Inflammatory BC - Triple neg - chemo, rad then surgery
Breast minimal response to chemo 4 rounds AC then 4 rounds T.
I started radiation on 1/25/21 MO will add 1x wily chemo cisplatin on 2/8/21. I will have a total of 33 rad treatments 6,5 weeks. Just finished 2 weeks rads using miaderm 4x daily..
Breast size hasn't changed much - skin surface thick, red , swollen and I still have breast twinges - did anyone have a similar experience they can share thoughts or recommendation of what to expect with surgery being next... non skin sparing mastectomy, skin graft from thigh. How do you know your breast will be ready for surgery
EBBA
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Hello EBBA12. I'm just starting my chemo (Taxol) on Tuesday so I really don't have anything meaningful to contribute. I suppose I'd rely on my doctors to decide about my readiness for surgery. Have you discussed the surgery plan with your SO yet? I'm a bit puzzled that you are getting radiation ahead of surgery, but what I know about treatment options would fit into a thimble.
My best wishes to you for a successful treatment, and sorry I don't have anything of value to add... but maybe this will bump your thread and someone else will comment.
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thank you for posting.
My breast did not change much after chemo- the tumor board recommendation - cisplatin and radiation together before surgery to kill more cancer cells. , I am inflammatory triple negative.
Breast surgeon meeting after radiation on 3/15 to discuss. EBBA12
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Bless you, I hope the radiation will beat the cancer back and you have a successful surgery. I've just had one Taxol treatment and I've had some "twinges" in my cancerous breast today. I'm hoping that means the Taxol is attacking those nasty cancer cells in there.
Please post as things progress. I wish I had something of value to post, but I just want you to know that I "see" you and wish I could support you in some positive way. Cancer just sucks.
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Ok will do, you can always Private message me.
Yes I had twinges in my affected breast and armpit area while on taxol - I heard its the chemo fighting the cancer cells.
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EBBA--any updates? I'm wondering how your treatments are progressing. Check in when you can.
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I have had radiation treatment #23 so 10 more to go. I receive 50.4 gray as far as intensity. I have slight itching and more intense burn by my underarm where it started to peel after being fried. I apply MIADERM 6x a day instead of 4 and it helps some. Still have twinges in breast and underarm area.
RO took a CAT SCAN results on Tuesday to see if they will adjust treatment to target the tumor instead of the IBC hard outer shell.
I see the breast surgeon on 3/15.
EBBA
HOW IS YOUR TREATMENT GOING? Any issues
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Sounds like you're having a tough go of it, EBBA. Sorry to hear it and I hope they can make adjustments to your treatment. Keep me updated and I'm thinking of you.
So far, my chemo has gone well. I've only had 2 Taxol and my hair is falling out, but other than that it hasn't been too bad overall.
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By my third treatment of AC I asked by son to shave my head, I have a small head and bought two head coverings from Headcovers unlimited. With COVID I work from home so I did not feel the need by a wig.
Keep up your strength and eat and exercise. If needed you should ask your BS or MO for a nutritionist. They might help you with food s to eat to avoid constipation ( I take senokot 1x pm) or diarrhea.
OMG You are in Houston TX - How are you handling the H2O and winter weather crisis.
My prayers are with you.🙏 Are you having any problems getting to your treatments
EBBA
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Thanks; I'm doing pretty well so far... no diarrhea or constipation yet. I'm trying to eat more red meat and green veggies to keep my blood counts up.
We only had about a week of "winter storm" in Houston; it was 80 degrees today. I missed one chemo treatment last week when the city was shut down.
I appreciate the prayers and right back atcha, my friend.
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Where are you being treated, is it MD ANDERSON? Some centers offer hand-out and notes when you visit... mine did not.
Do you have a good support staff, ie family to help you? Are you close to your treatment facility?
watch the amount of red meat you consume. If you eat red meat, limit consumption to no more than about three portions per week. Three portions is equivalent to about 350–500g (about 12–18oz) cooked weight. You can eat chicken and pork chops too.
Consume very little, if any, processed meat. Processed meat is meat like bacon, ham, sausage and hot dogs.
Yes I did not have any issues until I had radiation and cisplatin....but It does not hurt to be prepared. Read below research foods to eat on reputable cancer site. I found the infusion nurses to be a great resource for foods eat and to avoid. DID YOU ADK ABOUT your MO about VITAMINS + SUPPLEMENTS - they said avoid multi vitamin with A C & E and mega red fish oil. I did not find this out until I was well into my treatment. Again I would run everything by your MO, bring in the vitamins in a plastic bag so he can view.
