Hiya Jill.
I’ve been on Pomalidomide for 17 cycles now and find the side effects very mild. I know everyone reacts differently but I’ve been through several different treatments and Pomalidomide is the easiest to live with I’ve had.
I wouldn’t take anti sickness tablets as a matter of course only take them if needed. Cotrimoxazole is is an antibiotic as well as penicillin so I’m assuming your mother must have an infection or two..
Every try day is a gift.
Andy xx
Hi Jan.
Paraprotein levels are only a part of the picture as far as Myeloma is concerned. As your husband is smouldering at PPs of 26 there’s no need for treatment. Some people live with higher PP levels with no problems and some people have very low PPs and have lots of problems. As you will come across Myeloma is a very individual disease.
The medics assess us using the CRAB system C = calcium(increased level) R = renal(kidney failure) A = anaemia and B = bone(lesions) this has been updated recently to include imaging too eg. MRI, X-ray and CT scans.
As long as his regular blood tests come back normal and he isn’t feeling any new pains your husband could smoulder for a long time.
Every day is a gift.
Andy xx
Hi Helen.
Well the Professor gave his considered opinion and SCT has been ruled out again with the same reasons as before due to the hammering my bone marrow has had due to the constant chemo. So even the my blood tests have been good they must lack in certain areas. I’ll have to get the full report from my consultant next time I see her.
I’m glad you seem to be getting along with Pomalidomide now as you say anything that extends life and gives you more time is worth taking. Hopefully a SCT Allo or Auto will be available to you. As to trials they looked like my only option when an Allo SCT was ruled out for me and the distances needed to travel for some was scary but as you say it’s something that will have to be done if necessary.
We are planning on going to the info day, 9th of May I think it is, Steph keeps on at me to book it and I keep forgetting! It’ll be good to meet up again and have a catch up and you maybe able to sell us some time in your holiday home. We’ve booked a few nights in the lakes again for the end of April not as flash as Tuscany though. Oh and my cooking amounts to chopping stuff up, I think ingredients is the technical term, and putting them in the slow cooker and forgetting about it for several hours. Right time to try for some sleep.
Every day is a gift.
Love Andy xxx
Hi Vicki.
Just been catching up on the forum as it’s my DEX night! Though recently I’ve been managing to sleep on my Tuesday Dex nights not tonight though.
I find it strange your consultant seems to work in isolation. My consultant regularly has meetings, probably conference calls, to discuss her patients and treatment options with other local consultants and involved clinicians. When she alters my treatment she explains why and what to expect and this is usually with the agreement with a Professor at the Freeman Hospital in Newcastle.
Blood tests can tell a lot even if PPs are not detectable. All my results were down whilst on Revlimid they were all hammered and I was neutropenic for most of the 22 cycles I was on it.
At our last support group meeting we were told by the Professor that BMBs aren’t an effective tool to gauge myeloma activity due to irregular way myeloma is spread through your bone marrow! PPs aren’t the be all and end all of tests either. That’s why it’s important to take the blood test results as a whole and work from there. Ironically falling PPs can be a bad sign too in that the bone marrow is failing and can no longer produce PPs. Who knew that? Not me till a few months ago.
I still can’t understand why Colin went on to Bendamustine without being tried on Pomalidomide first. I was told that Bendamustine was an option for me but Pomalidomide came alone just in time. Still if Bendamustine does the trick Colin has Pom in the cupboard if needed later. Hopefully a long time later.
SCT has been ruled out again for me. Same reason given as last time my poor old battered bone marrow wouldn’t be up to the job of producing the required stem cells. I’ll have to wait till I see my consultant to get the full story.
Ok time for me to try for some sleep or is it movie time?
Every day is a gift.
Andy xxx
Hi Susie.
Sorry I do know much about vironostat other than it’s in a new class of drugs that are being investigated and undergoing several trials.
The trouble with myeloma is it never leaves you and unless you get the top rated remission ie no detectable myeloma you will probably not return to pre myeloma fitness. The drugs we take damage our good bone marrow too sometimes permanently, usually after long term chemo, and our immunitity is lowered. What are your readings like now?
Hi Jeff.
I too had trouble with T11 and T12. I underwent surgery on them I had kyphoplasty. It’s a day case operation though us MMers get to stay in over night due to our low immunitity and infection risks. From reading your post Jeff I think the spinal cord compression is the most worrisome. That’s only my opinion by the way and that’s because my spinal surgeon mentions it every time I see him and tells me how important it’s to get prompt treatment. I’ve got problems with my spine from top to bottom and damage to all my vertebrae. Depending on the time of day I get measured I’ve lost up 5 inches in height.
Anyway Jeff I hope your consultation went well.
Hi Dorothy.
You are certainly being but through the mill. I hope you make a swift recovery from your operation and the you can get on with the next leg of your journey your SCT. Take it easy and don’t rush things and be prepared for little set backs.
Every day is a gift.
Andy x
Hi Val.
When I was diagnosed I was told six cycles of chemo, CDT, then SCT. Well I’m still on chemo and SCT has just been ruled out again! Oh I was diagnosed October 2011 that’s three and a half years of chemo.
Everyone’s journey with this disease is different never count on anything going to plan.
As far as I know it’s up to you where your treated and your GP should help you there though the final say will be down to the consultant/hospital you wish to be treated by. Good luck.
Every day is a gift.
Andy xx
Hi Helen.
I’m having a Dex morning! A new one for me. So I’m nosing around on here to see how things are progressing.
