Anyone recently diagnosed, Feb 2014 here

amarantha

HI Optimi, I'm having exactly the same thing with the sniffles and blowing the nose with a little blood in the tissue each time. I was told it was the taxol. I'm glad we are all going through this together. I had my last chemo this Monday, and wonder how long it will take all these symptoms to subside !

Kicks

I started feeling better a week after last Taxol and continued to feel better daily throughout the 25 rads that started a week after 12th Taxol.  Neoadjuvant A/C had been a 'walk in the park' compared to adjuvant Taxol for me - but we are all so different.

Jules_NY

optimi. Thanks so much!!! The more I hear  about everyone's tax experience compared to AC the more I am put at ease!!!  

Amaranths congrats on the last treatment!!!!

Jules_NY

someone posted this on my FB page. Have to share!

Meadow

Thanks Jules love that

Jules_NY

Have to share. My BFF's 8 yo daughter is asking the guest of her birthday party to make donations to the cancer center I go to instead of gifts. I'm so touched!!! Here is a link To the web page she created so you can see what she wrote!! 

http://mskcc.convio.net/site/TR/Events/GivingSite?pxfid=37421&fr_id=1560&pg=fund

And she also got my daughter this sweatshirt. 

Meadow

I LOVE THIS! Tell your friend she is the best. Happy Easter to all

Meadow

Oh my gosh made me cry Jules!

jessozzie

Hello all, i was reading about some of you having reconstruction with IBC, i dont know who suggested its ok to do, as with IBC its strongly not recommended as of the high recurrence,your Dr must be out his mind to suggest it, after mastectomy the surgery scar is where you are likely to get a recurrence, i hope it never happens, but if one has reconstruction it wont be easy to see anything with reconstruction...please ask a reputable Dr before you do this..

Love Jess

Meadow

Jess I love your photo!. I have not heard that reconstruction is not recommended for IBC, I will definitely check into it, thank you Jess 

Kicks

jessozzie - I can assure you, my surgeon is NOT "out of his mind" and is VERY "reputable"!  He (along with my Chemo Dr and Rads Dr) all said the same thing - with IBC, have to wait a year for recon IF wanted.  Recon was not 'recommended' by any of them though I/we did talk about it.  They all gave me information (based on their specialities) for ME to make MY OWN decision - none tried to talk me into or out of recon.  There are very few (if any) here who have Drs who are 'out of their minds' or are not 'reputable' with almost all having at least talked about doing recon after the year time frame.  Actually, you are the first I've seen state that no 'reputable' Dr would ever  go along with recon after IBC and any that do are 'out of their minds'. 

Why would it any harder to see the skin signs along the MX scar if recon is done?  The scar line will still be very visable.   Metastis are (according to my Drs and all the research I've done) so much more likely than a localized recurrance in the breast.  

I (and certainly others) would like to see the documentation/studies/research to back up the idea that only Drs who are 'out of their minds' or are less than 'reputable' will go along with Recon if IBC.

Is it possible that some IBCer will never be a candidate for recon - of course!  There are many possibilities why unnecessary surgeries could be conta-indicated for some.  We are each so unique.  Also, as with all 'things'- there is no "One Size Fits All"!  

Akevia

I agree Kicks!!

Jules_NY

Even though IBC is so rare and has specific symptoms everyone's case is still different. I know reconstruction in general for IBC should be postponed due to skin involvement, rad, etc. but again that is still not 100% every IBC case. There are different types of reconstruction that can be done that have better outcomes for IBC but I don't think it is entirely discouraged. 

I think it is safe to assume that we are all being seen by reputable doctors as we go through this journey. I also think that the decisions we make with our doctors are well planned and discussed and are between ourselves and our doctors. Medicine is not an exact science. the process for everyone even with the exact same diagnosis for any illness is different. 

jessozzie

Hello friends,i hope your information is more up to date than mine regarding reconsruction, on another matter, have any of you had blisters like during radiation, my murse said it could be shingles..Yikes...i hope not...

Love Jess

Meadow

nicely said Jules, Thanks for that

Jess, I did blister, I am fair skinned, I crispy fried, peeled, blistered. I hope yours are not shingles, please let us know when you find out. Thinking of you!