- For constipation, include a combination of soluble and insoluble fiber in your diet. Drink plenty of liquid to help move things through your digestive tract more quickly and easily. This can ease constipation. I used senokot.
- For diarrhea, you want to eat ONLY soluble fiber. Think of foods that absorb water and have a sticky quality after preparation or cooking. Examples include oats, barley, and white rice.
When people receive chemotherapy, their doctors monitor a type of white blood cell called a neutrophils. Neutrophils are part of the immune system. When neutrophil levels are abnormally low, it's called neutropenia. A normal neutrophil count is around 2,500-6,000. If yours is lower than that, and especially down to 1,000 or lower, your risk of infection is increased. If the count falls below 500, you have a condition called neutropenia, which greatly raises your risk of a serious infection...treatments could be delayed. I never had this happen.EBBA0 -
Yes, I'm a patient at MD Anderson. They do give printed handouts, and most of their information is also available online via MyChart.
Thanks for all the nutrition advice; I have a healthy diet so I feel OK with that. Plus my doctor told me to not lose any weight if I can help it, so if I can only eat ice cream to have the ice cream.
Hope you have a good week! Take care.
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Results of my Cat scan, tumor reduced 45% which is a nice reduction, silverdene bliss helped burned skin under my breast where it connects with my chest, the silverdene took off the dry burnt skin and now it is working on the redness. My AC + T did not yield a reduction, therefore rad 33x and weekly cisplatin were needed and it seems to be working prior to my surgery. I see the BS on 3/15.
tues- fri next week the last 4 treatments will be 60 gray, so I need to heal quickly. nurse told me 1 hour before to wipe it off excess under my breast before rad. Still applying both miradem and silverdene 4x daily.
Hopefully you are dealing with your third taxol infusion,, my 🙏 are with you.
Stay 💪 EBBA
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Hey EBBA! Great news on the tumor reduction. Hope your last treatments go well and you heal quickly.
Thanks for the good wishes. So far, Taxol hasn't been too bad at all and I'm hoping it will stay that way. My hair is thinning horribly, so I can get my "cancer patient look" goin' on.
Keep me updated on your progress, and take care.
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Hello, any updates from EBBA and LW422? I have IBC also. Third treatment of AC, one more and I'll see Breast Surgeon.
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HELLO, I see you are also TN. My prayers 🙏 are with you. I hope you have family helping you through this. Are you being treated at a cancer center?
Third treatment of AC,😷 remember reaction to chemo is culumative so make sure you rest. Being triple negative you can have soy milk which is high in protein, I also mixed in carnation instant breakfast. It is important to eat protein plus fruits + vegetables. Did you meet with a nutritionalist. Did anyone tell you to avoid taking multi vitamin containing A C + E as it can interfere with chemo...I found out on my own later so I thought it is worth paying it forward.
Has your breast changed since chemo. Is it the right or left and you have a medi-port for infusion right?yes you would need one for AC.
Mine breast did not change much after 4x AC then 4x Taxol...so before surgery - I had combo 1x weekly cisplatin with daily Radiation for 33x treatments. (My tumor reduced 45%). I never had Keytruda since it was not approved by my insurance company. I ended treatment - chemo on 3/8 + radiation 3/12. I am scheduled for surgery on 4/20. Needed appx 6wks to recover before surgery
Fingers crossed, pleas say a prayer. Let me know your treatment plan everyone plan could be different.
Any questions you can PM before 4/20 because I will probably not be able to respond directly after surgery since I am right handed. Lol.
GOOD LUCK with your care. Difficult having rare breast cancer but during COVID is no walk in the park. Stay well.
💪 EBBA
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Hello NatureYogi. Glad to meet you but I hate that we have to be here. My treatment is going OK; I've had 8 Taxol--so 4 more to go, then AC. I try not to think of the "IBC" thing or look at any statistics; I figure each of us is an individual and NOT a number. Honestly I don't feel sick at all so it's like I'm in a bad dream or something.
I see you're from beautiful Savannah. I'm originally from south GA, near Valdosta. All my family is scattered around the state so I get back there fairly often.
My best wishes for you to have an easy and successful treatment. Keep in touch so we can all support each other. We're going to beat this ugly thing.
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Hey EBBA. I was thinking of you recently and wondering how you're doing. I see your surgery is coming up soon so hang in there!
