AussieNeil very kindly suggested some people were concerenrned as to what had happened to me post transplant and asked that I post to reassure people that I am okay. So here I am, okay. I was discharged from hospital last Friday, May 29th, and to be honest I was not in great shape. The transplant had been a success - my bloods were all "normal" and I didn't need any products, but three weeks of not eating and drinking poorly had taken their toll.
A week later, thanks to my wife's cooking, I am on the mend and able to get up and about. I have three months to recover before work. Many thanks for all concerned messages, I have been deeply touched.
Regards
Steve (zentangle)
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zentangle
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Lovely to hear that Steve. I have been wondering how you've been doing. Take it easy and keep your strength up. Post when you can and let us know how it's going.
So absolutely delighted to hear from you. I think many of our community have been wondering how you are, those who write and those who lurk.
You have been through the most difficult of times and come through the transplant, that's a huge step forward. May you soon regain your health and strength and enjoy all life has to offer without any further setbacks.
I'll raise my glass to your future when I have my wine with lunch.
sending all good wishes! my husband is over 15 months post HSCT now. still working on GVH issues but the transplant "worked" and no CLL is detectable. we just have to convince New Guy to stop attacking various bits of Old Guy
Hello Steve, first of all congratulations on your recovery! I was referred to you by Paula when she found out we have similar stories. My husband Raja was diagnosed with CLL initially but it turned out to be indolent Mantle Cell Lymphoma. We are currently going to get treatment but still not sure about the protocol to follow. Can you please share with us your experience? I know you are in recovery so no rush. We just want to know more about autologous transplant from personal experience.
Reem, you can read Steve's earlier postings, by clicking on his name above his post, then clicking on the 'Posts' and 'Replies' tabs. I'm relieved you were able to get the correct diagnosis fairly promptly. Well done for including as much information as you did - the lymph nodes showing on the PET scan didn't sound right for CLL.
Hi Neil, hope you are doing well!! I want to pose a question related to Raja. As you remember he was re diagnosed with MAntle Cell and started Rituximab and Bendamustine treatment. They told us it is the indolent type. The first session went very well and Raja has been up and around and feeling energetic. Only thing is he has lumps on his neck after the second week. Dr said it could happen after first treatment. Does that make sense to you? I know you have heard many stories over the years. I just thought I'd get your thoughts on that. Ugh it's so frustrating to deal with a rare lymphoma. Makes you doubt every step. They told us it is indolent but it's in the spleen the marrow the small intestine and the blood....and now lymph nodes on neck not to mention the ones that lit up in PET scan. Can't get any more complicated 🙄
Steve/Zentangle can probably help you more and I'm sure he wouldn't mind a PM asking about this. I've not heard of lumps getting worse on CLL treatment, but I guess a redistribution of lymphocytes could be the cause. Given the doctor's comments, it sounds like an expected possible reaction, so don't get too concerned unless it doesn't clear in subsequent treatments, then ask the doctor about it again.
The wide spread involvement of the body happens in CLL too, spleen, marrow and blood and rarely the intestines and CLL is generally indolent. Bendamustine and Rituximab should clear that in Raja. Remember that lymphocytes travel throughout the body, with the only part of the body not touched being the corneas of the eyes. That's the only part of our bodies with CLL and I expect with Mantle Cell that we can donate...
Small world! Our experiences are identical and there's only 2/3 each year in the world, I was told. I had CLL diagnosis for two years, then new consultant was unhappy with behaviour of three clumps of nodes, did biopsy and found Indolent MCL. I had an auto SCT on May 10th. It was tough, but successful. They say the MCL may never return, the CLL will always be somewhere lurking, but not dangerous. Hope this is okay. It's late and I'm tired, but if you would like more info, I'd be happy to oblige when I'm more awake.
Well Steve, similar but ,may not be identical. Seems like Raja only has MCL. Well at least no one mentioned the possibility of a combo in Raja's case😐....hmm got me wondering....I guess we need to probe a bit further into this whole issue. As I mentioned to Neil earlier we are battling between several protocols. RCHOP/ RDHAP has been omitted. So now we are left with RHYper CVAD /RDHAP or Bendamustine/Rituxan all of which to be followed by auto SCT. Seems like the latter is being used for indolent MCL subtypes like the one you and Raja have at MD Anderson. They are recommending it for younger age group (Raja is almost 50) who have to comorbidities
Awaiting your feedback as I am interested in seeing the UK approach.
By the way we also have two kids (13.5 yr girl and 11 yr boy) and are worried about how to approach this whole subject with them. We realize they will be witnessing the whole transformation but we want to downplay it for them without really lying all the way ( we don't mind twisting facts a little though!😉)
I had the Nordic Protocol (3xRCHOP;3xHigh Dose Cytarabine) followed by an ASCT. This is the standard UK procedure. I was 49/50 when I had it. I didn't tell my kids - 17 and 20 - until it was absolutely necessary. I lost a lot of weight, as well as my hair during the transplant, so they had to deal with that radical difference in my appearance, as did I.
I am now in remission. The Consultant thinks it could last years.
Hi Steve. Hope you all is well with you! How have you been feeling? Back to work and life pre transplant? Is your immunity picking up? I need a favor from you. Can you please read the two posts above between Neil and me concerning Raja's post treatment neck lumps, just so I don't have to rewrite the same thing. Can I please get your comments on that? And also would like too iReally appreciate it. Thanks.
Hi Reem, I'm sorry but I don't have any experience to help with your question. I had a massive lump under my arm and lots of little lumps all over my body, which all reduced when I started chemo. But you must take into consideration that my chemo was much stronger than B& R and you need to ask in the community who has had B& R.
Thanks Steve. Right I kinda forgot you did! Desperate for answers sometimes. However as I dug deeper into some posts on CLL here on the support group I discovered that lymphedema could occur at onset of BR.
Thanks Neil,I read Steve's postings and funny enough felt like I was reading our own story. We are battling with which course/protocol to follow. I will write more about it tomorrow when we get some facts down!
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Any other members put on a lower dose of Ibrutinib after some extreme side effects? 
Cardiac side effects from drugs: Predictable?
Have others heard from the government about being classed as vulnerable because they have CLL? 
