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Primary refractory Hodgkin's Lymphoma

nave_yli
Posts: 1
Joined: Mar 2019

My boyfriend was 2/3 of the way through AVD (Dropped Bleomycin after the first 2 cycles because it was causing lung toxicity) when a PET scan revealed that the cancer was growing back. Today he's getting a biopsy from nodes near his lung to confirm the Hodgkin's diagnosis before he starts a clinical trial that includes ICE chemo and Brentuximab. The surgeon said the first two lymph nodes they looked at were reactive from the chemo but didn't look cancerous, but that he took a lymph node they "think" they'll be able to test to confirm the diagnosis.

I'm wondering if anyone's ever been told they had Hodgkin's and then found out it was a different type of cancer or Castleman's disease instead... or something along those lines. I'm also curious if there's anyone out there who's survived primary refractory hodgkins, or had success with ICE and Brentuximab?

It's hard to keep up hope after the first treatment failed. I was hoping before... now I'm just... scared.

po18guy's picture
po18guy
Posts: 1168
Joined: Nov 2011

Some forms of Hodgkin's are easily mistaken for Anaplastic Large Cell Lymphoma (ALCL), a rare and aggressive T-Cell Lymphoma. On another forum, a 26 year old young man just lost his life to such a misdiagnosis. And that was at a major center. If something as easily treatable as Hodgkin's is not responding as expected, I would immediately suspect the pathology report. See if you can have the biopsy sample re-evaluated at a National Cancer Institute designated comprehensive cancer center. Find the nearest center here: https://www.cancer.gov/research/nci-role/cancer-centers/find 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

nave,

I wholly agree with all Po said.  HL is seldom refractory from the beginning in first-line therapy.  There is a stong liklihood that he has something else.  It is manditory that the new biopsy results be back before beginning ICE, since you do not want to treat the disease incorrectly twice.

ICE is the most common second-line choice for HL that is presenting as aggressive, so the success rate must be pretty good. It is also routine as prep for for SCT with HL, while B & R is now the most common for relapsed indolent HLs that won't go away.   I have studied this somewhat, and if my indolent HL were to ever relapse, I would request B & R only, at least initially, and would likliy refuse SCT.  I would accept ICE or R-ICE if needed, however, but without SCT.

Success, again, however, is knowing what the ICE is fighting against.

max

po18guy's picture
po18guy
Posts: 1168
Joined: Nov 2011

TREC (Bendamustine, Rituxan, Etoposide, Carboplatin) was trialed at SCCA and a few other clinics, IIRC, against various relapsed/refractory lymphomas - including Hodgkin's. It is out-patient and far less toxic that ICE or any of its versions.

And, it was not aimed at all against the very difficult T-Cell Lymphomas, but absolutely eradicated both T-Cell varieities that I had (PTCL-NOS, AITL) plus MDS in my marrow - in two infusions. Stage IV-B to stage 0 in two weeks. Doctor called it a miracle.

Worth asking about, as it is a new combo of existing/older drugs.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3627
Joined: May 2012

Great information regarding TREC, since ICE is indeed harsh, frequently requiring inpatient application.  The issue must be the Ifex and Mesna used in ICE, since two of TREC's other drugs (Etoposide and Carboplatin) are also in ICE.  Also, ICE is routinely given in very high dosage, when used to eradicate the existing immune system in prep for STC.

po18guy's picture
po18guy
Posts: 1168
Joined: Nov 2011

I am trying to make it better known, as it is by design, less toxic, much easier on the organs and is intended to be as effective. In my case, it was simply amazing. I was fighting three cancers and the primary cancer (PTCL-NOS) had defeated 13 drugs, and the secondary AITL had defeated 4 drugs before they were hit with TEC (TREC minus Rituxan). They simply folded and went away, never to be seen again. The MDS was a litle more problematic, persisting as minimum residual disease in my marrow even after transplant. However, as we loosened the noose around my new immune system, it seems to have eradicated that, as well. 

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