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?
Hi Mike
Thank you for all the information, it is really helpful. Wow I read your story and what a journey you have been on!! So pleased you’re doing well now. 
Yes we are in the UK and my husband is getting his treatment at the MacMillan Centre at UCL London. We’ve been told this is one of the best centres for Lymphoma and are really pleased with the care we have received so far. They seem to be so supportive there.
Unfortunately I think I’ve given my husband a cough now so I’m not sure whether he’ll be able to start his treatment on Thursday. 
He is going to speak to the nurse in the nurse in the morning and see what they say.
i started writing back to you yesterday but never got around to finishing it. My husband’s chemo has now been put off until Monday. They will call him over the weekend to see how he’s doing. 
Hi again Manga things like this happen, despite all the precautions bugs can still creep in.
This group is on the slow side at the moment but as you are in the uk you may want to check out…… Lymphoma Action the UKs main Lymphoma charity.
The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
All the links I use are taken directly from their website and I have actually volunteered with them about as long as I have with Macmillan……
You may want to widen your support and information base by checking them out
They run various Support Platforms…
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……
Their Closed FB group alone has over 6700 members and unfortunately you would most likely bump into me on there also ;)…. and there are a number of members with ALCL or supporting family with ALCL.
They also have a great Buddy Service where you and/or your husband can be linked up with someone who has walked the same support/treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
((hugs))
Hi Mike, once again thank you for being the font of all knowledge.
I will join lymphoma action and hopefully chat to you on there!!
