CHEMO SUCCESSFUL - NOW ONTO STEM CELL !

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My husband has AML diagnosed end of December.  First Chemo didnt work, then onto Flag IDA and Venetaclax, which bone marrow biopsy this week has told us he's in remission with incomplete blood counts.  Pleased with this as we were very worried.  

On wards now to Stem Cell Transplant in Bristol.  Does anybody have any tips, ideas, stories they could share?  

thanks

furbabymummy x

  • HI furbabymummy

    I can totally understand you concerns and worries, I have been on this same journey you are travelling.

    My wife was diagnosed with AML in October 2018, had 3 rounds on chemo over 7 months and then the dreaded Flag ida. Got into remission in May 2019.

    Sadly relapsed in December 2020. Like your husband was given venetaclax and chemo injections over the 7 days and 3 week breaks between. Got into remission once again and then prepped for SCT.

    Had her transplant in August 2021 at UCLH, spent the 7 days in the Ambulatory care unit (hotel) near the hospital and went daily for conditioning treatment prior to day 0. All went well, she was and has been extremely lucky as she did not have ANY Gvhd or infections and continues to do so well today. She is able to do most things and has now been having ALL the vaccinations we have a children and is over half way through. Got a few more in June and them the MMR in Oct.

    The SCT process is very simple in respect of the administration of the cells, it's usually via iv drip.

    The conditioning can be difficult to some people as no two people will react to the drugs in the same way.

    Make sure he keeps as fit as possible and tries to eat as much as possible and drink plenty of fluids.

    His team will give plenty of advice and he/ you MUST ask any questions or concerns you have.

    There is a drug called MALPHALAM which will be given a day or so before the SCT. This drug can in many cases give mouth ulcers and sores, the Hospital may well have ice or ice pops for him to sick on. If not try and get these for him as they are a great help in preventing sores in the mouth. 

    My wife was in the unit for 2 weeks before being discharged home, this is fairly quick but she did do very well as stated above.

    Your Husband will have plenty of return visits to the unit following discharge and especially over the first few weeks and possibly months. 

    My wife went 2 days after discharge and then 2 times a week for about 3 weeks them once a week for a few weeks. Luckily after that only once a month for 3 months and now only 6 monthly telephone consultations.

    Every patient will have very different recovery times and different symptoms after the SCT. There are however very similar symptoms to be aware of these are generally

    FATIGUE, MUSCLE WEAKNESS,  APPETITE LOSS.

    IT IS VITAL THAT YOUR HUSBAND TRIES AS BEST HE CAN DOESN'T RISK PICKING UP ANY VIRAL OR BACTERIAL INFECTIONS.

    This may mean keeping away from busy public areas, sadly be very aware of family and friend's visiting him and absolutely never if they have cold/flue and most definately Covid Symptoms.

    His immune system will be at very high risk for some time, His team will constantly check his bloods for his immunity and I strongly suggest you take all reasonable steps to keep his safe.

    Hopefully after a few weeks/months his immunity will allow him to start socialising more, but cate MUST BE TAKEN even then. It can take 12 months or longer before a safer level of immunity is reached.

    I could wrote so much more but please do reply if you would like any further help or advice on this.

    There are many people on this site that have been through this process, either as a patient or a carer as you and I am. The journey is always shared and the roller coaster does get smoother.

    I wish your husband well and fingers crossed his transplant goes successfully.

    Take care

    FULHAMBOY (NICK)

  • Good news  and onwards.

    You will find the links below helpful

    Checklist for SCT Unit

    Melphalan and Ice

    These are also relevant but taken from the Lymphoma Action Site

    Having a stem cell transplant

    Top tips for stem cell transplants

    ........ and if you hit my community name you will see my journey.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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