Kicks

Waiting a year before doing recon with IBC has been being commonly done for at least 5 yrs.  That was what I was told by my Drs and found research to backup what they said when I was Dxd almost 5 yrs ago.  That is still what all the research I can find now says still.  No where have I ever seen anything stating that recon can/should never be done in ALL IBC.  Certainly recon is not an option in every case but that does not mean that it isn't an appropriate  option in many cases.  We are each so unique that there csn not be one TX that is correct for ALL of us.  Also our Drs are individuals who have their own ideas and experiences with TX.   

Shingles is certainly a possibility but so is burning.  Many will have skin issues from the radiation no matter how carefully they take care of their skin.  Personally I did not have any issues during my 25 rads other than a very slight pink on Day 24 and a little pinker on Day 25.  I did, though, wake on the next day with the entire irradiated  area open and weeeping.  Called Rads Dr and saw him that morning.   It rapidly progressed in how deep it was amd the amount of fluid flowing out.  I am allergic to sulfa drugs so what is usually used (Silvadene/Sulfadene), I couldn't but never developed an infection.  The burn started early March and the last scab came off the deepest area on June 29.  What finally worked to heal it was Domeboro soaks.

Jules_NY

ok so I had a sono yesterday, no more axillary node but the BC is so diffuse that they can't determine if it has shrunk or not. I'm not really sure what to make of that. I meet with the breast surgeon again on Friday to go over it with her and make some sort if plan for surgery. Anyone else have any scans in the middle of or after chemo? 

Meadow

Jules I did not have a scan between chemo. Since you are half way through chemo and it is no longer in the node, I would say your cancer is responding to treatment. I would think after taxol you will have even more progress. I am interested in what your surgeon says Friday....please let us know. I am not medical but it sounds like you are on track, making progress. Hang in there!

Meadow

Kicks your burn must have been so deep. Mine also worsened for 2 weeks after treatment, but yours sounds much worse than I had and I thought mine was bad. Glad that is in the past.

amarantha

Jules, yes, I had an MRI half-way though chemo, and the conclusion was the chemo had failed because they could see no progress. It is possible however that there was progress but just not visible, because the MRI shows, as you say, something so diffuse - and who  knows what's live cancer and what is not. They now say there is no way to really tell until the surgery. I think a TEP scan would have been more useful than an MRI. There appears to be a great deal of controversy and even in-fighting about the usefulness of TEP versus MRI, and a fair amount of confusion between the different types of doctors about what can actually be read from the MRI.

Kicks

Jules - I did both neoadjuvant and adjuvant chemo instead of the 2  neoadjuvant and no adjuvant that most do.  Did not have any scans during chemo.  The A/C started showing it was 'working' basically from the start.  When I went in for the 2nd A/C, it was obvious that it was as a lump that could be felt was forming.  It continued to become even more distinct and shrink with each infusion.  Surgery was 2 weeks after last A/C and 3 weeks after surgery, I started 12Taxol.  I did have a new CAT on the day of last Taxol but this was insisted on by my Rads Dr before I started rads the next week.

Meadow - I do have the scars to prove it! ()  Starting the Domeboro soaks was basically the last option before being sent to a burn unit .  Thankfully, it did start healing almost immediately but still took quite a while for the deepest areas - under arm, around to back and up side of neck.  Never thought having damaged nerves under arm/around to back from surgery would be a blessing but it was as the deepest of the deeper burns were in that area so I never felt pain there.   Neck was quite 'ouchy' long after the Domeboro had dried up the rest of the radiated area so continued to need Vicodan for it for quite a while.  I would not want to go through what I did again BUT I do not regret having LIVED through it - operative word 'LIVED' and still NED 4+ yrs later.  Even if I had known what was ahead with it - I'd have done everything exactly the same except would like to have been told to use Domeboro soaks sooner to dry.  There is, at times, a fine line as to what is best for healing skin - moisurizing and drying.  As you said - it's done and in the past.

