rob47

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 4 months ago

    Hi all,

    Sorry for not posting for a few weeks been holed up in UCLH having my SCT. I was discharged on Wednesday evening (day+14).Interesting experience walking at snails pace  out of the hospital from a air conditioned room into  furnace. It was a tough ride once I went downhill around day 7 and was pretty rough for 4-5 days but once the neutr…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 4 months ago

    Hi Adrian,

    Fingers crossed going in to UCLH on Monday morning will have a Picc line put in on the day and then the mephalan chemo. They have  a hotel building next doot which you initially stay at. The idea as I understand it is you stay there and visit the hospital each day for bloods, obs and medication. At some point when you are at your lo…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 4 months ago

    Hi Adrian,

    I had my harvest at the start of May and lost most of my hair about two and half weeks after harvesting which was a side effect of the cyclophosphomide chemo drug administered at the start of the harvesting. I was fortunate that I did not have other side effects on the cyclophosphamide, but the GCSF injections to help generate the…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 4 months ago

    Hi all,

    Thanks for all the good wishes

    Richard – I have not had any discussion with the consultants about a mini allo/donor transplant post SCT. I am having another consultation at UCLH on Wednesday so hopefully find out a bit more about treatment post SCT. I guess it depends to a certain extent the degree of effectiveness of the SCT. Good luck…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 5 months ago

    Hi Richard,

    Good to hear your into SCT process and that the harvesting went ok. I had my harvest a few weeks ago, a bit of a drama just before the harvest with an unusually severe reaction (intense lower back pains) to the GCSF injections but thankfully that was just for a short period and we got the stem cells we needed. I had to get clearance f…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 5 months ago

    Hi Andy,

    Sorry you had to find us and welcome. I was diagnosed about five months ago, and have had four cycles of VTD and am waiting for a stem cell transplant hopefully in June. Happy to share my experiences if you have any questions.

    All the best with the treatment.

    Rob

     

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 6 months ago

    Hi Richard,

    Good to hear you have recovered from your trip to A&E. Glad it didn’t stop the treatment.

    Had some good news, I went the RNOH back specialist on Tuesday and I  can now start the removal of my spinal brace and hopefully get a bit of independence back.

    I am going into London next week to have a consultation at UCLH so hopefully will h…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 7 months ago

    Morning all,

    Just about to start Cycle 4 of VTD today. Just wanted to say thanks to Greg and Alex for your positive posts and advice, encouraging to know that we get back to being active. .

    Richard good news about getting a date for the SCT. I am due to go into London to UCHL in early April  to hopefully get indication of when I can have the…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 7 months ago

    Hi,

    I don’t know if 49 (or 48) is high I have come across people who started with higher and lower, they say the range is upto 90. For me I was fortunate to start soon after diagnosis but I think that was partly due to the fact that I had quite a bit of bone damage in my lower back resulting in fractured lumbar which needed to be addressed. It a…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 7 months ago

    Hi Chevgr,

    I am just coming to the end of cycle 3 of my treatment (Velcade, Thalidomide and Dexemethasone). Whilst we are all fighting a common enemy, I understand all our situations and our reactions to treatment are individual. I understand VTD is one of the most common treatment plans, the side effects I have had are tiredness/interrupted s…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 8 months ago

    Hi Richard,

    Good to hear your good news on the light chains, and that you sound like you are moving forward day by day.

    Doing OK my pp measure has been coming down so haematology doctor seems pleased. In terms of side effects the peripheral neuropathy has improved. Still have  some back ache, I think some of it is also psychology in that I wor…[Read more]

  • Hi Simon,

    I was diagnosed just before xmas. Understand what you have been going through,  I spent nights awake in hospital asking why me? and worrying about the future. Whilst I do have off days, things have got better I am home and off crutches and getting more mobile day by day despite having to wear a spinal brace, and just finishing my se…[Read more]

  • Hi all,

    Interesting reading your posts. I can identify with the ups and downs of taking Dex. I am just coming to the end of my second VTD  28 day cycle, so I am still getting use to things but I can see a pattern emerging with Dex and the treatment. I take Dex eight times in the first two weeks of the cycle with four injections of Velcade. My moo…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 8 months ago

    Hi Richard,

    Thanks for the encouraging words. Yes MM was a Xmas present I won’t forget (I started chemo on the 23rd Dec).

    I am doing fine and feeling positive today like I want to get out and do more. I am finding the final week of the cycle OK, although I am only coming to the end of cycle 2 it is the start of the third week and coming off the…[Read more]

  • rob47 replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 8 months ago

    Richard et al,

    I am 47 and was diagnosed with MM just before Xmas. I am currently on my second cycle of VTD. So far side effects OK a bit of numbness in fingers and thigh which doctor is aware of.  It was a shock a lot happened quickly resulting in fractured lumbar and a visit to A&E, I had been suffering from unexplained lower back pains. I am…[Read more]

  • rob47 became a registered member 4 years, 8 months ago