Anyone with IBC and triple neg?

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Danni1
Danni1 Member Posts: 57
edited June 2014 in LGBTQA+ With Breast Cancer

I am 46 yrs old and have no family history of any cancer of any type.  I had left shoulder/bicep surgery in January and was diagnosed in April with left breast IBC.  I am in neoadjuvent chemo with AC/T now and will have surgery in late August and then radiation.  It seems to be unusual to have IBC and be triple negative.  I would love to hear from any other lesbians with this diagnosis and hear survivor stories too.     

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  • JustJean
    JustJean Member Posts: 327
    edited July 2010

    Hi Danni, welcome to the group I'm sure you didn't want to join.

    I am not triple negative so I can't speak to what you are asking, but wanted to say hello. I just had my first AC chemo last week, had a bilateral mastectomy on May 5, and feel like I should be doing better than I am. I will have have four AC treatments two weeks apart and then four T treatments two weeks apart and then 5 weeks of daily radiation. So we have that in common.

    Sorry if this seems... foggy... I've had a foggy day today.

    JJ

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    Hi JJ,

    Thanks for saying hello.  I totally understand being foggy.  I have had 4 rounds of AC and 2 so far of Taxol (every 2 wks) and I have 2 more to go.  The chemo has made me very forgetful and made it hard to do simple math and think of words sometimes.  But it does seem to be going very well.  Everything has been shrinking and the oncologist is very happy with my progress.  I have had very different side effects with the AC versus the Taxol.  AC made me sick to my stomach but I took Emend for that and it really helped.  The Taxol or the neulasta after it make my bones ache really bad.  I take tylenol for the pain and it eventually gets better.  Hope you don't have any bad side effects. 

    You're right about this being the group I didn't want to join.  But there have been some positive things to come out of this.  I have learned who my friends are and made some great new ones. I  don't sweat the small stuff anymore and most things are the small stuff.  I've also started making a list of three things I am thankful for every day. I just try to enjoy life to the fullest and think positive thoughts.  Keep in touch and let me know how you're doing.  Good Luck!

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  • JustJean
    JustJean Member Posts: 327
    edited July 2010

    Duh... I'm so foggy today I didn't see that my post had posted... so never mind this one... I'm really going to miss my brain.

    JJ

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  • ebann
    ebann Member Posts: 3,026
    edited July 2010

    Well I am not a lesbian & do have friends that are. I had IBC & am TN too. I am a 1 yr survivor so far. I plan on being for a long time. I have to do 3 Pet Scans a yr for 5 yrs. My chances were poor 30% but I bet the odds. You can do it too. I did chemo for a yr. I did Taxotere/Cisplatin, then AC/Cytoxan then had my mx then had + nodes &  spread to my chest. So more chemo Taxol/Carboplatin w/ rads at the same time. My tumor they removed was 12.5cm (the size of a baseball) I hope you like your Dr. & feel good about them. I loved my Dr. Do what is best for you....IBC & TN are not a death sentence

    Blessings, Elizabeth

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  • sftfemme65
    sftfemme65 Member Posts: 790
    edited July 2010

    Hi Danni,

    I didn't have IBC but I am trip neg.  I know that foggy feeling, it will get better before too long.  Hang in there!

    Teresa

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    Hi All,

    Thanks so much to everyone for replying to my post.  I appreciate hearing everyone's stories and getting your support. I would especially like to hear from Ebann as you have IBC and TN just like me.  It's nice to know that someone else is fighting the same battle and winning.  We are all winners. 

     I just had my third taxol treatment today and all went well so far.  I have one more chemo treatment left and then will have  a PET scan before surgery. The Dr told me several weeks ago that the lymph nodes had shrunk back to normal and today he said the tumor has shrunk about 80-90%.  Hopefully, it will shrink more after today and then again after the last chemo treatment too. Take care and keep fighting.     

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  • ebann
    ebann Member Posts: 3,026
    edited July 2010

    Danni, you can ask me whatever question you need to. I will answer them to the best of my knowledge. Or I will find the answer. You are more than welcome to PM me or we can discuss it on the board.  I am so glad to hear that things are shrinking that is a positive sign. Believe it or not mine shrunk too. Glad you are doing well w/ the treatment. You can do this!

