Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
Debris

Contributing Member
Registered:
Posts: 73
Reply with quote  #1 
Hello, Friends.

It's been a long time since I posted - had quite a bit going on...

Last I posted, I was on a clinical trial with Sprycel & Ixempra, which did nothing (good) for me.  After progression, was taken off trial and started Taxotere & Gemzar.  However, at the same time, my neck issues started really going wild, with impact on voice, swallowing and some breathing issues.  Consult w/ENT to see what was happening, and he started talking to DH and me about "end of life decisions", etc.  (Downer...!!!)  Onc. very unhappy with ENT comments, said we were nowhere near that point.

It was suggested to me that I send photos of neck swelling, redness and lumps to a Dr. at Fox Chase in Philadelphia, who specializes in Inflammatory BC.  After viewing pics, he made an appointment for us to see him, and after biopsies, scans, x-rays & bloodwork, he confirmed the IBC diagnosis, which is in addition to, and separate from, the TNBC Dx.

He started me on FEC X 6, 3 weeks apart.  I've had 2 infusions so far.  After first infusion, I had a tremendous "flare", which landed me in hospitatl for observation for about 7 days.  But Dr is very happy with improvement since then, and therefore, I guess I am too.

Currently the lesions / tumors / whatever are such that I do not have much movement in my neck/head, with my head canted downward.  So I do a lot of looking at the floor!  Very uncomfortable and quite difficult for "normal" activities.  But the redness, extreme sensitivity and pain has indeed been brought under control. I'm on a pain management protocol now, of 150mg Fentanyl patches, with break-thorugh pain med as needed. (Luckily, haven't needed that very much lately.)  But I do seem to be suffereing a lot from neuropathy in feet and hands.  Feet most time feel like lumps of lead (or just plain "frozen"), while hand tingle all the time, and fingers are becomijng more stiff, and soemtimes go rigid, almost like cramp.  Have to massage them back into some semblance of movement and feeling.

Still, I'm glad I caught this apparently "in time" (in Doc's words, "just at the turning point" - not quite sure what that meant...).  I'm hoping the FEC does what it needs to do for both IBC and TNBC.

So, that brings my little story up to date.

As always, any tips or hints, esp for the neuropathy & fatigue, would be most appreciated. I do see an Integrative Medicine doctor, who has me on a number of supplements.  Don't have them with me to list here but would like to "check" them against Edge's CAM in another post, to see if there is anything additional I should be doing. 

Will take time to catch up with everyone a little later, just wanted to get back in touch after being out of it for a while.

Sending Hugs and good wishes to all.

Deborah.

__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
Primel

Avatar / Picture

La Deesse
Registered:
Posts: 329
Reply with quote  #2 

Hugs and good wishes to YOU (((((((((((((((Deborah))))))))))

I sincerely hope you'll have a break in all this suffering, you seem to have found a good specialist who cares...

Sending you all my love,

Catherine
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #3 
Dear Deb,
I am so sorry to hear about this!
I have met a few women who had IBC over the years. One of the things that I remember was that if you get a "flare" it is a very good sign that the cancer is responding to the treatment. So even though it must have been incredibly painful and sent you to the hospital- it is good to know it is kicking those cells to the curb.
We are very lucky to have Constantine here... but when it comes to IBC- we are INCREDIBLY lucky because he knows SO MUCH about it!
I am sure he will come along soon with all the hopeful and progressive information on the treatment of it.
Gentle hugs to you my friend,
g



__________________


WE WILL PREVAIL





edge

Chief of Research
Registered:
Posts: 1,129
Reply with quote  #4 
Deborah:

My apologies for not seeing and responding to this earlier.  I should be able to give you some suggestions within the next day or so when I discharge some prior obligations, but in the meantime let me just say that the field of IBC is transforming rapidly, with new therapies and so also new hope. 

Two noted IBC experts Kelly Hunt and Wendy Woodward at MD Anderson have observed (2011) that despite the significant challenges remaining, nonetheless "There have been major advances in the breast cancer field over the past few decades, and survival rates continue to improve. The outcomes of patients with IBC have also improved during this time. A large part of this success can be attributed to the remarkable developments in our understanding of the biology of breast cancer in general.", a sentiment echoed by  Shaheenah Dawood and the eminent IBC  expert Massimo Cristofanilli, who I believe you are seeing at Fox Chase (I know him and we have on some few occasions corresponded), who recently  asked the question "has the overall survival of women diagnosed with IBC improved? The answer to this question is a clear-cut yes. With the introduction of enhanced diagnostic techniques and sequential treatment with pre-operative chemotherapy, surgery, and radiation therapy, median overall survival has significantly improved."

