[cartdawParticipant]

Hi Ian, Peter and Andrea   Hope you are all doing ok.  I have been home now for nearly 4 weeks after my SCT at the HAllamshire Hospital in Sheffield.   I am doing OK now and starting to feel more human.  I had a problem with sickness all the way through it really and mucositis mainly in my throat and Gastro. Intestinal tract.  Very painful.  The staff were amazing and on top of it all with Iv meds thank goodness.  The worst part only lasted 5 days but it seemed like forever.  I was in for 22  days.  Managed in the hospital flat for 10 days which was brilliant as it gives you more freedom but then had to go into hospital as felt too ill to manage on my own.  Feeling so much better now .  On the whole not as bad as I was expecting.   Dawn xx

[angeParticipant]

Hi Dawn, so pleased to hear that you are doing so well, I was very sick too but did have nasogastric feeding which made me put on weight! The most scary think was trying not to be sick with it in! It took a long time before I could eat ice cream again. I found Diflan was the best mouth rinse and still use it occasionally. It took me a long time for me to recover my strength. If I over did things it would really set me back so I would advise you to take it very easy and listen to your body. I’m glad it was not as bad as you were expecting though!

Hope everyone else is doing okay. My paraproteins are around 9 now and I feel so much better now I have decided not to go back to work. I will have my immunisations next March and maybe do something different when I feel up to it.

Best wishes Andrea xx

[cartdawParticipant]

Hya Andrea, Ian, Peter and all   Just an update I have had my results 3 months after SCT and feeling very happy, pp 2 and bone marrow normal,  hope it lasts, feeling well now probably able to return to work albeit reluctantly, thinking of retiring,  I know nothing is guaranteed with mm but for now I’m happy,.  Hope you are all well and happy new year xx

[iangParticipant]

Hi everyone

Dawn, that’s great news, I’m very pleased for you. I wish you a long remission. I sometimes wonder if you have to suffer pain during the SCT to have a good remission, as in your case, whereas if you have a relatively easy SCT it doesn’t work as well. But I could be wrong. I’m just about to start my 10th cycle of Revlimid + Dex, it’s amazing how the time flies by. My pp was rising post SCT but since starting Revlimid it has been fairly stable in the low to mid 30s.

I was in the happy position of being able to retire early, long before mm, so I did. This was partly prompted by seeing a number of work colleagues over the years looking forward to retiring at 65 and then dying either before or not long after retirement. I enjoyed the work I was doing, but I also enjoy the freedom of retirement. It’s been great, and as for not knowing what to do, which some people say, I don’t know how I found the time to go to work.

Andrea, it’s great that your pp is also stable at a nice low figure. 9 is good. Re trying something different, have you got a bucket list?

Peter, I wonder how you’re doing? I went to the Infoday in London which was very interesting and quite upbeat about new developments in treatment. Let’s hope we’re given the opportunity of benefitting from them.

That’s strange, I don’t seem to be able to scroll up into the early part of this post to check it’s ok before submitting it. I use an iPad and I used to be able to. But things change and I haven’t been on for a while.

Happy New Year to you all and to everyone else on the forum. Ian

[pc452Participant]

Hi All,

That’s really fantastic news, Dawn, that your SCT has produced such an excellent result, even though you had to go through a lot of unpleasantness to get there. Really delighted that you’ve now got over the nasty effects of the high dose chemo. Like Ian, I’ve wondered if you get a better result from the SCT if you have a bad time; but everyone assures me that’s not the case! Anyway, long may your remission continue.

Really delighted to hear that you are doing well, Andrea, and are more settled after your decision to retire. Best wishes and good luck in finding your new “normal”!! This Myeloma thing does rather change one’s perspective on life.

Good to hear, too, Ian, that the Revlimid and Dex (there’s always Dex!) are keeping your PPs stable. Hope the treatment isn’t causing you too many problems and you are feeling well.

I’m pleased to report that I’m still managing “off-treatment”. Post transplant my ppq was 13. It’s since been down to 10 and up to 14 and, as at last month’s blood test, was back at 13 again. SFLC was 146, post SCT, dropped to 134 but has crept up to 194. But my blood counts are good, my kidneys are functioning well and I’m feeling fine, so I’m just being monitored monthly for the time being. Fingers are well crossed though! I am still having the zometa infusions monthly, and swallowing Aciclovir and calcium/vit D tablets several times a day.

I was advised to add the pneumococcal jab to the flu jab this year, too. Again, no side effects! I’m beginning to suspect that my body just shrugs when it gets another load of foreign molecules to deal with!!

Hope you all had a jolly festive season. My CSN said “Well, of course!” I could go visit the grandchildren, so we did, and had a great time. And didn’t come back with a cold,  thank goodness, just Christmas presents and a lot of photos of the kids!

Well, keep on keeping on, everyone. The days are getting longer, so Spring must be on the way; although, it seems as if Winter has decided to get in the way just now. We had snow this morning! Which reminds me, I do hope none of you have had any problems with the recent weather. We’ve been ok here but everything is extremely soggy in the garden and the fields around us; and most days it just doesn’t seem to get light. More finger crossing is in order, I feel!

Take care.

Best wishes,

Peter

[angeParticipant]

Hi all and Happy New Year! Glad everyone is keeping okay. That’s great Dawn, a good response so long may that continue! Ten cycles seem a lot Ian, good that you are coping with it. How long can you stay on that? Nice for you to be treatment free Peter and good that the paraproteins are not causing any trouble. My paraproteins 2 months ago were 7.8. I had my next bloods done ready for clinic tomorrow but was then informed my appointment has been moved 3 weeks away. I was a bit annoyed because I would have waited 3 weeks to have the blood test. I don’t suppose it really matters though! Our first grandchild was born on 1 January 2016 in Dublin so we have been to meet Alex (our gorgeous little grandson). There will be may more visits as I will be helping out so have no wish to think about work!

Hope everyone keeps well

Andrea xx

[Author]

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