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3rd Clinical trial!

po18guy's picture
Posts: 1187
Joined: Nov 2011

But not for cancer. Rather, trials are being conducted to learn how to combat Graft-versus-Host-Disease for transplant patients. And, since I have a touch of that, I inquired about trials. I am treated at SCCA/Fred Hutchinson, so trials are their daily task. They found one sponsired by Moffitt Cancer Center in Tampa that combines high-dose steroids with the monoclonal antibody drug Arzerra (Ofatumumab) - think 'Rituxan class' drugs. The thinking is that Arzerra's destruction of B-Lympohcytes will impede them from triggering T-Lymphocytes to attack the host body. Precious little is known regarding altering or interrupting cell-signaling in the human body, so this is a chance to learn. And, if I do not benefit, those after me will. And, I have another treatment available if it is not effective in my case.

It is good to think about participating in clinical trials if they are appropriate, and even better to sign up. Medical science is advanced only through trials and I think we all want to see more effective and less toxic therapies. You are never locked into a trial, and may exit if you wish. But, the chance to receive cutting edge drugs years before they hit the market is a distinct advantage. I had 4 1/2 years complete remission from one such trial (Romidepsin).

All the best to you folks!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Po and everyone,

I have participated in two clinical trials over the years. The most relevant was a study of whether anti-depressant based diabetic drugs work on chemo-induced neuropathy.  Chemo-induced neuropathy has a different causality from diabetes-induced neuropathy, although the symptoms are similiar.  My participation was in 2010, and the RN contact told me the tiral was appearing to be a failure, but I have read that as of 2013, a popular drug was in use against chemo neuropathy; I am uncertain of this. The results I read were that while it helped some patients somewhat, it was not a stellar success. I am not a researcher and my view is certainly not that of an authority.  I know that it helped me none at all.   I was told repeatedly prior to 2013 that no FDA approved drug specifically for chemo-induced neuropathy existed, and have not asked since.  Numerous herbal treatments have been sold for years, but were not then FDA certified.

The two drugs that most commonly and severely cause chemo-induced neuropathy are vinblastine (in ABVD) and vincristine (in CHOP, EPOCH, and many other combos). 

Neuropathy, when it occurs at all, increases with dose. It usually mitigates over time after treatment is ended, but can remain significant for years, or even for life, for some patients. I still have it significantly after over five years of chemo cessation. I especially cannot keyboard well, and cannot turn pages in magazines or the newspaper without wetting my fingertips. A post this long can easily take me over 30 minutes to write, so frequently must I fix spelling and other errors due to my fingers.

I was also part of a trial in 1997, to test if a very popular anti-depressant was good for a syndrom other than clinical depression, which I also had.  The drug was approved for the condition as a result of that trial that I participated in.

Both of these were rewarding learning opportunities.

A friend who died of prostate cancer in 2013 benefitted from two drugs that had been approved just before he took them: Zytiga and Jevtana. These drugs extend life for prostate cancer patients for whom hormonal therapy and chemo (Taxotere) no longer work.  HIs life was extended probably a year or so by these (then) relaltively new drugs, which I also had oppoutunity to learn about.  Irony of ironies: A year after his death, I was diagnosed with Stage II prostate cancer, but I was thankfully knowldegable from the get-go on that disease.


po18guy's picture
Posts: 1187
Joined: Nov 2011

After the first infusion of Arzerra (Ofatumumab) and the fairly massive steroids, I did not notice the incremental daily change, either way. However, this past week both doctor and nurse-practitioner had a good look at me. Both were impressed with the improvement in my legs partiularly, and in my skin overall. That was an epiphany for me and it struck me that the incessant itch was nearly gone. My ankles could flex consideerably more and my calves were no longer incredibly tight. Skin rash and redness was basically gone. I did not want to make the 2 hour round trip and waiting times - but I am certainly glad I did.

Posts: 1
Joined: Apr 2017


I am a 50 year old male living in Australia

I was diagnosed with Peripheral T Cell Lymphoma (NOS) in 2016.

I have completed 6 rounds of Choep-14 and then one round of DHAP chemo.

We are now looking at the option for new drugs that are available for my next round of treatment.

We are investigating the following options;


Romidepsin (Istodax)




Does anyone have any experience with these drugs and PTCL?

We are looking to start treatment using one of these drugs asap.

Thanks for your help

po18guy's picture
Posts: 1187
Joined: Nov 2011

Sorry to hear of your diagnosis. After CHOEP-14 followed imediately by GVD (Gemcitabine, Vinorelbine, Doxil), I relapsed immediately. I went into the trial of Romdepsin and completed 64 cycles. Was in remission for 4 1/2 yers, but then relapsed/mutated into PTCL-NOS + AITL. Tried and failed Belinostat, Alisertib and Pralatrexate. Had Bendamustine as part of TREC (Bendasmustine, Etoposide, Carboplatin) which was my 5th salvage regimen and put me in shape for transplant. My history:

 07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed - Progression.
01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
02/24/15 Pralatrexate/Failed - Progression. 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control skin GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 3 clinical trials and 4 immunosuppressant drugs.

Hae you consulted with Dr. Miles Prince? He is one of Oz's recognized T-Cell specialists/experts.

I am a moderator at www.cancerforums.net. We have several Aussies there, several T-Cell Patients, and Lymphoma as well as Transplant forums. Have a look.



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