After complete remission

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So I feel I need to write some stuff down in the hope that it helps sort my mind out and also that it may give encouragement to anyone in a similar position.

I had the result today of a PET scan done last week and am in complete remission. My lymphoma was unusual and a bit like TheHighlander's in that I started off with a rare skin lymphoma although not the T cell version he has but the even rarer B cell. However, last year it transformed into a high grade fast growing Diffuse Large B Cell which blocked and collapsed a lung so needed treating. So 6 rounds of RCHOP and 15 fractions of radiotherapy later here I am. I feel that I'm in the strange position of both hoping and trusting that the high grade lymphoma has gone for good while also knowing that the low grade follicular version will most likely come back some time.

So I've read the excellent piece about life after cancer that TheHighlander pointed us to and feel that it has given me permission to not feel elated at this remission, for all the reasons the writer states. He also gives me permission to still feel fatigue and to not think that I have to get back to my old normal... a new normal will be fine and I'll get there slowly.

So for anyone facing lymphoma transformation, remission is possible and I wish it for everyone.

Thehighlander over 5 years ago

Great update Londoner12 and a great encouragement for those looking down the barrel of the Lymphoma gun.

So good that you found the paper a great help as it does answer a lot of the questions and thoughts that come along post treatment.

I wish you all the best and please keep dropping in past and helping other starting their Lymphoma journey.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 4 years ago

Thank you so much for this post. NHFL is certainly a roller coaster. My Husband was diagnosed in 2013 & he's been on watch & wait ever since. Initially his tumour burden shrunk back spontaniously but a massive lump has developed under his left armpit, it has been biopsied once to check for transformation but fortunately that wasn't the case, now a few months later & after it growing much bigger they want to do another biopsy. We are waiting for the appointment. He is well, his blood work is normal & he has no B symptoms but the thought of transformation scares the life out of ME, he seems ok & is his usual laid back self. So I did my thing to try to find something positive regarding transformation & you have supplied it. I know his lymphoma may not have transformed but I needed something to prepare myself just in case it has. Very many thanks & may your remission last forever. Xx

Londoner12 over 4 years ago in reply to FormerMember

I'm really glad my post helped. I'm still well, at home, dodging Covid. Good luck wth the biopsy, let us know how your husband does.

FormerMember over 4 years ago in reply to Londoner12

Ok so the biopsy results show that my Husbands follicular Lymphoma has not transformed, so that is very good news. However, because of the size of the tumour under his arm and a couple of lymph nodes that are slightly bigger than they should be appearing in his neck they have decided that he should start treatment. He will be receiving 6 cycles of O-CVP, Obinutuzumab instead of Rituxinab. So the next phase of our journey begins.

Glad you are still keeping well Londoner12.

Kindest regards

Bernice

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