[andygParticipant]

Hi Richard.

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

Every day is a gift.

Andy x

[andygParticipant]

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 up having twenty two cycles eventually.

Only Revlamid and Pomalidomide have ever worked for me.

Every day is a gift.

Andy xx

[andygParticipant]

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 very long remissions others don’t unfortunately you both have to try and get use to a new way of living where myeloma is a big part of your life.

Every day is a gift.

Andy xx

[andygParticipant]

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 PPs and struggle with the disease.

I’m assuming it’s the BMBs that will be at 3 & 6 months with regular blood tests in between.

My advice would be to monitor your husband and any changes in mood, health, and mobility get out the the thermometer ASAP to check he’s ok. My wife is always checking to see if it’s ok if I’m a bit “off’ .

Sorry it’s not much help but from my experience a thermometer and a vigilant partner can make a big difference in treating the effects of multiple myeloma because we all tend to think when things go wrong ” it’s only a cold” etc etc but in reality we can’t afford to ignore any symptoms at all.

 

Every day is a gift

Andy xx

PS. Hope you had a great Christmas and the New Year brings you everything you hope for Suzi.

You too Ellen and everyone else at MyelomaUK xx

[andygParticipant]

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 to eat like a pregnant woman ie no live foods, shellfish, live yogurts, raw eggs etc etc probiotics were on that list. I’d discuss it with your specialist nurse before going ahead.

Every day is a gift.

Andy xx

[andygParticipant]

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 way I look at SCTs is they at worst buy you time for new drugs to come available though I know the recovery from them can be harsh and some only get a short time in remission. At best SCTs can give years of drug free life and lots of new drugs ready when you relapse. Unfortunately there’s no crystal ball to see how you’ll fare after a SCT so it’s a difficult choice to make for some.

I hope they come up with a suitable plan for you on Thursday that your happy with.

Every day is a gift.

Andy xx

[andygParticipant]

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 instead. A teaspoon of salt in a warm glass of water held in the mouth for two minutes 4 times a day. I didn’t have trouble with a numb tongue though but I guess the cause will be the same.

My sense of taste was hammered everything tasted metallic and food and drink became a chore I had to force myself to eat to maintain my weight. Spicy food was the only thing I could really taste and a pint of beer could last me all night! My sense of smell went as well and I also found my concentration suffered to. You have to remember  I had over two years of RCD so I suffered most side effects over that time the norm is 6-8 cycles pre SCT though of course there is execeptions.

When you get to SCT and they clean your bone marrow out with high dose chemo the mouth problem is amplified.

Other side effects due to Dex are the thining of your skin and muscle wastage it can also weaken bones and in worse cases cause diabetes! I’ve been told to hold back on sweet stuff around Dex time and have a high protein diet to help prevent muscle wastage and have some exercise if possible.

Oh aren’t I full of good cheer.

Hope I haven’t spoilt your day.

Every day is a gift.

Andy xx

• This reply was modified 9 years, 11 months ago by  andyg.

[andygParticipant]

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 say if a SCT was available to me. If that situation ever present its self then I think I will be in for some headaches!

Re wedding invites Steph and I had the same dilemma when we got married and decided it was our day and invited only a few children of close relatives. If others were put out be that that was their problem.

The holiday diary is still looking bare guess that needs sorting.

Had an appointment with my spinal surgeon and he said there’s no major change shown on my latest MRI so I don’t see him for another six months. Off to see my dental consultant Tuesday to see how my ONJ is coming along. It’s all go!

Hi Mavis.

A motability scooter wow I got my motability car at the end of August so we are both mobile. When I’m out and about and I see people on their scooters I wonder if I will need one in the future. I don’t know who’d be in more danger me or pedestrians.

Hope your remission continues for a long time to come.

Hi Maureen.

I don’t know how low Ian’s FLC need to go till he’s classed as being in remission. That is my next mission to find out. When he gets there they can harvest his stem cells and then you’ll be in a position to decide if and when you go for SCT.

I’m with you on the retirement situation. I can’t find enough time to do the little I do now so how I managed to fit work is beyond me! lol

Every day is a gift.

Get out and enjoy them.

Love Andy xx

[andygParticipant]

It’s happened again my posts been cut of in it’s prime!

