I have a rare t cell Lymphoma called Mycosis Fungoides which is at Stage 2b which is the beginning of the advanced cancer.so far the only thing that has worked is radiation but it keeps on coming back a few months after the radiation so they tried me on a drug called Bexarotene/Targretin which,as best I can tell,had no effect on the Mycosis Fungoides at all and now I have to inject myself in the stomach once a week with another anti cancer drug called Interferon Alpha which is horrible.i’ve so far only had one shot of this so can’t really comment on it’s effectiveness but so far the Mycosis Fungoides has shrugged off;topical steroids, phototherapy and Bextarotine and cause me to have my finger amputated due to a tumour which is worrying as it is the advanced disease now.for those who don’t know, and I don’t suppose many do as it only affects about 5 people in a million, Mycosis Fungoides is the most common of the Cutaneous T Cell Lymphomas.at the early stages,1a to 2a,it’s typically indolent as long as it’s doesn’t become Transformed Mycosis Fungoides and resembles ezecma or psoriasis and gets misdiagnosed which happened to me firstly as ezecma and then as psoriasis but when it moved on to the advanced cancer,2a to 4b tumours form,lymph nodes swell,etc.
Oh wow @Kevan7, you have so much going on with all the different changes in medications and the associated side effects - it must be quite overwhelming at times and very hard when medications don’t work as well as you’d hoped they would!
First of all, welcome to the forum. Although your condition is quite rare I hope we can support you in lots of ways. Our journeys are all different but we share lots of the same issues, thoughts and feelings.
I haven’t heard of your lymphoma (I have follicular B cell lymphoma) but someone
else may be more knowledgeable than me.
Injecting yourself just be hard. I remember doing it for a few weeks following an operation and my mind had to really shut off from what I was doing. However, let’s hope the benefits show
Remember the support line are just a call away as well. Sometimes it helps to talk things through, some find it easier to write to share their thoughts - either way I hope we can continue to support you in whatever way we can.
Keep us posted on how you are doing
Hi @Kevan7 a great big welcome to our forum.
You really have gone through the mill haven’t you.
As @Nichola75 says we are all here to support each other on this forum and we all have differing blood cancers and treatments.
What I have realised is often we share the same fears, thoughts, feelings and practicalities.
It sounds as if you have gone through and continue to go through some scary, tough times, now that you have found us, and I am so glad you have, I hope you feel some support on our forum.
I look forward to hearing more from you, take care.
Yes Mycosis Fungoides is very rare and other types of Cutaneous T Cell Lymphoma are even rarer.none of them can be cured and the medical profession attempt mitigation of them.i’d never heard of Mycosis Fungoides until about 3 years ago when a huge tumour appeared on my finger along with several smaller one’s on my hand.i’d developed skin problems in about 2005 and a GP diagnosed me with ezecma as it gradually got worse the ezecma took me too the Dermatologist at the hospital and they did a 30 substance patch test which I didn’t react to causing a rediagnosis of psoriasis of course it turned out to be neither of them but Cutaneous T Cell Lymphoma and narrowed down to the subtype of Mycosis Fungoides. It’s generally a low grade indolent Lymphoma but about 30 percent of people develop the advanced form.due to a skin infection caused by it I have been on antibiotics too and have swollen lymph nodes but the question is are they swollen because of the infection or has the cancer gotten into them or a combination of the two?so I await the results of the lymph node biopsy.the last biopsy of the nodes about 2 years ago showed them to be reactive to infection rather than the MF cells being in them.
Gosh @Kevan7 you have certainly learnt a lot about your condition as well as everything else you had going on.
Thanks for taking the time to fill us in.
Take lots of care of yourself, have the occasional treat and please do keep updating us.
Great to learn more about you. Keep sharing and let us know how you are getting on
I had radiation treatment in January/February this year (21)but the Mycosis Fungoidies is coming back into my hands with blisters and patches that look like you’ve spilt hydrochloric acid on your hands,well as I’d imagine it’d look if you spilt hydrochloric acid on your hands having never done so!, and it’s proving,so far, pretty invincible to anything but radiation treatment but the lymphoma in my bone marrow is just churning out more malignant Mycosis Fungoidies cells and filling the gap of the ones killed by the radiation in only 4 months.
Hi @Kevan7, it sounds as if you have had a very scary 6 mths at least.
You describe your symptoms so vividly.
We are always here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at firstname.lastname@example.org.
How are you holding up emotionally, physically and practically?
I hold up emotionally ok about it as what can you do plus I’ve had the symptoms for about 16 years but obviously it wasn’t as bad then because I thought it was eczema and then psoriasis which are obviously very unpleasant ailments but not life limiting.If you have something a long time you get use to it even if you didn’t really know what it really was!