Godspeed – Barbara. I didn’t know you – but from the writings you shared you sounded like a strong, fascinating person.
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Yes that’s right – we did touch base in the spring. Thanks for your reply. I’ll post on how our son is doing. He will be staying with us – we’re calling our place his rehab. Center – and will I’m sure drive him crazy with protocols to avoid infections. From what I’m gathering – video games will be his means of staying sane during this time. I’ve offered to teach him to knit – not interested. 🙂
Hope you continue to do well – it’s good to hear from other folks with this same rare version of Hodgkins.
Hello – I noted that you said you have a rare form of Hodgkins that you are receiving rituxan for. Is this NLPHL?
That is what my 27 yo son was diagnosed with a couple years ago. His was pretty advanced. He was successfully treated with RCHOP, but unfortunately it returned shortly after he finished treatment. Docs at Wisconsin Carbone Cancer Center and at Mayo recommend an auto stem cell transplant as the best chance for putting this behind him. That’s what we are heading into now. He actually feels fine – but the Doc’s conclusion is we should treat aggressively now.
It’s difficult because this form of Hodgkins is so rare -they don’t have a lot of research re best treatment- and the disease seems to vary quite a bit from person to person.
My son handled earlier course of chemo just fine – hoping that means the conditioning chemo for the transplant won’t be too awful.
Hang in there with your treatment.
Thank you for your very thoughtful reply. We are trying to prepare as much as we can. Your info helps!!
Thanks for your reply! He was diagnosed in 2017 – went through treatment first with Rituxan and then RCHOP. Was in remission- but activity showed up with his 6 month PET scan. Docs at Mayo and Wisconsin Carbone Cancer Center strongly recommending stem cell transplant.
He handled the RCHOP just fine.
Hope you are doing well!
Hi – he has finished one cycle. He’s doing okay – except for fatigue. He’s working some while going through treatment – which is what he wanted to be able to do. The anti nausea drugs work well for him. Needless to say the whole thing is pretty stressful…
My son (26) is going to have an auto stem cell transplant for relapsed lymphocyte predominant Hodgkin’s lymphoma. He is currently undergoing pretreatment chemo – they anticipate 2 or 3 rounds will be needed to get him in remission before extracting stem cells.
A question. I’m trying to get a better handle on timing – and the variables that can affect timing. For those who have been through this – what was the time period between when a decision was made for you to have a transplant – and having your stem cells removed? Were you given a window of time for all this to happen, or were you told that specific steps needed to happen in a specific schedule?
How long in the hospital?
Thank you for your insights.