[dinoParticipant]

Avril,

That is good to hear.

Chris,

Many thanks for your comments and words of support, very welcomed.

[dinoParticipant]

Avril I am under Jenny Craig for the STC, my CDT was at Peterborough. My clinical nurse is Bev. Yes the whole NHS has been brill. I am glad you are in remission I have been since August. I decided on the STCbecause I was advised the remission period averaged 18 months. I went to an infoday and spoke with others who have had STCand also one of the consultants who were very positive on the procedure. What ever you choose good luck for the future. If you are local me and want to shoot the breeze let me know I would be happy to meet up.

Graeme(Dino)

[dinoParticipant]

All,

I have now started the path for Stem Cell herapy. Last week I hadd the initial/ chemo followed by injections to grow the white cells before harvest. I am due in tomorrow for the harvesting at Addenbrookes.

The chemo went well with no side effects. They gave me Dextamethasone, the steroid and that gave me wind and reduce my ability to go to the loo – nothing changes there LOL.

Got to yesterday teatime and all going well except headache when the little white cells started trying to burst out – well has what it felt like. My lumber region is throbbing or pulsating and I could not settle. Went to bed and my wife ended up in the spare bed. Today still got back ache and toothace. Paracetamol has done nothing by I have taken Co-codamol an that seems to be helping.

Really strange but in minor pain and uncomfortable and I keep bursting out laughing – really weird.

My Clinical Nurse Bev is an absolute brick and has been emailing me as needed. The nurses are briliant and dont get enough praise.

The discomfort is a minor price to pay for extra remission. I will let you know how thww harvest goes.

[dinoParticipant]

I went to the Oxford info day and had great conversations with those who have had SCT and those that give it. This has helped a lot for my forthcoming SCT. As I am in remission I managed to have a weeks holiday in York- certainly recommended.

And to the crux, tomorrow blood test, Tuesday chemo and the start of the injections and 8th the harvest. What a fun packed 9 days I will be having and fitting work around it. I now have a date of 4th Nov for the procedure and hopefully fully fit before Xmas.

I will add to this ‘blog’ as I go. All for now, Graeme

[dinoParticipant]

Michelle

I have just read your story and am pleased all is going well. I was diagnosed in Mar 15 and am in remission since late Aug. I go for STC in Oct and am scared to say the least.

It would be good to see your dietary regieme in a page of the magazine (Myeloma Matters?) which would give others assistance. I to have a reasonable diet thanks to a caring veggie wife. Did that help me get to zero blood count, who knows. Glad to hear about your holidays, we are away before STC starts.

Please keep us informed of your Oct results

Graeme

[dinoParticipant]

Helen so sorry to hear about your biopsy. I had one at the start of Treatment and then at the end to correlate to the blood tests.

The first carried out by the consultant was not nice but bearable. The second was by the F1 overseen by the registrar. She did a good job ( I was her 5th ever) but did require 2 attempts to get the bone. Being a man who does not like pain I left their bed soak from sweat. They said the a/con in the room was rubbish. These procedures are never nice but I look at the Oncology ward and the treatment others are going through and am grateful I am not going through theirs.

Keep your chin up and I hope everything goes okay.

[dinoParticipant]

I collapsed with kidney injury inMarchto be told that I had Myelom, my PP found was 38.

I started CDT in early April and the count went down from 38 to 9 to 5 to 3 to 1 to 0. I was advised that only 20% hit zero PP. I Have seen Addenbrookes consultant (I have been treated at Peterborough hospital) to discuss STC and was advised that it would give 12 months extra remission on top of whatever the CDT would give. I thought about not having the STC until I was told the remission without is on average 18 months. This changed my mind and I have the procedure end of Oct. MM appears to be different for everyone therefore take my information lightly as I don’t think the Doctors really know enough yet. Good luck on whatever you decide to do.

I have put a question on the forum regards to SCT and others response to the treatment. Please go read the replies all positive to SCT.

[dinoParticipant]

I would like to thank all those that have replied to my post. It is reassuring to learn how each of you managed during and after your treatment. AlthoughI will still go through with the treatment the 4% mortality sits a little heavy although so does the average 18 months remission if I just felt on CDT. I will add to the forum either during or after the treatment hopefully to assist others following on the same path. Thanks again for your replies.

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