[tmcintyreParticipant]

I can’t see that anything about cbd oil on here but if you can get onto the UK Myeloma Support Group on Facebook they have discussed it briefly.

[tmcintyreParticipant]

Thanks,

We’ll see how he gets on with his 3 cycles of ixazomib. His consultant didn’t say he was on a trial although as you say, that drug is on trial, he just said he’d secured funding for it.  We’ll know more as time goes on.

I hope your dad keeps well,

Teresa

 

• This reply was modified 7 years, 8 months ago by  tmcintyre.

[tmcintyreParticipant]

Hi,

My husband was diagnosed in December and has tried two different combinations of drugs which have not reduced the cells in his bone marrow. He is just finishing his first cycle of ixazomid which he is taking with Revlimid and Dexamethasone. He will have 3 cycles and has been told he is still aiming for SCT but has been warned he will be on maintenance chemo afterwards. He has never asked what stage his Myeloma is or how long he has.

best wishes

Teresa

[tmcintyreParticipant]

Hi,

Can you tell us which drug it is?

best wishes

Teresa

 

 

[tmcintyreParticipant]

Hi Paula,

Velcade seems to be the popular choice for induction at the moment, no doubt something new will come along in the future.  I suppose we have to accept that not everybody will get good results from it but I kind of wish the consultant hadn’t specified a time frame for everything because its really upsetting when it doesn’t pan out that way. Also SCT is the aim whereas I have read some people’s thoughts that it might not always be the best option.  Who knows, we have to trust the consultant. My husband just wants this year to be over.

I think we’ve been in touch on the FB forum too.

Teresa

 

[tmcintyreParticipant]

My husband doesn’t like to have too much information and the consultant and nurses understand that. When first diagnosed he was told he’d have 4-6 cycles of induction treatment followed by SCT. Things have not gone to plan and he is now on his 8th cycle , his third combination of drugs, and he takes each cycle as it comes. He knows the aim is to get to SCT and he knows he will be on maintenance drugs afterwards and in the meantime he is trying to live as normally as possible

He has a contact list of specialist nurses if he needs to talk to someone.

• This reply was modified 7 years, 9 months ago by  tmcintyre.

[tmcintyreParticipant]

Hi,

In our experience once the diagnosis has been made things happened very quickly.  My husband sees his consultant every 4 weeks to talk about his current treatment, with bloods taken on the same day. If he has any problems eg, pain in hands and feet, the dosage is adjusted.

When was your diagnosis and what treatment are you on?

best wishes

Teresa

[tmcintyreParticipant]

Dear Ann, I hope your husband continues to do well.

Hi Mike – its shocking that free availability of this drug is not universal.  Its a shame that you have to battle to get access to it.  Let us know how you get on,

best wishes

Teresa

[tmcintyreParticipant]

Dear Ann,

Thank you very much for your advice.  Dave was up very late this morning so I was able to give him the Linlaro after reading Adrian’s message, before he got out of bed. By the time he got up and showered he didn’t have to wait long before he could eat and take the Dex. He hasn’t been sick to day but if he is we will do the same as your Dave. i’m sure he’ll settle into the routine quickly, he has done before.

How many more cycles will your Dave have?

regards

Teresa

[tmcintyreParticipant]

Hi Adrian

We still don’t have the results of the bone marrow biopsy, doctor explained it had to be sent away and a dye needed to be added etc. We go back in two weeks to talk about how Dave is getting on with the new meds. I think Dave has gas and air, I’m glad that it made it better for you. He said he’s not prepared to have any more biopsys (he’s had three) but I’m sure he will when the time comes.

Thanks for the tip about not eating straight away, I’m sure that will help. The last thing we want is Dave getting any sickness now as he hasn’t suffered with any of that yet and I can tell he’s a bit down about the delay in SCT.

Are you having a break in treatment now? Keep me up to date,

Teresa

[tmcintyreParticipant]

Hi Adrian and Ann

My husband is starting the new combination of drugs today. In your experience is there a best time of day to take the Ninlaro? I know the Dex is best in the morning and Revlimid at night

Teresa

[tmcintyreParticipant]

Hi Adrian,

I think Dr J is very keen to make sure his patients get the best chance at remission so although his treatment plans seems to be longer than other hospitals I have faith that the outcome will last longer.

Let us know when you get your bone marrow results. Dave gets the second part of the results on Tuesday

Teresa

[tmcintyreParticipant]

Hi Adrian

Good to hear from you! Yes we see Dr J. How have the last three months been for you? When were you diagnosed and what’s the next step for you?

Teresa

[tmcintyreParticipant]

Hi,

It seems so tough trying to get the treatment you need, good to have Myeloma UK on your side.

I don’t know how or why the consultant has gone down this route. He didn’t say it would be a trial, just that he was fortunate to obtain funding, perhaps because its only for 3 months or because my husband’s brother died from MM? My husband had 5 cycles of Velcade/Dex, having dropped Thalidomide because of the beginnings of Neuropathy. Then 2 cycles of Cyclophosphamide/Dex. His bloods are completely clear but his bone marrow is still showing plasma cells. Presuming he does have SCT, the consultant has said he will stay on Rev as maintenance.

Please let us know how you get on,

Teresa

[tmcintyreParticipant]

Hi Michael,

How long have you been taking Rev/Dex?   Have you had SCT and now relapsed?  My husband is still on initial treatment, his SCT has been delayed twice,

regards

Teresa

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