Now then how did it go.

Do you have stem cells stored for a second SCT? I think if it was me I’d delay the SCT whilst I was doing and feeling ok especially in light of the experience you had with the first SCT though I guess no two SCTs are the same. Quality of life for me is the most important aspect of treatment and if you’re feeling well why risk it. That’s my thought anyway.

Hopefully Pomalidomide will get you to remission quickly and then you will be better placed to make a decision on the second SCT. I’m on my twelfth cycle and my PPs are holding at the mid sevens.

You’ve got a busy few months coming up Christmas, wedding, moving and not forgetting Amsterdam! Time will fly by. We’ve not got anything  in our holiday diary. We did have a trip to the lakes booked but that’s been cancelled so will need to be rearranged and we’ll probably be going to Greece again in May so that needs to be booked. Hopefully we’ll fit in a few days away here and there before then.

Hope every thing goes brilliantly at your next blood tests.

Every day is a gift.

Love Andy xx

ps. This better not get cut short because I’m sleepy now lol.

 

[andygParticipant]

Hi Helen.

I just reread my last post and it seems to of been cut short.

I’m tired a lot of the time but I put that down to my sleepless nights due to the Dex effects. It’s a worry I have wondering how long my bone marrow can last with all the battering it’s taken with over three years of drugs. Though Pomalidomide seems to be a bit more gentle on my system as all my blood tests have come back ok or I should say bloody brilliantly for me

[andygParticipant]

Hi Vicki & Colin.

it seems a lot of people are having second SCT’s or getting ready for a second SCT at the moment. I know what you mean about it being a dilemma now with talk of a possible SCT for me I’m not even sure I would go for it. My reason being that it takes so long to get over a SCT that I wouldn’t want to spoil the quality of life I have at the moment. Anyway it’s all hypothetical for me at the moment.

I’ve just started my 12 th cycle of Pomalidomide. I’m getting in the routine of pill popping after all I’ve been doing it for over three years! The main trouble I have at the moment is my once a week every week dose of Dexamethasone. But otherwise I’m fine and enjoying myself. How many cycles is Colin down to have.

Hi Dawn.

I’m being treated at North Tees Hospital in Stockton on Teesside.

Every day is a gift.

Andy xxx

 

 

 

[andygParticipant]

Hi James.

Your right I got it wrong apparently different patients show their myeloma in different readings. Some can only have their myeloma measured by bone marrow biopsy. I do know they don’t take any reading in isolation. Some have high paraprotein levels and aren’t treated immediately others have low paraprotein levels and get treated straight away due the results of other indicators in the blood.

Sorry for the confusion but I’ve learnt something new.

Every day is a gift.

Andy

• This reply was modified 9 years, 12 months ago by  andyg.

[andygParticipant]

Hi Susie.

No advice really. I took my cyclophosomide on Sundays so I could be off colour Mon, Tue, Wed, and sometimes Thursday so I could enjoy the weekend when Steph was off. That only happened weeks 2 & 3 of each cycle due to the Dex effect week one. I took my Cyclo with lots of water but even though I was on Cyclophosamide over two years I never found an answer to the nausea other than anti sickness pills. I stuck it out because it worked.  I started my anti sickness pills before I took the Cyclophosamide.

Sorry I can’t help.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Jean.

They seem very strict criteria for Mikes PPs. Though I think I achieved it and I’ve just started my 12th cycle I guess it depends on the criteria by which you qualify for Pomalidomide. Is Mike on a trial?

My wife still works and is sneezing all the time but remarkably I’m doing ok.

I hope everything goes well.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi Helen.

It’s my steroid night as you may of found it’s taken weekly every week with Pomalidomide or at least I am. Pomalidomide seems to have a good response track record so hopefully it’ll get you to SCT. You didn’t have a great time after your last SCT but I guess time is what we want. It was two years ago the Prof. was looking at an Allo for me but as usual my blood didn’t play ball and a suitable match couldn’t be found. There’s no end to my luck lol.

We’ve not had a serious talk about what happens after Pomalidomide gives up but both Bendomustine and Melphalan have been mentioned when Revilimid was on it’s last legs  but we’ll worry about that when the time comes. I too look, as well as I can

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