughest. It took me a long while to learn to balance between being vigilant (worrying) and just enjoying the good days.
BTW, what is your tumor type? Mine was TNs, treatment options are way more limited, it made more sense to me to try to have a near complete response before surgery. Thank God, the chemo/radiation concurrent treatment worked. But, after the surgery, though my local team declared only 1mm atypical cells left, the IBC specialist office found cancer cells peppered around skin margins, so I had 5 more months of chemo after surgery.

blue22

My tumor is ER+PR+ HER2- What was the chemo you had with the radiation?

I have my MRI today, and am supposed to have the punch biopsies tomorrow. I hope I won't have to wait long to find out what is next.

Leslie2010

It was Xeloda. As yours is ER+PR+, based on my understanding, hormone therapy usually is part of the treatment plan. I am guessing your dr. is waiting for the results, present them to the tumor board and provide you the next step. Not long now, hang in there. Don’t know whether you got your taste back, eat some good food regardless. Oh, if you have weak digestive system like me, don’t eat salad or any raw food even if your doc said it was OK.

blue22

None of my Drs. have said anything about what to eat, but we have lots of flyers, pamphlets, and free nutritional counseling that I ended up cancelling due to schedule conflict.

I somewhat have my taste back, but not much of an appetite. Although I love salad, it sounds just plain gross. Same thing with a lot of raw veggies and even most cooked veggies. I had a weak digestive system long before BC, but never had an issue with salad or raw veggies before.

Flo80

Thank you so much . I am having pain like every where in my body where I can press. I just got claritan so might help.

Leslie2010

blue22: understand about the appetite issue. A friend of mine that is stage 4 long term cancer survivor advised me since day 1 to eat like it is part of the treatment, get Ensure or any form of nutritional drinks that I could stand, to keep my energy up. My doc told me not to eat any raw food, citrus juice, and so on during chemo. As soon as I was done with the 6 months chemo, it was summer, I asked if I could eat salad, she told me go ahead eat anything, get the body ready for the surgery. Well, I had a salad and suffered for 2 weeks... What I am trying to say is eating right is part of the fight. Get a walk or two in might help your appetite. When is your appointment for the results?

Flo80: AC was really rough on my joints and bones also. The chemo is raging war on the cancer cells plus! My doc told me to take Tylenol, drink a lot a lot of water, exercise every day.

Flo80

Thank you so much. I am trying to go to work every day to keep my mind off this and get the daily bit of exercise

sbelizabeth

At the end of my TAC chemo the redness had faded a lot, but it was still a faded red-brown color. It wasn't completely gone. But I'm ER positive and we rarely get complete pathological response to chemo.

The chemo, rads, mastectomy, and letrozole must be working though. It'll be eight years this October.

Leslie2010

sbelizabeth: almost 8 years, that’s awesome!

sbelizabeth

Leslie, my sister was diagnosed with IBC 9 months after me. She's doing great as well. From your signature line it looks like you are too!

Flo80

I wish you all a very happy and healthy life. I just started with Adriamycin and was wondering how the response to Chemo is as I am er and or positive and for hert I was equivocal and they are waiting for the results. I did not have much redness before chemotherapy as I had a lump that was 5.2cm. But after chemo my breast has become swollen and red. Wondering when they come to know how the tumour is responding to chemo

blue22

My punch biopsy came back benign, so surgery is next. I am a bit nervous, especially since it is only one biopsy and my breast is pretty ugly. MRI still showed skin thickening.

Leslie2010

sbelizabeth: that’s incredible, 2 in one family! Yes, 8 years NED;-).

Flo80: thank you! I have been checking off my bucket list one by one, adding more on the list in the last 2 years. As you are ER+, sbelizabeth will know better than me. I had a strange case, my affected breast didn’t change in color/look nor feel(hard rock) all thru first 6 months of chemo, so my oncologist had to do both pet/ct scan and MRI to see the response. They did one in my 3rd month, didn’t think AC was doing much, so they immediately switched to different combo. You just had your first dose, so it’s a bit early to tell I think. I will suggest that you ask your oncologist how they are planning to monitor your progress.

blue22: understand the nervousness... As yours is ER+, there are way more options to treat after surgery and subsequent radiation. Other than the skin thickening, did the tumor shrink in size?

blue22

Leslie2010 Both the tumor and the lymph nodes shrank in size - so that was really good news. Everyone has commented that they think the tumor is not so hard.

sbelizabeth that is awesome to hear both you and your sister are doing well! The first thing I did when I found out I had BC was contact my sisters. I have a cousin who also had IBC several years ago and is doing well. We have both had genetic testing but did not find anything conclusive.

blue22

Judi reading your post is comforting. That is awesome that you had a complete response!

Flo80

Thank you so much Leslie.

sbelizabeth how was your response to first few rounds of AC chemo

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blue22

Flo80 I had Taxol first then AC. My MO was concerned about the response to Taxol and ordered an extra MRI (I had 6 total over the course of treatment because I am in a study). The response to Taxol was very slow. My response to AC (tumor size) was much better.

I initially had just a lump, and pain - including pain under my arm. The redness wasn't prominent until later.

blue22

For everyone who had surgery, how long did you wait in between chemo and surgery?

Flo80

Thank you so much. I am sure everything will go well for you. I also did not have much redness and peel de orange before. After the first treatment my redness increased but looks like very less now. I feel my peel de orange has increased not sure though. I also have a lump and my skin punch biopsy was negative. I have been diagnosed with the Mri showing skin thickness

Flo80

Thank you so much. I am sure everything will go well for you. I also did not have much redness and peel de orange before. After the first treatment my redness increased but looks like very less now. I feel my peel de orange has increased not sure though. I also have a lump and my skin punch biopsy was negative. I have been diagnosed with the Mri showing skin thickness

michelemk

I had surgery 8 weeks after my last chemo treatment. Then another 8 weeks until rad started. Then, like Leslie2010 I am TN so did 6 months of Xeloda after rad. It's a tough road. I am sending beautiful, healing thoughts to all of you. Understand the nervousness, I still am even though I am NED for only 2 years though. This is such a stubborn disease. But then I hear Leslie is 8 years NED and makes me smile. I wish this for all of you.

Leslie2010

Blue22: congrats on the tumor and lymph nodes got smaller! If you are in a study, I guess they will do surgery after standard 6-8 weeks wait for the body to heal.

michelemk: yay to 2 years NED!! I understand the nervousness, IBC does make us a bit more jumpier especially for TNs. Best wishes to many more! Both the IBC specialist and my local oncologist told me, for TNs 80% of recurrence happened in the first 2 years. So, 2 years NED is a great milestone!

blue22

Getting surgery next week. Nervous, but just want to keep plugging away at this. It will be ~ 5 weeks after the last AC.

Flo80

Good luck with the surgery Blue22.

Leslie this always ponders me that for IBC how much percent chance is for a reoccurrence