More within the next 24 hours, and glad also to answer any questions you may have.


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com


edge

Chief of Research
Registered:
Posts: 1,129
Reply with quote  #5 

Deborah:


You can consult my just updated IBC Watch (click to navigate) which has comprehensive - and (warning!) technical - frontier-edge information on the latest and emerging most effective IBC therapies.  As  I demonstrate, there are a number of treatment options that can yield very high pCR (pathological complete response), one of which is the traditional DD-AC/T, that is, dose-dense AC followed sequentially by a taxane.  In addition, the substitution of capecitabine (Xeloda) for cyclophosphamide (Cytoxan) in the classical TAC regimen results in the TAX regimen, which is Docetaxel (T) + Doxorubicin (A) + Capecitabine (Xeloda) - and which appears to be a highly active regimen in IBC, achieving in one study (ASCO 2005) an ORR of 100% (!), and in another (SABCS 2005) an ORR of 96.6%, with some of the highest pCRs seen.  This follows from the fact that XT (capecitabine (Xeloda) + docetaxel (Taxotere)) is on its own an exceptionally highly active regimen across all metastatic breast cancer (MBC), and TAX adds the anthracycline component, valuable given the evidence for activity of this class of agents in IBC.  Another exceptional plus, is that capecitabine (Xeloda) is cross-active in both IBC and TNBC, and - still  further - crosses the blood-brain barrier (BBB) and so mitigates risk  of brain metastasis.  Hence, it is clear that enhanced AC regimens, as with TAX by adding capecitabine (Xeloda), are highly active in IBC. 

 

I also document another recent advance in IBC therapy, namely the use of a pegylated liposomal anthracycline, called PLD as with the commercial products Doxil and Caelyx, instead of the traditional anthracycline doxorubicin (Adriamycin), since it appears that  liposomal agents like PLD have especially high accumulation and penetrance in the skin, thus being almost "IBC-specific". In this connection, I have been in touch with Rosalba Torrisi's team at the European Institute of Oncology who recently (2011) investigated the use of a combination of PLD, very attractive because of both its its low cardiotoxicity and its skin accumulation and penetrance to address the dermal lymphatic involvement of IBC, together with cisplatin and infusional 5-FU (the regimen being called "PLD-PF") in a population of patients with locally advanced (including IBC) primary and recurrent breast cancer.  This regimen of PLD-PF (PLD + cisplatin + 5-FU) demonstrated substantial activity in the neoadjuvant treatment of patients with LABC/IBC primary and recurrent breast cancer. The overall clinical response rate was 78%, with a pathological complete response (pCR) obtained in 3 patients (7.7%), and partial response (PR) in 70.3%, and with 17.9% stable disease  (SD), for a total clinical benefit rate (CBR) of 95.9%.  Also important to note is that they obtained an impressive number of clinical responses (77%) and a high rate of pCR (23%) in patients with T4d tumors, these being the most challenging prognostically (14 patients (35%) were T4, with 3 being IBC).      

 

We also have data supporting the benefit in IBC of antiangiogenesis via either (1) bevacizumab (Avastin), or (2) metronomic therapy (low-dose, continuous chemotherapy) such as in metronomic AC, and other metronomic schedules.

 

Finally a specialization of mine is the benefit of certain evidence-based CAM components for IBC, based on the molecular characteristics and pathways of IBC especially those that can inhibit  NF-kB (nuclear factor kappa-B) which is strongly implicated in IBC pathology, and this includes as I document there, especially curcuminoids, EGCG, and reishi, the latter now evidenced in two recent studies.  And there are of course many other highly promising therapeutic options and advances for IBC that I document, both traditional and CAM. 

 

It was once said that IBC  was the "sphinx" of breast cancers - well, sphinx no more! 



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

Debris

Contributing Member
Registered:
Posts: 73
Reply with quote  #6 
Edge, thank you!

Been absent for awhile myself, due to huge infection in lungs, that landed me in hospital for 2 days. On two strong antibiotics now, and just had 3rd FEC infusion yesterday. (The mix of chemo and antibiotics appears to have been a little much for me today. Hard to stay out of bed, when usually I can go to the office the next day.)

I will visit your IBC watch and the related CAM guidelines as soon as I get some brain function back. Hopefully during the weekend!

(And yes, it is Dr Cristofanilli whom I see at Fox Chase.)

Again, thank you!

Deborah.


__________________
“The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
—George Bernard Shaw
nosurrender

Avatar / Picture

Moderator
Registered:
Posts: 7,476
Reply with quote  #7 
Deborah, how are you feeling? I hope the infection has cleared up and you are feeling stronger!!!

__________________


WE WILL PREVAIL





Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.