Peripheral T cell Lymphoma unspecified

Hi R from Dorset and a warm welcome to this corner of the Community although I am sorry to hear about your wife's diagnosis. I am Mike and I help out around our various Lymphoma groups.

This will sound very confusing but over my 24 years living with and being treated for my NHL....... my diagnosis has moved between Peripheral T-Cell Lymphoma - Not Otherwise Specified (PTCL-NOS for short) and a type of rare, incurable Continuous T-Cell Lymphoma (CTCL)...... that is how complicated Lymphoma can be...... but we eventually went ahead and treated based on the CTCL diagnosis but in reality there was no significant difference in the treatment route followed.

I was first diagnosed way back in 1999 at 43 eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

I have also had two Allogeneic (donour) Stem Cell Transplants (Allo SCT)...... although the term Bone Marrow Transplant is still used by Heamatologists the reality is they actually mean SCT not BMT as the BMT process is never done now. Stem Cells are now taken from peripheral bloods (like giving blood) making it much more straightforward.

Leading up to my first SCT I had 6 cycles of R-EPOCH, this is big brother of CHOP. The R-EPOCH was used as the key to open the door for me to go into SCT..... at the time SCT was my final role of the dice........... my journey is rather long and complicated but you can follow this link to See my story

There have been a few folks pass through this group but also through our dedicated T-cell lymphomas group over the years.

You can put PTCL-NOS or Peripheral T-Cell Lymphoma - Not Otherwise Specified into the search tool  near the top, select 'Anywhere' and this will bring up all the old posts and as always you can hit reply and see if the members are still looking into the site.

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

Always around to help more or just to chat

Very sorry to hear this. Sadly, CHOP is a B-Cell Lymphoma regimen, but is often the only weapon to use against T-Cell Lymphomas. If that is what NHS uses, then that is what one must go with. I had CHOP+Etoposide, (CHOEP) but I am in the states. Therefore, one must bear that in mind when considering what I have to say. Even after high-dose CHOEP-14 (two week cycle) followed by high dose GVD for two additional months, the lymphoma immediately relapsed. 

I entered a clinical trial of Romidepsin (aka Istodax) and remained in remission for 4-1/2 years. Romidepsin has been approved in the US and Oz and I believe Canada for years now. I would imagine that both EU and UK health authorities "may" also have recognized and approved it. There are precious few treatments available and none with a truly high degree of success. I would certainly ask about it.

This is a case where one must be the squeaky wheel in order to gain attention.

thanks Mike for your detailed advice. If Gail's white cell count is OK she will have her 3rd chemo this Friday and then a CT scan on 14th June after which I hope we will have some idea if the chemo is working. She was back in hospital last week for 3 days due to a raised temperature during which time they found that she has a heart rumour which was a surprise. We hope that this will not bar her from SCT. I shall ask about R-EPOCH when we talk to the Dr this week but guess they will wait until after the CT before reviewing current treatment.

Thanks for being there

Randy

thanks for your message, I shall do some research on your info and yes I intend to be a very squeaky wheel

Cheers

Randy

Hi Randy R from Dorset infections and ‘other’ health issues do come along. I should have said that we do also have a dedicated Stem cell transplant support group as well and when she goes on that part of the journey it’s a good place to get specific support for the SCT process.

Keeping everything crossed that all her treatment is kept on track.

Thank you for your info.

Between chemo 3 and 4 Gail had a ct scan which shows that her lymph glands have reduced except the one from which the biopsy was taken. She has now had chemo 4 and her Salisbury consultant is suggesting stem cell transplant which will take place at Southampton. Due to her age (67) she is only 50/50 for this procedure, she is having a lung test and being sent to Southampton for a 2nd opinion. Between both her previous chemo sessions she has been readmitted due to viral infections which we are told is not unusual with CHOP. The consultant says that her lymphoma is rare and therefore difficult to prophesy how any treatment will affect the disease.

From my readings it seems that if she does not have the transplant the CHOP will reduce the lymphoma but not cure it which will result in further flare ups and further chemos.

Your thoughts on all this would be appreciated 

Randy

forgot to say thanks for the suggestion of  checking out Lymphoma Action which we have found to be a great source of info.

Randy

Many cases of T-Cell Lymphoma ultimately sound like a horror story. I underwent a litany of chemo and biological drugs to get into remission for transplant. At the end, my haematologist (who does not like the "nuclear option" of transplant) admitted that we had run out of drugs to use against it. My final combination consisted of Bendamustine, Etoposide and Carboplatin and it was only with a certain degree of hope.

Nevertheless, against the odds, it placed both lymphomas in remission and reduced the marrow cancer (MDS) to "minimum residual disease." Since the MDS was slow growing, that was acceptable for transplant, at which point I was 63 yeas of age.  The only acceptable donors were my two children, as no other matches were found, either in 2009 or in 2015. 

It all seems surreal, in looking back now. I have just now passed the 15 year mark since it all began.

Hi Randy R from Dorset thanks for your update. 67 is well within the age range for SCT…… I have recently talked with folks in their mid 70s who have successfully been through the process.

I had to have significant lung function tests as I also have asbestosis but back in 2014 SCT was my only real hope so although there were ‘concerns’ we agreed it was worth the risk as not going with SCT I would only have a few years on the clock.

Infections are par for the course during these treatments so this is not a big factor for going towards SCT…… having a rare Lymphoma can be an added challenge but from my first hand experience living with one of the rare ones it can be done.

The initial hope is that SCT provides long term remission……. then the further you get from that SCT day the more chance that this can be much long than first thought……. to the point that I was discharged back in June 2018 and I don’t have appointments and was told get on with life……. and I am doing that and not looking over my shoulder for my NHL to creep up on me.

Good that a second pair of eyes are taking a look…… they will do significant tests just to make sure there are no hidden health issues…. but on the whole it would need to be serious issues to stop her going on to SCT.

I could not be put into remission so could not have an Auto SCT so had to go down the Allo (donor) SCT route and even after some string treatments I still went into both my SCT with active cancer……… we just had to let the remnants of my old immune system fight it out with my new (brothers) immune system,