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  • twosparrowsflew2
    twosparrowsflew2 Member Posts: 23
    edited July 2010

    Hi Danni, my name is Priscilla and I too am IBC triple-ve.  I completed 6 rounds of chemo FAC and am now up to my last 5 treatments of radio which unfortunately has had to be postponed due to skin breakdown.  I know from what I have read here that everyone reacts differently to each form of treatment.  For me chemo was ok, mouth ulcers, dry mouth and taste affected me the most and aching all over made me feel crap for a couple of weeks after.  Compared to some I was very lucky in this regard.  Radiotherapy has proved worse for me.  My burns are horrendous and the centre of my chest (unfortunately the Sentinel Nodes were affected) where electrons only are used so the heart does not suffer to badly has broken down badly.  For me also having had a LB mastectomy the skin seems to be affected more easily.  One thing that I have so much appreciated here is the support and knowing that no matter what or how you are affected there will always be someone who has been through it and understands.  Again as everyone says - you will get through it!!! Just make sure you lean and learn from the right people - the others you don't need, it is a battle that only the strong and courageous can handle......and that is us!!!  Love and hugs your way.  XXX

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    Hi Two Sparrows,

    Thanks so much for replying to my post.  I never wanted to be a member of this club but I really appreciate hearing from others that are in the club.  You and Ebann are blazing the trail ahead of me and it's good to know that it can be done.  I'm sorry to hear that you're having so much trouble with the radiation.  I haven't had too much trouble with the chemo and so I almost consider this the easy part.  I think the surgery will be rough but the radiation even more so.  You're right about the support.  I appreciate getting support here and through the Rocky Mountain Cancer Center and from my family and friends. I couldn't do it without them all.  Please let me know how you're doing through all this.  I will be sending positive thoughts your way. 

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    Twosparrows,

     I just read your info and noticed that you had a wrist injury and then were diagnosed with cancer.  Did you have surgery for your wrist and was the injury on the same side as the cancer?  I am wondering because I had shoulder surgery in January and noticed a rash at the end of February.  I was diagnosed with IBC on April 3rd and the cancer is on the same side as the surgery.  In fact, I have scar from the shoulder surgery that is under my armpit and is about 3 inches from where they did the biopsy for the cancer.  I also have lymph nodes that are affected in that armpit.  Seems like there's a clue there somewhere.  What do you think?   

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    Ebann,

    I just read your story and saw that you had surgery too right before your diagnosis.  As you can see from my post to Twosparrows, I had an injury and surgery too. Somewhere I read about a possible link between wound healing and cancer. Do you think there is any link between surgery or injury and cancer? 

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  • ebann
    ebann Member Posts: 3,026
    edited July 2010

    No I do not think they are related. How long did your injury and surgery take place? Mine was 2 years ago before IBC. I have not read anything about wound healing and cancer.

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  • twosparrowsflew2
    twosparrowsflew2 Member Posts: 23
    edited July 2010

    Just wrote a long essay and lost the lot.....Upshot was that not only the wrist - but I had a major car accident in 2007 which fractured my sternum and left me in an induced coma for 2 weeks.  Bilateral pneumonia etc.  The issue at hand is that my left breast was black,purple,blue and all other colours under the sun from the seatbelt as well as accross my belly.  I showed my surgeon the photos which are fairly horrendous during the time of my surgery but she was reluctant to make a connection between the two.  I have the photos of the injury and if anyone can help me download to this site it would make very interesting research. 

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    I just wanted to check in and see how you're doing.  Has the fog in your brain cleared a little?  Everyone says chemo is cumulative and it sure is in my brain.  Just as the fog starts to clear, it's time to get it again. I will take all the side effects though as it seems to be working.  Hope you're doing good. 

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    My surgery was January 12th and I noticed the rash in February.  I was diagnosed on April 3rd.  The surgery site was very close to the location of the breast cancer. I don't worry about finding out why I got cancer.  Instead of saying "why me, I say, why not me?"  I think the reason it happened is because God or whatever higher power you believe in, knows that I am strong enough to handle it. I am interested in cancer research so I will try to find the article on wound healing and cancer and post a link to it here. 

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  • Danni1
    Danni1 Member Posts: 57
    edited July 2010

    Twosparrows:

    I think all this is interesting from a research perspective.  I know it won't make a difference for me but it might help others.  I will try to find the article on wound healing and cancer and post it for everyone to read.  Hope you're feeling better. 

