Hi, your post is interesting. I am the opposite to your husband. I was on myeloma XI trial, had a SCT two years ago, after long discussions with consultant and trials drug nurse I opted for no maintenance. Have had one infection over those two years, pps never went much below 2.0 and are slowly rising currently at 4.9. No talk of any further…[Read more]

Evening, had my SCT exactly 2 years ago. Was/am on the myeloma XI trial. See my consultant every 3 months, not on any drugs have penidronate infusion every three months, it is being changed to zometa this month. My Pps never went much below 2, last reading three months ago was 4.9. Other readings must be okay because consultant has not recommended…[Read more]

Hi Susie.

It’s important you let your dentist know your on Zometa the next time you visit. Tooth extractions would only be done as a last resort and hopefully after a minimum of three month break from Zometa. The problem occurs due to exposed bone and has to be avoided as it can lead to osteonacrosis of the jaw. Which is another little problem I…[Read more]

Hi Richard.

Just caught up with your post and agree with everything you say.

Every day is a gift.

Andy x

Hi Jean.

Infections can effect the results of blood tests and to only give Pomalidomide two cycles and expect a fifty percent reduction seems a bit harsh. Having said that I only had two cycles of Velcade for similar reasons! When I was on Revilimid my PPs didn’t show a reduction for four cycles till they added Cyclophosamide to the mix. I ended…[Read more]

Hi Valerie.

There’s not much I can add to what Richard has said. Everything you describe is pretty much typical of a myeloma journey. Dexamethasone is a demon but essential drug. I know as I’ve been on it for over three years now and tonight is my DEX sleepless night. As to how long will his agony last I’m afraid no one can answer that some get…[Read more]

Hi Suzi.

As Ellen says non-secretory myeloma is rare. I’ve been on this forum since 2011, I think, and can only recall one other case.

My knowledge is even though paraprotein monitoring is important the whole blood analysis is important and a good indication of myeloma activities.

Some can live with high PPs and smoulder whilst others have low…[Read more]

Well, perhaps not a good idea to go swimming in a pool. We were on holiday, I went swimming, had a sauna etc and lo and behold two or three days later, wallop. Probably the worst infection I have ever had, laid me low for ten days! Couldn’t put the infection down to anything but the swimming.
But hey we are all different.
Regards
Tony F

I really do not think that this discussion forum is the right place to bring up such a subject.

Hi Susie.

Since your on Revilimid it could be a side effect of the drug. I used to get intestinal cramps quite regularly at the end of cycles when I was on Revlimid. I also had cramps in my legs and hands.

I wouldn’t advise using a probiotic though it does really depends on your neutrophil level. When I was diagnosed the advice I was given was…[Read more]

Hi Linda

I was diagnosed in October 2011. Due to my myeloma not responding to the normal early treatments I’ve never got to SCT. I’ve been through nearly all of the drugs in the myeloma medicine cabinet and I’m currently on Pomalidomide (Imnovid) . Only Revilimid (Lenalidomide) and Pomalidomide have had any significant effect on my myeloma.

The…[Read more]

Evening Chrissie, so your pp’s are at 23 and you are not on any treatment. Can I ask, have you been on treatment, if so have you had a SCT?
I was diagnosed 3 years ago, put on myeloma XI trial, had a SCT, pps were down to 2. That was almost 2 years ago. No treatment since the SCT. Pps now at 4.9. Specialist doesn’t appear concerned, still no…[Read more]

Same thing happened to me, very annoying.

Hi Susie.

I had trouble with my mouth it’s due to the chemo. The chemo works by killing fast growing cells and your mouth unfortunately is full of them. Good oral hygiene is essential. I used Nystatin and Difflan mouthwash though I was told to stop the mouthwash by my dental consultant due to it’s alcohol content and use warm water and salt…[Read more]

Hi Susie.

I had trouble with my mouth it’s due to the chemo. The chemo works by killing fast growing cells and your mouth unfortunately is full of them. Good oral hygiene is essential. I used Nystatin and Difflan mouthwash though I was told to stop the mouthwash by my dental consultant due to it’s alcohol content and use warm water and salt…[Read more]

Evening Helen.

It’s my Dex night and my forum catch up.

Glad to read you’ve had a good response to Pomalidomide. Hopefully the Cancer Drug Fund won’t remove it from its list of available drugs.

You still have some control in your course of treatment Helen which is good. I don’t know what I’d do even though I have thought a lot about what I’d…[Read more]

Oh dear Mike, the most likely explanation is my misunderstanding and misinterpretation of what was actually said to me…I still feel like a rabbit in the headlights and so dis-empowered when I go in for a monitoring appt so probably mis heard.

Thanks for your response, it is much appreciated.

Kind regards

Karen

“so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

I think we should all live our lives to the full and enjoy every day.

I try to ignore the w…[Read more]

“so who’s to say you won’t grow old and penniless because you spent all your pension money having holidays and enjoying life thinking you wouldn’t need it for later?”

This is very true Rebecca, thank you for a smile moment on a damp and dreary morning.

I think we should all live our lives to the full and enjoy every day. There are medical advan…[Read more]