[puyarnaudParticipant]

I certainly hope so Mulberry because I am not too keen on STC as I know of two sufferers who did not do too well and had complications arising.

To Ian,

I had not heard of radiotherapy as a treatment for MM. I hope it is working for you. There are two of us in this house with cancer, my wife has a a blood cancer called Polycythemia Vera and is on daily chemo taken at home. My daughter is 10 years post lymphoma but it never ocured to us to take out insurance. I think that is very far sighted of you to do that. Well done.

Roger

[puyarnaudParticipant]

Thank you Mulberry.

I received my 2nd dose of lenaliomode yesterday and a comment from the consultant which indicated I might be on for years.

Roger

[puyarnaudParticipant]

Morning Pauline,

Reading of your difficulties with your GP, I feel you should be demanding that he refers you to haematology who will test your blood and either confirm myeloma or perhaps MGUS a precursor sometimes to MM. As we are now well into October perhaps you have already been referred.

Roger

[puyarnaudParticipant]

addendum

Sorry Martin, I didn’t read your post carefully enough. We seem to have so many different regimes and I don’t recognize any of yours. None of mine have involved anything more than a subcutaneous injection in the tummy. Now I take my chem at home. I hope the STC goes well for you, I am in two minds about having STC if offered.

Roger

[puyarnaudParticipant]

Hi Martin,

Today I am with my haemo consultant followed by a Zometa infusion in the clinic. Zometa because my blood calcium level is too high. It was that which alerted endocrinology many years ago that something was amiss and it was they 7 years ago who wrote to me to say that the tests for MM had proved positive. Imagine the shock then when I went to Dr Google to find out what MM is.

Enjoy the day.

Roger

[puyarnaudParticipant]

Hi Martin,

I have MM and my wife has a blood cancer Polycythemia Vera. She has a forum which is extremely well supported and very supportive. This forum does not seem to be and people are left for weeks without anyone responding which seems very strange to me.

I was very lucky as I have been monitored by haematology for the the last 7 seven years. At first it was MGUS so I half knew it would become MM, no shock there when it was confirmed in October 2018 However treatment didn’t start until May this year. Unlike others I still have no idea of what “bone pain ” feels.

I don’t know if it is evening with you, for me it is 8.45 and I am off to do bloods for tomorrows consultant meeting.

Roger

[puyarnaudParticipant]

I am a 75 yr old male and since May of this year have been receiving treatment for Myeloma. I am now on my third different regime of treatment. The first included thalidomide and left me with periripheral neuropathy. Too high a dose of thalidomide and nobody told me I could argue the dose. Eventually the clinical nurse specialist stopped the thalidomide.

In August I statrted my 2nd regime of cyclophosphamide taken with dexamethazone at home. This didn’t work for either. In September I had 2/3 weeks off treatment and have now commenced with 25mg of lenalidomide taken at home in capsule form. Review is due next week.

Reading comments about having lenalidomide private makes me wonder if I have had to go the two other routes before they will bear the cost of the lenalidomide.

[puyarnaudParticipant]

Try and persuade your sun to let someone go in with him. It is so important not to forget info and to ask questions.
Both mywife and I have blood cancers, she an MPN and I MM we go to Blackpool for her and I or a friend always go with her. She wouldn’t dream of letting me go on my own so has been to all the previous consultations.
We both know we hear different things.

Roger

[puyarnaudParticipant]

That should be 4 week cycle not $

[puyarnaudParticipant]

It seems from reading other posts that there are many different drug regines so to help others mine is as follows:

$ week cysle.

Velade days 1, 5 ,8 and 11 by subcutaneous injection into tummy
Thalidomide 50mg days 1-14 evenings
Dexamethasone 20 x 6mg days 1-5 and 8 – 11 morning with food
No other chemo for the last 2 weeks so no hospital visits

Daily meds as follows
Alloprinol 300mg mornings
Omeprazole 20mg mornings
Aciclovir 400mg twice a day for 28 days

Additionally and separate from MM I take tablets for high blood pressure and the anticoagulant Rivaroxaban.

I know its early days but I seem to be coping however only managed four hours sleep last night and have not needed my usual afternoon nap

[Author]

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