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  • twosparrowsflew2
    twosparrowsflew2 Member Posts: 23
    edited July 2010
    Danni1, Yes it is all very interesting.  I did not have to have surgery on my wrist although I was waiting for a referral to a surgeon in Brisbane when I discovered the lump.  My xrays etc all show quite clearly where the uptake of cells were which was in my wrist and Sentinel nodes - both areas of which correlate directly with the 2 previous injuries.  Anyway I was talking to a friend of mine who is a veterinary surgeon and his thoughts on the matter have always been that any disruption to normal cells eg, accident, injury etc do alter the physiological make up of those cells, therefore making them more prone to cancers.  My treatment post surgery....of which I had 4....x2 lumpectomies, mastectomy and then next day haematoma drainage.....has been straightforward compared to what I have been reading here from others.  6 rounds of chemo, then 25 rounds of radiation.  As of today I have 3 more to go.  My surgeon and I agreed that we could not continue with the electrons to the centre of my chest because of the skin breakdown.  But we have continued with the other 3 planes.  I am happy with this so at least those 3 planes will have the recommended dose of radiation.  If we hadn't agreed to this I would not have continued as I was in so much pain and my chest was weeping green pus and had broken and raw skin.  Now it is slowing healing and I am at the point where I can leave this area unbandaged.  My GP also gave me some tablets for the folliculitis which has greatly improved the frustrating itch.  Hope all is going well.  Keep us posted as to how everything is going.  Priscilla XXCool
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  • Danni1
    Danni1 Member Posts: 57
    edited August 2010

    I just wanted to check in and see how it's going for everyone.  I also wanted to update you on my status.  I have finished chemo and had another round of tests (MRI, blood, PET) and I got really good results.  My CAC27/29 is 21 and my CEA is down to 1.2.  The Dr says that is in the normal range so the chemo worked.  He said that is the best result you could ever hope for.  I also met with the surgeon and I told her that I want a double mastectomy.  I don't want to have to worry about the other breast later.  I won't have reconstruction with the surgery as I don't want it to interfere with the radiation treatments.  I will decide whether to have reconstruction at a later date if it's even an option.  Surgery is scheduled for Sept 9th. Please let me know if you have any suggestions for surgery recovery. 

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  • JustJean
    JustJean Member Posts: 327
    edited August 2010

    Hey Danni,

    Good to know that you're doing so well!

    I had reconstruction immediately after my bm and was one of the few that really regretted it. I had it taken out three weeks later, and have no plans of doing any reconstruction. There are pros and cons to having it done either immediately or delayed.

    Check out the surgery boards, if I remember correctly there's a whole thread there about prep for surgery and the things that happen afterwards. If I could go back and do-over anything, I'd get some kind of belt to put those darn drains into, it was such a pain to have to pin them to the post-surgery bra or the inside of my shirt or onto a lanyard in the shower.

    I'll be keeping you in my thoughts!

    JJ

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  • Danni1
    Danni1 Member Posts: 57
    edited September 2010

    Thanks for the idea to check the surgery boards.  They had some very helpful info.  I also started a board for those of us having surgery in September.  I'm having my surgery this coming Thursday so I probably won't be checking here for a few days.  Hope everyone is doing well and I'll talk to you next week. 

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  • Danni1
    Danni1 Member Posts: 57
    edited August 2013

    I just wanted to update everyone on my wonderful news.  I had a double mastectomy 2 1/2 weeks ago and it went very well. The chemo before the surgery killed all the cancer and the surgeon was able to remove it all.  I was T4, N3, MX before and I am T0, N0, MX now.  My oncologist said that my results are why he went to medical school.  The surgeon couldn't believe how well the chemo worked. She couldn't even tell how many lymph nodes she removed as they had been destroyed and left in pieces by the chemo.  I am still going to have radiation just to be sure that we got it all.  So, I just want everyone to hear my results and feel encouraged.  We can beat this thing together.  I will check this thread once in a while to see if there is anything new.  Good luck to Twosparrows and everyone else too. 

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  • Lovegolf
    Lovegolf Member Posts: 513
    edited September 2010

    So glad to hear positive news...

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  • dee1961
    dee1961 Member Posts: 1,672
    edited October 2010

    Congratulations Danni1 on your good news!

