[susieParticipant]

Hi Michael

Thank you so much for your reply.

I’ve had MM since 2004, you’d think after all this time I wouldn’t get in a state when starting a new treatment. I’ve been able to avoid IV drugs so far, i think one gets more intensive side affects following IV treatment. I’ve been told this will be my last treatment!!!. This I find rather surprising considering all the drugs available for our disease.

With Best Wishes
susie

[susieParticipant]

Hi Doc Mike,
Thank you for that info. It’s answered some questions I had.
You have a good Christmas too.
Best Wishes

[susieParticipant]

Sorry this has come up on the wrong group. I don’t post very often. If I can I’ll move it over

[susieParticipant]

Hi Sue
I am just about to start cycle 25 of RID and I have to say it hasn’t been too bad. The days I take the ixazomib I sometimes feel a bit yuk but nothing too bad.
If it wasn’t for this virus I’d be living a pretty normal life. It’s kept my myeloma under control and long may that continue.
I wish you the best, hope this treatment does well for you.
susie

[susieParticipant]

Hi Jan
Nice to hear from you. There doesn’t seem to be much activity on here these days.

Yes after a month off treatment my neutrophils recovered to normal levels and they restarted me on 15mgs lenalidomide which I am still on. There was a mix up over drug delivery last month which has meant my paraproteins have risen to7 from 4 I’m hoping they will come back down in time. I’ll be starting my 21st cycle soon. Gosh where time goes.

You sound as though things are progressing well with you, and I hope it continues for you.

All the best & take care

susie

[susieParticipant]

Hi Jan
Nice to hear from you. There doesn’t seem to be much activity on here these days.

Yes after a month off treatment my neutrophils recovered to normal levels and they restarted me on 15mgs lenalidomide which I am still on. There was a mix up over drug delivery last month which has meant my paraproteins have risen to7 from 4 I’m hoping they will come back down in time. I’ll be starting my 21st cycle soon. Gosh where time goes.

You sound as though things are progressing well with you, and I hope it continues for you.

All the best & take care

susie

[susieParticipant]

Hi Been
I was 68 when I started this MM journey and on the myeloma X1 trial. An SCT was never mentioned by my consultant at the time so I brought the subject up when he asked if I wished to go on maintenance arm of the trial. Although after much research I had decided not to do SCT if it was offered, he did say people don’t realise the mortality that can be involved. He certainly gave the impression that he didn’t really have a lot of confidence in transplants. So I didn’t go on maintenance or have an SET and I had nearly 3 years of drug free remission.
Hope that helps a bit Bren
Best Wishes
susie

[susieParticipant]

Hi Marty
Welcome to the forum tho I’m sorry you’ve found it necessary to join us. You will find a lot of support here.
It would be very interesting to learn how MM is dealt with in Australia so I hope you can keep up the info on your journey.
I was diagnosed in 2014 and am on my 3rd line treatment at present (ird) until it stops working. It’s not too bad and all oral, so it’s only a hospital appointment every 4 weeks.
I wish you the very best in your journey. Keep in mind it’s a marathon, not a sprint. I’m sure it will be a confidence boost having your sister in law around.
Best Wishes
susie

[susieParticipant]

Hi Kay

I was never offered an sct at the age of 69yrs and when I asked my consultant at the time, his reply was ” people don’t realise the mortality involved “. It’s never been mentioned since. That was 5 yrs ago since when I’ve had 4 different consultants.!!!

Best wishes

susie

[susieParticipant]

Thanks for your replies.

Sue HI. The hospital I go to is not big. Their main cancer unit is at the main trust hospital just under 20 miles away. I have heard good things about that unit,so I don’t really understand why I’m feeling the way I do. As said perhaps I expect too much. Too many patients,not enough staff. They don’t have Macmillan nurses but I think they do at the main trust hospital.

Hi David

I did go to a support group started at the main hospital, but I’m afraid I found them rather clicky. There was no one from my hospital so they all knew each other. I’m afraid i felt very out of it. I was diagnosed some 5 yrs ago and I’ve not had a chanceto just chat to anothe myeloma patient.

Gosh enough of my moaning. I do sound a grump don’t I.

Best wishes to you both

susie

[susieParticipant]

Hi Jan

Thanks for your reply which was most informative.

Yes this combo has brought my Parapeoteins down from 40’s to 4. The Dex was reduced some time ago due to really bad cramps, so currant dose is 10mgs but I still get the cramps in my hands. My consultant told me the steroids are not that important which I found odd. I’ve had a fair few side effects from ixazomib which was reduced to 3mgs. Revlimid is still at 25mgs.

I can’t seem to get my head round staying on these drugs for what may turn out to be a very long time, at top doses. I would have thought once pp’s are down the doses would have been reduced, then if pp’s start to go up, doses would be increased again. As it is done currently there is no way to increase drugs to bring pp’s down again.

I hope that makes sense. I know myeloma is very individual. Do you ever question what medical bods say/order ? I’m terrible I need to know the ins and outs of it all.😊

Very Best Wishes Jan.

susie

[susieParticipant]

Hi Jan

Sorry to interrupt this chat but I noticed you are on rid and at the end of cycle 8. I too am on this combo and have just finished cycle 6. I know the patient stays on this till it stops working but do you know if one stays on all the drugs or is it just Revlimid you stay on.? At my last consult I got the impression he may reduce or stop some of the drugs.

Hope you’re keeping well

Best wishes

susie

[susieParticipant]

My dear Helen
How sorry I am to read your news that this cruel disease appears to be winning but you say you look and feel well. So concentrate on that, coz none of us really know what the future holds. You’ve fought MM so hard and your posts have helped many of us. Enjoy your Rome trip with your family.
I shall be thinking of you.
Sending love and hugs
susie xx

[susieParticipant]

Hi Jan

Thank you for your input. You say you’re on your 10 cycle, how many cycles was it before they reduced dosage ? Did they reduce only to correct side effects.?
It has reduced my paraproteins from mid 40 s to 17 a month ago. I seem to get no ill effects from Revlimid. I was on the myeloma X1 trial and the Revlimid worked really well taking Pop’s to undetectable from 64.
I’m feeling ok now and will take the ixazomib (3rd week) on Wednesday.
I wish you all the very best in your treatment Jan.

susie

[susieParticipant]

Hi J

Thank you so much for replying.

I have to confess the week after the one I posted about I didn’t take the ixazomib. I was only just beginning to feel bit better and couldn’t risk feeling so bad again. I’m sure the consultant won’t be too pleased but it’s my body and there is quality of life.

I will take the 3rd one of the cycle and see if the same happens. I hope not. It’s 2 weeks till my next clinic appt. I didn’t contact the unit because I had no temperature so it wasn’t infection. They would have wanted to see me and I’m fearful of getting an infection in hospital.

I found it interesting J that you had no problems with your next dose of ixazomib.

Again thanks for your reply and I wish you all the best in your treatment.

susie

[Author]

Posts