I can't tell much difference in my IBC breast since starting treatment. Seems like it gets a little redder and more "angry" looking for a couple of days after I have chemo, then it calms back down. The good news is that it doesn't look any worse!!
Take care and let us know how you're doing as it gets closer to your surgery.
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Hey LW422 good to hear from you. I remember my breast were redder while on Taxol, so yes angry and not getting worse is huge. Chemo is most active the first few days, but the treatments are cumulative.
My treatment plan - chemo AC or T did not improve shrinkage of tumor, so they opted for combo cisplatin and radiation, before surgery.
Yes I will hang in there, you too 😇 I am sending good vibes your way for complete healing. Please say a prayer 🙏 the day of my surgery. EBBA
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Thanks for the good vibes, EBBA! And you know I'll be praying for you now and on April 20!
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Good morning EBBA and LW422! I am so grateful I found you two, unfortunately under these circumstances. I am going to a cancer center about 20 minutes from my home, so I am glad I don't have to travel too far. Back in November, I noticed my right underarm lymph node enlarging, finally got into GYN after holidays and got set up for mammogram and ultrasound. Nothing showed up on mammogram, but nodes were enlarged. Had a biopsy, and got the news of TNBC. My right breast was starting to get a little bigger, but not red or sore. I went to see my breast surgeon I had 8 years ago for DCIS left side. Got a MRI and discovered where the original tumor/mass started, upper right. It has been a whirlwind that is for sure! I had a lot of swelling and pain on my right side, but went down after first treatment. I have stage 2 on my signature, but I think they moved me to Stage 3 after MRI, they said advanced locally. My WBC has gone down several times and I've had to take antibiotics, and my hemoglobin low, talking about blood transfusion. But good news is the lymph nodes have gone way down, breast still thick, but not hot to the touch.
EBBA-For your surgery, what will they be doing? Will they remove any nodes? I'll be thinking of you on the 20th and say prayers for a good recovery. Thank you for all the info!
LW422-very familiar with Valdosta! Yes this does seem like a bad dream, glad we have each other to support. I was shocked at how many people were at the treatment center.
Sending healing thoughts your way, hope you are both doing well and continue to heal from this awful disease.
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NatureYogi--I'm glad we all have each other, too. IBC can be so scary and it's nice to have others who understand. (Not that any breast cancer isn't terrifying!)
Yes, I'm afraid you are Stage 3; as I understand it IBC is never less than that. We just drew that lucky IBC card...ugh.
I was never able to find my IDC lump or feel the swollen node, so I don't know if those are better or not. I'll be having an ultrasound the first week of May, which gives me "scanxiety."
Hope everyone has a good week. Hang in there!!
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I will be having a modified radical mastectomy, possible removal portion pectorals major muscle. I had slight chest wall attachment. My initial tumors was 4.5cm but my breast shell became like a candy apple while on chemo so the skin involvement measured 13cm. They will be removing level 1 and 2 of lymph nodes, auxiliary procedure. I had radiation on level 3, my BS confirmed they no longer remove level 3. There is also 4 lymph-nodes on your beast which will be removed. Note you can not have reconstruction for 2 years. IBC for,s in layers
My right breast was somewhat pink and swollen, Primary thought it was a dog scratch infection. Received antibiotic amox-clavid. Regardless IBC is usually grade 3 they won’t know more until it is removed. It looks like they caught yours early if you are already responding to chemo which is huge. GREAT NEWS. I had swollen lymph node cluster involvement but thought it was from my arm rubbing against the huge side arm of my chair. I changed chairs and have been working from home since March 13, 2020. Lol. Who knew.
Let me know if you have any other questions.
EBB
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I know you will be relieved to have the surgery behind you, I'll be thinking of you.
Ladies have a good week and take care!
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Good luck with your surgery EBBA12, I'll be thinking of you and that you will get great clean margins. I am also afraid my positive skin involvement area will spread during chemo. I sure hope not. I hope to be able to have clean surgery too. Sorry to hear chemo did not help but hopefully it helped with preventing overall spread. My MO said if my insurance did not approve Kitruda, they could get it for free (just takes longer) so please ask your MO about that again. I'll be praying for you & speedy recovery from the surgery. You can do it!
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Everyone, mamacure - Nature Yogi - LW422 Thank youk for your well wishes for my upcoming surgery.
mamacure - 🙏 your chemo stay the course + beats down your cancer. What kind of skin involvement spreading are you referring too ? What chemo are you on? Why do you think it is spreading?
