To begin radiotherapy for Cutaneous T cell lymphoma on my tummy.

Hi Gloria,

As I said before I was diagnosed with Continuous T Cell Lymphoma in 1999 and lived well with it during the first 14 years but 5 years back I did have to have stronger and evasive treatments but as of 28 months ago I am in remission ;)

The radiotherapy on a surface tumour (as basically this is what it is) should respond very well to the treatment and you will have little or no side effects.

If it's exactly the same type of CTCL as me it is also called Mycosis Fungodes and it mainly stays on the skin and during those first 14 years I was being treated by a Dermatologist. The condition is very hard to diagnose but once it is understood then there are some good treatments available. It's normal for Chemo to held back until some growth is found in the Lymph nodes or inside the body.

The point when I had to have my first Radiotherapy the tumour was the size of a tennis ball :( but 5 x 30sec treatments zapped it :)

My story is rather long so go make a cup of tea and hit my forum name Thehighlander and look through my journey.

You will have more questions so get back to me.

Hi again Gloria, I was thinking about your post at silly o'clock last night ;) that happens when you help out on the Community ;)

Lymphoma is a cancer of the blood so should not be confused with solid tumours or even Skin Cancer. The fact that they cut out the areas of your skin would not have removed the cancer activity as it is in the blood that feed the various layers of the skin. But it did give them a sample to test and pathology results are the only way to diagnose CTCL. My team had to take 7 biopsies as it was never conclusive,

It would be good to talk with your team about getting the opinion of a Dermatologist as they do have maintenance treatments that can keep the presentation on the skin under control without continually using Radiotherapy. But once the condition moves up the stages and starts to effect large areas of the skin, the Lymph-nodes or grow in the body then throse treatments are the way forward.

If you have had a look at my story my Dermatologist did a great job in keeping the condition under control and it was only when it decided to get aggressive I was referred to Oncology then to Heamatology then finely to my Syem Cell Transplant team.

Its important to ask questions to make sure that your team are not using a sledgehammer to crack a nut. Thy are most likely correct in what they are proposing but they may well be looking at it through their normal treatments and not through a Dermatologists eyes, it's worth a question. 

A fibal reassurance, blood cancers ate very treatable. The development of new treatments have seen a huge rise in good effect treatments with folks just like yourself getting through this and out into remission.

Always arround for questions. 

Hello Katy Lou...I suppose it depends what sort of radiotherapy you will have. I can speak from experience though.

Good to hear from you , I do hope you are doing well. Are you still taking Bexarotene?

The developments in treatments over the years is great :)

My team did send me to Newcastle to look at having the TSEBT after my first Stem Cell Transplant did not work but after long discussions we felt that the areas that required treatment needed to have a short sharp hit so I ended up having three weeks 3/4 times a day of spot radiotherapy on every area of presentation. It was hard work by the end and we were away from home staying in a hotel in Glasgow for the time then went straight into the SCT unit in Gkadgow for a further 4+ weeks.

Keep well.

Hello Highlander

Yes I’m still on Bexarotene I’m on the 18th week now. There has been little improvement.Maybe the lower legs are slightly better but the trunk is still bad and that face still active. I saw the dermatologist a month ago and his view was that it was not working. In discussion he agreed to let the drug run to 20weeks which seems to be the median time for response. I am back on to see the haematology consultant. The opinions seem to be switching me to Interferon Alpha.

I’ll keep you updated 

For a time I was having PUVA and Bex at the same time and helped as the PUVA pushed it back and the Bex started to keep it from developing but eventually it just went totally out of control.........but I seem to remember you may be at your PUVA max....... when my big tumour started growing in my forehead we thought that we had caught it with the Interferon Alpha but it just overwhelmed the treatment.

All the best with the treatments 

Hi Ridgeway. Thank you so much for your reply. Really helps to hear from someone who is going or gone through this awful thing. I can't take it in yet. at the moment all I have had is two tiny raised spots on my lower tummy about two inches apart. But both were cancerous of course. I'm really frightened that more will appear. I'm going for talks regarding radiotherapy tomorrow . I hope I will have the localised one you had. The only other thing I've got is I ache like flu symptoms and tiredness. This is a scary time and I thank you again for being in touch. Im so glad I found this site and the kind folks on it xx

Well over a year on ..... a lot has happened. I was switched to Interferon Alpha . In mid March 2018 I was hospitalised with sepsis. I had open sores all over. The industrial intravenous antibiotics worked and the lesions started to heal.By the end of May I had very few open lesions, I was still on Interferon but the lesions were not really shrinking. At this point I insisted on PUVA. I had 6 weeks of low dose PUVA.. I did not finish the treatment because of skin soreness. I was placed on 63 MIU per week of Interferon but this destroyed me. I spent most days lying on the couch. By September 2018 the Interferon was reduced to 30MIU per week. I felt much better and the skin was very much improved. In November 2018 I was placed on Interferon and Bexarotene. I had hardly any side effects. The skin improved more.BUT. I then developed severe neutropenia.. readings from 0.3 to 0.8. They should be at least 2.0.,This means I am serious risk of sepsis.

Both the Bex and Int were reduced but there has been no improvement in the neutropenia.Skin has worsened but still not bad ..MSWAT is 10..

i am now on 6 MIU per week of Int (just 2 injections per week) and 6 tabs (75mg each) per day. I guess this is not enough.

Due for a biopsy soon to see if the skin is CD30+ This is a protein on the T cell which might indicate the lymphoma is getting more aggressive.

I know that I have the disease since 1986..33 years

so I am doing OK..I hope!

Hi , thank you for your update. Reading through this is transporting me back over my many years.

The treatment of CTCL can be a massive challenge but there are some new treatments coming on line all time. 

I was only directed down the Allo Stem Cell Transplant route as my Lymph nodes became involved.  

I did see a report about Mogamulizumab being licensed for the treatment of mycosis fungoids as I was originally diagnosed with MF then changed to CTCL

Mogamulizumab licensed for the treatment of mycosis fungoides

https://lymphoma-action.org.uk/new-treatment-mycosis-fungoides-or-sezary-syndrome-ss

All the best and keep us up to date.

hi do you have any recomendations for skin soreness