So now the wedding is out the way the move is back on. The grass doesn’t have chance to grow under your feet! Have you somewhere in mind to move to? Have you already mentioned it and my chemobrain has forgotten it? lol
A holiday home too. That sounds a great idea might even suggest something like that to Steph since we’re creatures of habit going to regular places. Have you somewhere in mind? Though I’m determined to keep our Greece trips going as long as medically possible. Are you planning on buying a holiday cottage outright or a share in one? Hope I’m not being too nosey 😉
Ok back to things medical. I’ve still not heard from the Professor I guess I’m not on his radar yet. Though my consultant says she’s pestering him. I see what she says when I se her in April.
London is a long way to travel for a trial! I thought Nottingham was going to be a trek when the Prof. mentioned trials to me in 2012. How were your last bloods?
Wowzer it’s 9am already guess I’d better get moving drugs to take, breakfast to eat and believe it or not dinner to prepare. Thankfully I’ve got plenty of anti sickness drugs lol.
Hope everything is ok.
Every day is a gift.
Love Andy xxx
Hi Maureen.
The rule I was told at the beginning of my myeloma journey was that before a SCT you needed at least a 50% reduction in PPs levels before it would be considered. I suppose that applies to the other ways myeloma is measured too.
There is no “normal range” though the closer to zero the better as been stated in this tread already good results can be achieved whatever the starting point.
Has Ian been checked to see the condition of his bone marrow? Sometimes getting the 2 million cells can be problematic especially after several courses of chemo.
I don’t envy Ian having high dose Cyclophosamide it is a horrible drug, well it was for me, though he’ll only have it for a short time I had it for 30 months! though not at the dose Ian will be getting.
I hope every thing goes as planned and Ian can spend the summer recovering and relaxing looking forward to a long period drug free.
Every day is a gift.
Andy xx
Hi Kells.
Just come across your post and see you’ve not had a reply yet.
In my eyes saving money on premiums by not disclosing MGUS is pointless because if you ever have to make any claim your medical history will be examined and your diagnosis of MGUS discovered and your insurance will probably be null and void so all your reduced premiums will of been wasted.
Travel insurance will be the same always disclose.
Every day is a gift.
Andy.
Hi Roo.
I’ve been on thalidomide and and thalidomide based chemo since October 2011 with varying side effects. Mainly tiredness. Cyclophosamide is the one that caused me most problems with nausea, lack of concentration, effecting my appetite etc. I’ve been on full strength treatment since diagnosis so have been open to all the side effects.
Your dad has legitimate worries about side effects though given his age he will be given reduced doses of everything and if anything starts to cause problems it will be stopped or reduced further. Quality of life is a big consideration in the treatment of myeloma due to its incurable nature. There’s not point being drugged up if the drugs cause more problems than the disease. Younger, fitter patients get everything thrown at them but even those have to have treatment scaled back at times. I wouldn’t recommend your dad playing around with his treatment plan himself ie. stopping Dex (the devil drug) without consulting the medics first as that can cause problems sometimes.
At the end of the day it’s your dad’s life and only he can say if he’ll take the treatments or not the docs will totally understand his dilemma and should be able to reassure him that the treatment should be ok but if it causes more problems than its worth they will reduce dosages or stop some drugs altogether. Quality of life will be the main aim.
Hope this helps a bit.
Every day is a gift.
Andy
Hi.
Be aware when your dad has his first treatment it still could knock him back a bit even at a low dose. It takes the body time to get use to the drugs. Keep a diary from day one detailing what he took and how it made him feel. It’ll help the medics and will help your dad as he’ll know what to expect through his treatment cycles.
Keep his fluid intake up 2-3 litres per day and monitor his temperature regularly anything over 37.4 for more than two hours needs to be reported to your dads medics ASAP.
Don’t be afraid to ask ANY questions on here or of your dads medical team no matter how daft or trivial you may think it is. We are here to help if possible.
Every day is a gift.
Andy xx
Hi Vicki and Colin.
I hope Colin is coping better with the Bendamustine now and is getting the results we all hope for.
I don’t know how my PPs are at the moment. I’m a bit more laid back about my blood tests nowadays. So I only find out what they are when I see my consultant. Every three months! Well every twelfth week really 😉 I’m happy to leave it to the medics if I don’t hear from them my monthly tests must be ok. I’ve not had any more news about an auto SCT though my consultant came to see when I was in hospital and she said she was going to get in touch with the transplant coordinator.
Every day is a gift.
Andy xx
Hi John.
There are a few of us around who haven’t had a SCT for one reason or another. Drugs can get you into remission and you can get a decent drug free period that way too.
I haven’t had a SCT but that’s due to my myeloma being difficult to treat. Don’t give up on a SCT just yet once they hopefully sort your cough out you’ll get your SCT.
Every day is a gift.
Andy.
Hi Susie.
At the moment there’s nothing definite about maintenance therapy they are still running trials to see if there’s an advantage and the optimum doses. I guess it comes down to the old chestnut about quality of life. If you go along with the maintenance route and you find it impacting upon your well being you can always stop it.
I have no personal experience of maintenance therapy because I’ve been on full blown treatment since 2011!
Every day is a gift.
Andy xx
Hi Ron.
If I have ANY problems I go straight to the haematology day unit or ring them for advice. I wouldn’t go to my GP or A&E. I’ve done this for over three years now and it’s what I was told to do by my consultant. We can’t afford to hang around waiting for treatment it can be fatal.
Every day is a gift.
Andy.
