New to group and newly diagnosed

Hi Thunderbird and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Cutaneous T-Cell Lymphoma CTCL and this was treated for about 14 years then things changed as things become aggressive so a new biopsy fund Peripheral T-cell lymphoma cells and this was to point where so required full on treatments…… this was in late 2013 and I had reached Stage 4a.

So ask your questions.….. as I know this journey rather well.

Hi, Thank you so much for the reply. I have so many questions, I don't know where to start.

Bit of background on me. In 2013, age 50, I was diagnosed with Hodgkins Lymphoma. Six months of chemo and one month of radio therapy followed. I was just coming up on 10 years in remission when I got my diagnosis of PTCNHL. I am still reeling.

Like you, I am at stage 4a and I am awaiting results of a bone marrow biopsy, as I had cancer in my bone marrow in 2013, I fear similar news this time. 

I am not sure what is an acceptable question to ask. So please tell me if I am asking or saying anything that is not allowed on the Forum or that you fell I should not be asking. I am also struggling with working out if I dare ask a question. The fear is of getting an answer I cannot cope with.

Would it be alright to ask what full on treatments you received? 

How were you, physically? I am thinking of side effects, particularly with the more aggressive  Chemo and other full on treatments. 

KR

Colin (Thunderbird).

Hi Colin Thunderbird sorry to hear that the beast had come back in a different way…….. there are no questions off the table.

Rather than me put a lot of information in this post - make a strong cup off coffee or for me a Single Malt and look through my my long story by clicking on this > LINK as it takes you to my profile.

You can then set out some questions from there.

Hi Mike. I have read your story. You are amazing. I cannot believe what you have been through. 

Hi again Colin Thunderbird everyone’s story is amazing in my book - we all have to do what we have to do to keep ahead of the beast  Any questions you have just put them up in your post.

T-Cell Lymphomas are rare so there are not a lot of active group members at times….. but I am always around to help out.

Hi Mike. Yes, I am aware how rare TCL is so there won't be many contributions

Did your treatment follow  a plan of chemo, then as soon as you were in remission, the stem cell transplant? I am sure you won't be surprised to learn I am somewhat anxious about the transplant.

Colin

About 700 people are diagnosed with T-Cell NHLs every year in the UK with 1 in 3 being PTCL - NOS so about 230 people a year are diagnosed. So about 4 in a million chance of having PTCL - NOS with my type of CTCL being 7 in a million.

My main chemo was used to open the door for going into Allo SCT…… I had not had any chemo before……. and it’s important to realise that I was not in remission going into both my SCTs as it was impossible to get me into remission.

My chemo was from late Dec 2013 through to 26th April 2014 and my first Allo SCT started 1st June 2014 with me 4 weeks in the SCT unit.

I was told that the Stem Cell graft had failed on 24th Dec 2014 so I went back for my second Allo SCT on 1st Oct 2015 and had 3 weeks of radiotherapy then 4 weeks in the SCT unit)

I talk with many people who have been through SCT and most people will say that the process was not as bad as it had been made out to be by the consultants…… consultants have to highlight the worst case scenarios.

Has SCT been mentioned?

Hi Mike. Yes, SCT is on the cards. The plan is a 3-4 cycle of CHOP, then a GD carbo regime and then an autologous SCT. 

I guess I should look for the SCT forum. I know from my previous experience how important positivity is. I am however very down at the moment.

4 in a million? With those odds, why can't I win the lottery?

Colin

Thunderbird said:

With those odds, why can't I win the lottery?

If only !!!

Important to realise that Auto SCT has lest problems compared to Allo donor SCT as in Allo the immune system try’s to kill the stem cells and this can develop issues.

Yes do join the dedicated Stem Cell Transplant as this brings a different group of people who have navigated the SCT rollercoaster.

I also volunteer with Lymphoma Action.

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.

They run regular Support Platforms that has more traffic then in here..... I highly recommend these groups as there is nothing better than talking with others who have walked the journey.

There are a number of folks on the LA  platforms who have PTCL -NOS

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey including SCT.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Thank you Mike. I was aware of Lymphoma Action.

I will take a look again, thanks to the links you have provided. 

KR

Colin