I could never tell what chemo did or did not do. Yes it did not spread. Since I did not have a good response to my initial chemo (AC + then T) is the reason cisplatin + radiation was introduced before surgery. Chemo + radiation reduced the tumor 45%. My breast shell skin involvement measured 13cm but now 7cm. I will need a thigh graft.
I 🙏 for 💪 and a positive 👍 healing experience for each of you.
Yes KEYTRUDA, my insurance company did not approve because they already approved cisplatin and radiation. I prayed if I did not need it, it would not be approved. Just to let you know in order to receive MERCK KEYTRUDA for free, there is paper work you both have to fill out. My problem is they never faxed my portion in. YES It could still be on the table. Another problem is I no longer have a medi-port. I had a skin problem after the infusion nurses never removed my steri strips after 10 days, mine never fell off in the shower so after 3.5 weeks so my skin got irritated thus the port had to be removed since 2 rounds of antibiotic did not clear up.
I 🙏 for a recovery without complications. Speedy would be nice too! 😇 EBBA
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EBBA12, praying your surgery goes well on the 20th.
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Hello all, I worry too about skin involvement, I know from MRI that it spread into some muscles. I had a pity party a couple days ago, cried about everything. Just trying to absorb all of this, seems like things happen so fast, first diagnosed as TN, and boom, IBC. But all I can do is take one hour at a time. My son in Colorado lifted me up, said I'll get past this and we would be back at hiking together again. Seems so far away though.
EBBA, you are my focus right now, I am sending positive energy your way, asking angels to watch over you. Archangel Rafael is the angel of healing/sickness/medical. May he surround you with light, feel peaceful over the next several days. I'll be praying for you and will continue to pray after surgery.
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NATURE YOGI, thanks my breast got angry and more red while on chemo, I would like to think it is the chemo killing the cancer cells. First TN then IBC, how long did it take them to cinfirm
Yes I pray often and Raphael is also my guardian angel.
I read healing psalms, I receive daily emails from the Christian bible network. I also google healing via youtube I- some are soothing I go in the direction the Holy Spirit sends me.
Ladies we got this.
I said prayers last night for all. Yes IBC comes on quick. Yes I had some attachment to chest wall which is why they did chemo and radiation before surgery. Although it did not completely reduce the tumor, it is no longer attached to my chest wall. So during surgery they will have to look at my pectoral major muscle.
My friend sent me this quote
Lord the newness of this day called me to an untried way. Let me gladly take the road . Give me strength to bear my load. Thou my Guide and helper be - I will travel through with thee. Always remember that whatever .betide you - you are never alone for God is beside you.
EBBA
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Hope everyone is doing well!
EBBA, I love that quote. Thanks for sharing.
Looking back, most of my delays and frustrations were in getting a GYN appt around the holidays, then the referral for mammogram and ultrasound. They had my mammo/ultrasound set up for March 1! Not acceptable, I called GYN back and pitched a fit, told scheduler to speak with the DR because she wanted me seen right away. Eventually got in end of January. Then there were delays due to insurance, denied PET scan, so we had to go the CT/Bone scan route. My surgeon pushed for MRI after port was placed, he wanted to get the chemo going. I know one thing for sure, I want to be an advocate and help other people in this situation, time is of the essence. It is bad enough we got this diagnosis, but to have the stress of insurance issues and test delays. I'm through complaining!
I wish you all a peaceful day, do something special for yourself.
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NatureYogi 😇 if I am reading this correctly, was it about 10 weeks from enlarged under arm lymph nodes to diagnosis. When did you start chemo? Which chemo drug?
Hopefully you have help so you are not going through this alone. 20 minutes to your cancer center is ideal. Everything under one roof.
I was delayed too, don't look back concentrate on paying it forward...like being a advocate 😘 excellent and commendable. Yes problems with insurance and Covid did not help.
A wise friend told me to buy this book, the tongue a creative force by Charles Capps it just arrived today.
The last passage on pg 12 - control those words that come forth out of your mouth and bring them into obedience to the WORD OF GOD, which is God’s spiritual law. So.... Pray the right words, like the answer, not the problems. Have faith, for once you admit defeat, the enemy has won. Pray what you desire! (One of God’s spiritual laws) and believe! God’s word is power, God gave us the same ability.
I know easier said than done. I hope this passage was also helpful. You can try and google a soaking prayer - Gods peaceful presence by Jeffrey Hardwick - YouTube. Its 1:26:18 hours long. I found it relaxing...maybe it can help.
Have faith 🙏 and pray God’s words back to him.
We all got this, stay strong 💪 EBBA
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