Hi everyone, my husband aged 56 has been recently diagnosed with Stage 1 Alk negative Anaplastic large cell lymphoma and has been told that he initially needs 6 rounds of BV CHP chemotherapy starting this Thursday. I was wondering if anyone else out there has been diagnosed with this and how they responded to the chemotherapy. I understand it is a very rare form of lymphoma.
Also any tips on nutrition or how to help him feel any better during this time would be greatly appreciated. Thank you.
Hi Manga and very warm welcome to the Macmillan Community although I am sorry that you had to find us and especially sorry to hear about your husband’s Lymphoma diagnosis.
I am Mike and I help out around our Lymphoma groups.
I don’t have Anaplastic large cell lymphoma (ALCL) and yes ALCL is rare……. but in general T-Cell NHLs are all rare.
For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well……. I was also diagnosed with Asbestosis in 2012 and Prostate Cancer this April past.
Here are a few helpful links from the Lymphoma Action website.
Top tips for the day of your chemotherapy
Top tips for family, friends and carers
Top tips for healthy eating…… he is basically on a pregnancy diet.
Top tips for avoiding infection
Top tips for coping with fatigue
As I said I was diagnosed in 1999 but my main intensive treatment had to start once my second T-Cell appeared having to be treated for both my T-Cell NHLs at the same time this was between Oct 2013 to Oct 2015 ……. this was rather complicated (See my story) but I am coming up to 11 years out from my last treatment, I turned 70 last Nov and I doing great.
Once you have worked through the info I have given you do come back with any questions you have ((hugs))
PS….. are you in the UK? and if so where is he getting his treatment?