    Peace and strength to you :) 

    D~ 

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  • Danni1
    Danni1 Member Posts: 57
    edited October 2010

    Went to the Susan G. Komen walk today in Denver.  It was really inspiring to see all the supporters and lots of survivors too.  Hope everyone can go to a similar event in their area.  It's so encouraging and everyone in this "club" is so nice. 

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  • lindaa
    lindaa Member Posts: 119
    edited November 2010

    Good news for you Danni1!!!  I am TN with IBC (I hate that I know what means now!).  I started chemo in June - carbo on day1 of cycle, taxol weekly for 3, then rest 1, avastin on the first and third treatment.  Mine is in lymph behind sternum and collarbone.  I have seen some on here with that and they call it stage IIIC, but they staged me at IV.  My last scans showed good progress, but I have a new pea sized spot that can be felt on my neck.  I'll have another CT scan next month, and hope to see someone at Dana Farber or Brigham Womens, or Mass Gen for 2nd opinion and verify treatment path (still trying to pin it down).  I hope I get to have surgery at some point, but the avastin creates slow wound healing issues.  I would have to come off chemo for 6 weeks before surgery, and another 2 to heal, and there is concern that the length of time will allow an opportunity to grow again.  I am so happy for you and it gives me hope too. 

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited November 2010

    Hi Danni1,

    I too had IBC & triple neg.  I didn't realize that I was triple neg until another teacher at my school had triple neg breast cancer.  I had not check out info of triple neg because I didn't know it applied to me.  My doctor always referred to my IBC as being ER- & PR - and Her2- and because of that I wouldn't need to take the other drugs after chemo. I finally put 2 & 2 together.  Thankfully I am 2 years NED, officially on Wednesday!

    I hope you doing well. NJ

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  • Danni1
    Danni1 Member Posts: 57
    edited November 2010

    Hi Lindaa and Mrsnjband,

    I'm sorry you both are triple negative and IBC but I'm glad you found this thread.  I've been wondering if there are many of us out there.  I was diagnosed fairly quickly with IBC and the next week they told me I was triple negative.  I didn't even know what either of those things meant but I could tell from the look on the doctor's faces that it wasn't good.  Of course, I researched everything on the internet and the prognosis for both parts really scared me. I decided that even though the odds were against me, I was going to be positive, take the good from the situation and beat cancer.  Thankfully, I have a great oncologist and and a talented surgeon. My radiologist seems to be good too and I'm not having too much trouble with rads.  I have 17 more treatments to go.  

    Mrsnjband: Congrats to you tomorrow.  It's great to hear some good results. 

    Lindaa, When I was diagnosed the doctors went back and forth over whether I was a IIIc or IV.  They thought they saw a spot on my liver during the PET scan but they couldn't find it on biopsy and during later PET scans. I had started chemo right after the first PET scan so they think the chemo may have killed it.  They still aren't sure what level I was but it all appears to be gone now.  I have a friend that was diagosed as stage IV with mets in her lungs and she has been NED for 2 years now.  So I know we can beat this thing.  I will be sending you lots of positive energy.  Keep me updated on your progress. 

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  • ebann
    ebann Member Posts: 3,026
    edited November 2010

    Hi, I had IBC & am TN. I have been NED  for 1 1/2 years. Just had a PET Scan on 10/12/10 and it came back with suspicous spots in 3 areas. So they had me to MRI's with contrast and without contrast. So Thursday I am having a biospy they are saying that the breast cancer has spread to my bones. They are doing the biopsy on my hip. They found spots on my femurs, spine and hip. So I do not know till next week what is going to happen. I wish everyone the best for it is not easy having IBC & being TN.

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  • lindaa
    lindaa Member Posts: 119
    edited November 2010

    I do see that a lot of TN have had AC Taxol DD.  I am on carbo/taxol/avastin.  I wonder what the difference is?  I just with another long term stage IV (8 years - lungs) who said taxol/avastin has held her steady for the last year.

     I did ask my onc to go as aggressive as possible but I'm not certain he did that.

    Also, on mx, was there skin involvement/rash?  How do they work around it?

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  • lindaa
    lindaa Member Posts: 119
    edited November 2010

    I just noticed this thread is in the 'Lesbian' forum.  If it could somehow be moved to the triple neg forum there might more ppl who find it.

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