Greetings from the other side

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)

29 Replies

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  • Great news Steve. Keep well and get strong.

  • That really is wonderful news Steve and I'm delighted to hear the transplant has been a success! I can imagine it's been very hard going at times.

    Take time to regain your strength and look forward to much healthier times.

    Great news and thanks for the update.

    Newdawn

  • 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.

    Peggy

  • Wonderful news.

  • Good news! I wish you a fast recovery 😊

    I had my allo transplant 45 days ago.

    Keep us informed about your health please 🌸

  • Hope you are fine, Ausrine. I've been thinking of you.

  • That's great news Steve, keep up the good work and I'm sure with the help of your friends and family you will soon make a full recovery.

    June X

  • Thanks so much for the update, Steve. It's a great relief to hear that you are OK. Good that you've got another 3 months before going back to work.

    Take care,

    Wishing you all the best,

    Paula

  • Wonderful news to hear Steve for both yourself and your wife. Enjoy the summer.

    Sue

  • Great news, wishing u the best!

  • Fabulous news.....and keep eating!

  • Steve,

    Screw work. Don't rush it. Then it's time to......πŸ’ƒπŸ’ƒπŸ’ƒπŸ’ƒπŸΎπŸΎπŸΎπŸΎπŸ·πŸ·πŸ·πŸΈπŸΈπŸΈπŸΈπŸ»πŸ»πŸ»πŸ»πŸ»πŸ» and continue to πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ™πŸ»πŸ˜·πŸ˜·πŸ˜·πŸ˜·πŸ˜·.

    I'm so happy and excited for you. Stay strong.

    Jeff

  • Great news Steve, Terry

  • Hi Steve

    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.

    Best wishes

    Bubnjay1

  • Cheers!

  • Great news Steve - so glad you are doing so well.

    Take care

    Netty

  • Fantastic news! Stay well.

    Paul & Fran ☺️

  • Good news Steve, all the best for the future.

    Wiganfan

  • go, Steve, go!

    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.

    Thanks,

    Reem

  • 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.

    Neil

  • Hi Reem,

    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.

    Regards

    Steve

  • 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!πŸ˜‰)

    Well Steve any advice is helpful.

    Keep getting better.....

    Enjoy life....

    Reem

  • Hi Reem,

    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.

    Regards,

    Steve

  • Hi Steve! We finally made our decision after much thought and research. Starting Rituxiban/Bendamustine treatment on Monday. We hope for the best!

  • 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!

  • Great to hear of your great progress Steve. May it last indefinitely!

    Newdawn

  • Good to hear from you Steve and so pleased at your successful outcome after the physical and mental trauma of treatment.

    Just want to wish Reem and Raja lots of luck, and success with treatment.

    Bubnjay1

  • So glad all is going well for you.

    Peggy

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