SCT

Hello glad to hear your paraprotein levels are dropping  steadily. I had sct in February  this year. It's quite surprising  how the memories  fade once you start to recover. From what I recall I had one session/infusion of about two hours of cyclophosphamide which I think was to get the stem cells going and then you're right about the injections at home which stimulates the stem cell growth.  None of that was too bad and I felt ok though began to get incredibly achy in my lower back towards the end of the injection phase. This is apparently due to all the millions of stem cells that are whizzing around your bloodstream!

  Once the harvesting was done the aches and pains vanished. Then a few weeks later I went in to hospital and had the high dose melphalan which I think was about half an hour infusion during which time you're  encouraged to swallow as much ice lollies as you can to ward off the dreaded mucositis. I will never ever be able to face an orange flavoured Calippo again. Then the next day my harvested cells were returned.

The next few weeks  are to be honest a bit blurry! I can remember just feeling increasingly weak and wobbly as the days went on. My mouth and throat did get very sore and wasn't  really able to eat or drink for quite a long time but I didn't actually have mouth ulcers. Then there is rather a lot of time spent in the bathroom with the inevitable sickness and diarrhoea! The staff are so caring and attentive and do their absolute best to relieve these symptoms if they can.

However I was able to avoid any infections and I have had a complete response to the treatment so all worth it in the end I guess. 

I wish you the very best of luck with it all. It's tough for sure but ultimately you get there! Suex

Thanks Sue this really makes things clearer for me now, I think that is exactly the process I will be following. I'm so glad you are in complete remission, that is so encouraging for me to hear. One question, what meds to you have to take now in remission? I'm hoping to get off everything and try an holistic approach to staying in remission if I can get there.

Thanks again, ddaw73 x 

Hello again you were asking about meds now that I'm in remission.  I only have 3 monthly blood test and zometa infusion and see my local haematologist  every four months. It's what is called "watch and wait". I was taking anti sickness and anti viral when I first came home fro  the transplant but luckily the sickness didn't last too long. However did suffer quite a bit with digestive issues for a long time but this isn't unusual I was told.

I will apparently  be having my childhood immunisations again at the GPs early next year and I have recently had a flu jab as advised! 

Hope everything goes really well for you. Be kind to yourself. 

Suex

Thanks again Sue. So I found out I will be having cyclophosphamide on 21st Jan in the hospital followed by 10 days of G CSF self injected at home. Up till then I carry on with my cycles so I will get to cycle 5 which I didn't think I would need but hey ho.

The meds after treatment don't sound too bad from your post, I wondered if you also suffered any spine issues (curvature?) and height loss? At 5' 7 I cant afford to lose too much :-)

Watch and wait sounds a bit like a ticking time bomb but if you read up on life expectancy for stage 3 myeloma (which is what I was diagnosed with) it really gets depressing, probably I'm best not to read that stuff.

Be glad to get the SCT all over with but I know I have to be patient, I'm not good at waiting.

 Hope things continue well for yourself,

ddaw73 x

So you have a plan for the New Year now. It helps I think to be able to see the way ahead. It is a long slog as you say and it has taken me a long time to accept my situation. As you say "watch and wait" is not an easy place to be. However I belong to a cancer support group and I think it's true to say that we're  all looking over our shoulder really even those who might hope they are cured as such. A cancer diagnosis changes you forever I believe.  Somehow we have to find a way to live our lives without that peace of mind we all enjoyed before!

Be careful what you read. You're right some of the stuff out there on the internet  is very depressing and may not even be accurate.  Its always worth remembering that this is a very individual disease and I'm not sure that the statistics are necessarily a true picture or at all helpful!

I had a collapsed vertebrae and a few tiny lesions on my sternum and clavicle on diagnosis.  There is no sign of the lesions now and new bone has grown which has helped my spine. I've no pain in my back or ribs anymore and luckily no height loss. I am only 4' 10" to start with!!

Good Luck with the next stages of treatment.  One step at a time and you will get there! They always say myeloma is a marathon not a sprint!

Best wishes for a peaceful and restful Christmas. 

Suex

Thanks Sue, your advice and support is much appreciated. I have also joined my local support group and the next meeting is in Jan just before my cyclophosphamide so I'll be asking a lot of questions there.

I'm ready for the marathon... I think.

Best wishes to you as well for the Christmas festivities,

ddaw73 x