For those who have not done rads yet - Do not be fearful of doing all you can to fight the 'Monster' because there are a very few of us who have more than minor problems.  We are each so different and unique.  A few go through rads (or any other TXs) with no issues, the vast majority will have some issues to different levels and then there are the very few who do experience significant issues.   There are times that I say nothing about my burning because I know many have heard all sorts of 'horror stories' about rads and do not need to hear what I went through to add to their fears.  BUT on the other hand at times - I feel that explaining what I LIVED through years ago and came out of it 'great' can have a positive effect.  Making our decisions as to what TXs are 'right' for each of us individually is just that - our own decision.   Knowledge is power.

optimi

Jules, I had a MRI scan after the A/C treatment right before Taxol/Carboplatin. The MRI showed that the major tumor mass had shrunk significantly but as in your case there was still little diffuse minor tumor masses in the breast. The main verdict was that the treatment was working. Besides the MRI scan I could literally feel the treatment was working cause when I was initially dx there was this hard solid mass in the breast. After A/C it had softened a lot.

By now (9 out of 12 treatments into Taxol/Carbo) there is close to nothing left. My oncologist is expecting a PCR. So hang in there and don't worry too much about it

optimi

Kicks, I am sorry you had to experience these complications! But thank you so much for your encouraging words. I just talked to a radiation oncologist today. Your words make me feel more at ease about the treatment.

jessozzie

Hi all,my worry about shingles is over,my Rad oncologist confirmed they are just cysts from the radiation,i am on my 20 now out of 25, and i am feeling the burning,,,i only use Sorborlene cream, anyone suggest anything better?.Has anyone had the burn right up to their necks/shoulder area? Our battle continues to fight this monster.I was watching a movie that inspired me, 300 Greek spartans that defeated 10,000 Persians.With my Greek background i feel i have the will to live and the killer instinct to combat this monster.

Love Jess

Akevia

Hey Jess, I haven't had rads yet but by the way that sounds I'm not looking forward to it. Goodluck finishing up your treatment!

Jules_NY

Ladies. Thank you so much for your input. It's amazing how different all our journey's are. This disease is so rare to begin with that  it's amazing how each of our cases are so different. The end result is what matters!!! I am so thankful that the treatment of this type has come so far, god bless those women before us!!!!

Kicks. I am so sorry you went through all that! But I am glad you are on the others side and staying there!!!! You are an inspiration. Thank you for sharing your story!!

Met with the breast surgeon. She thinks the sono was useless other than the fact that the node is gone. The MO ordered it, she said they always butt heads over doing a sono. She was more happy about my physical exam. In her experience with IBC, she said, as long as it doesn't get worse we are on the right path. She is happy that the over all appearance is better even though she can still feel the tumor is spots. I'll get an MRI after taxol. Optimi the MRI is tricky to read you are right. The contrast gets taken up by the cancers cells fast and gets released just as fast. So the reading is in real time and they have to keep comparing each captured image over and over again. And it's more with IBC it's more challenging like you said! I had a PET and an MRI before chemo. Even though the surgeon said she relies on physical exam more I want to SEE it shrink! Don't get me wrong I am happy about the news I got today. 

So far my first taxol was ok no reactions yet. Also got my biomarker meds (for HER2+) and no reactions with those either they sometimes cause tremors during infusion and diarrhea the next few days. So we will see!!! It was just a LOOOOOOONG day, was there from 9-5, MO appt, surgeon appt, and 5 hours in the infusion room. Holy moly I am tired!!!!!

My surgery is scheduled for 8/4. Right now she wants to do left mastectomy with axilarry dissection. No expanders and reconstruction 6 months after the end of radiation. She will do the other side if I decide at the time of reconstruction and I will likely have a diep flap. She doesn't think I should do both but she will absolutely honor my decision if I choose that route. My gut is telling me BMX. 

Thanks for hearing me out!!! Love and hugs!!!!!

jessozzie

Hi all,we are like a family here and what frustrates me is when one
newbie comes on seeking advice, and i have noticed we dont see them
again,if their problem was not as serious as they thought, they could at
least come on for a thank you,i am happy for them the results were
good,but a thank you would be appreciated, or at least tell us that it
was not as serious as they thought..Does anyone agree?

Jess

jessozzie

Hey Jules,i was just reading about your surgery,please let us know your pathology  results are  after your surgery,are your nodes clear? has your tumor shrunk? 

Jess

Jules_NY

will do Jess I'll keep you posted! 

I hear ya about the newbies but I honestly can't say that if it was me I'd come back and say thank you. I'd probably want to be as far away from this site as possible. Now that we are in this our perspective changes changes I think. Let's just hang onto each other.

I definitely appreciate all of you!!!

Akevia

I would come back and say thank you if I was given advise at the time of need. So I agree with you Jess!!