[andygParticipant]

Hi Dusk.

I was on RCD for 22 cycles and I was always neutropenic. My neutrophils dropped to  0.5 a couple of times. I was told to give the Cyclophosphamide a miss for a week that’s all.

As to living with low neutrophils I made family and friends aware how dangerous it was for me if they turned up with infections. I steered clear of busy pubs or went in at quieter times, something I still do now, and keep away from young children in case they had chicken pox! I’ve never had chicken pox so it’s very dangerous for me if I get infected with it. I was told by my consultant if I came into contact with someone with chicken pox or if I came into contact with someone who had been in contact with someone with chicken pox I had to go to the day unit ASAP and get an injection as a precaution. As happened once. Food wise I was told to eat as a pregnant woman was advised to eat. Which wasn’t a problem really because I was off my food anyway. Otherwise I lived as normally as possible flew to Greece etc. With Myeloma you can’t afford to put things off till your better.

Every day is a gift.

Andy

[andygParticipant]

Hi Jo.

Sorry Pomalidomide is causing you problems. The side effects you describe sound very much like the ones I suffered whilst I was on Revlimid(Lenalidomide). My neutrophils were rarely over 0.8 and sometimes dropped as low as 0.5! Hopefully your light chains will stabilise and you can continue with Pomalidomide.

My bloods have all recovered from the battering they got when I was on RCD and are stable I just hope they stay that way for some time to come because like you I know the options are starting to run out. I notice you haven’t tried Thalidomide maybe that could be an option.

Has there been any mention of a second SCT?

I did read or heard somewhere a theory that Myeloma is made up of several different cancers and when you are treated it wipes out one type and allows another type to flourish so that remissions could be short. It was only a theory but it sort of made sense to me.

Oh we go to Greece a week on Sunday and cycle 23 hopefully starts when we get back.

 

Every day is a gift.

 

Andy xx

[andygParticipant]

Hi Cartdaw.

I remember my time on CDT and it wasn’t pleasant at all. I was in and out of hospital all the time. I hope your harvest goes well and you get the millions of the beauties you need quickly. Then go on to a very successful SCT.

Every day is a gift.

Andy x

[andygParticipant]

Hi Jo.

Welcome to the wonderful world of posting. It can be daunting at first but I believe everyone has insights and advice that will help others. Questions posed maybe the same as others, who are just readers, who are a bit reluctant to put fingers to keyboard so every little helps as a big supermarket are keen to tell us.

What are your mixed results Jo? If I maybe so bold to ask? Are they side effect problems or are blood results not so good?

My side effects are mainly cramps at the end of cycles but not every cycle fortunately. As for thinning hair I wouldn’t notice 👴🏻😂

Every day is a gift.

Andy xx

[andygParticipant]

Hi Carol.

I’ve just started my 22nd cycle today and still no major problems with Pomalidomide side effects. I had a bout of cramps yesterday in the usual places! My lower left leg and my fingers. I can laugh at my finger cramps as they’re not too painful just awkward but my leg cramps are another matter! Fortunately I don’t get them every cycle.

It’s strange how your medical team react to you being on Pomalidomide and its cost my team are the opposite every time the price comes up, rarely, they say I’m worth every penny of the cost 😇. I’m the only one in our unit getting Pom at the moment the others it didn’t work for or the side effects were too harsh.

Off to Greece for a few drinks and a bit of relaxing in the sun a week before for I hopefully start cycle 23 I hope I stay a couple of cycles behind you for a long time to come.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Noel.

That all sounds very good to me. Fingers crossed it continues that way.

Every day is a gift.

Andy

[andygParticipant]

Hi Simon.

Unfortunately that’s the nature of the beast treatment knocks it down but it always comes back. The time scale varies vastly from one patient to another. Some only get a few months of remission others get years some never achieve remission. They won’t start treating you until the myeloma starts causing you problems. ie bone damage, kidney problems etc. which hopefully won’t be for a long while yet. Unfortunately uncertainty is the life for us MMers.

Every day is a gift.

Andy.

PS. I’ll of been on 48 months of constant treatment in October.

• This reply was modified 9 years, 2 months ago by  andyg.

[andygParticipant]

Hi Sandra.

I’ve just realised I replied to an old post of yours in the GENERAL forum doh!

You may get more replies and advice if you start a new thread in the TREATMENT forum.

Like I said in the other post I’m don’t know much about light chains.

The minimum requirement for SCT I was told was a 50% reduction in paraproteins as your husband is light chains I not sure at what level a SCT would be considered. However there are lots of other things that would influence the prospect of a SCT.

I have been reading on a Facebook support group of a lady who is just starting home dialysis maybe that could be an option.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Sandra.

I’m also sorry you haven’t had any replies though I must admit I don’t frequent the forum as much as I used to. I should try harder.

As Ellen has said myeloma can and does cause kidney damage by blocking the fine tubes of the kidneys. Hence the need to drink two to three litres of fluid a day, mainly water, to keep the kidneys flushed.

Velcade is the drug of choice for patients with kidney damage because it’s easier on them than the other front line treatments.

I’m sorry I can’t help with much information about light chains as I don’t know much about them as my myeloma is measured by paraproteins at the moment but the treatment is, as far as I’m aware, the same. I’m sure Ellen will put me right if I’m wrong.

I do know staging is rarely mentioned and as Ellen says has not much influence in the treatment of Myeloma. The only time I come across questions about what stage I’m at is when I’m getting travel insurance quotes!

Every day is a gift.

Andy xx

[andygParticipant]

Dear dear Vicki.

We are so sorry to read about Colin’s death.

I do hope you are getting plenty of support at this terribly sad time. I hope your legendary strength can get you through the coming weeks.

Lots of Love.

Andy and Steph XXXX

 

[andygParticipant]

Hi Bijou.

The lesions by themselves don’t necessarily indicate you have myeloma. That’s why other tests are required to confirm it’s myeloma.

Treatment, if you have myeloma, will be given if you fulfill certain criteria it’s called CRAB I think it stands for Calcium, Renal, Anaemia and Bones. If you don’t fulfill the criteria you may not need to have treatment and you may be classed as having smouldering myeloma which means though you have myeloma it’s not causing any problems and can be left untreated until it starts causing problems if it ever does. Some smoulder for years without ever needing treatment.

The lesions could be Plasmacytoma and will probably be treated with radiotherapy.

They can’t treat you till they get the diagnosis right. I can understand your frustration but getting the right treatment, if it’s necessary, is key.

By the way we don’t stage myeloma in the UK.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Ben.

My myeloma didn’t respond enough to the normal first line treatments CDT and PAD (velcade) I was quoted the minimum requirement was a 50% fall in PP count for a SCT. I was then tried on DTpace which was another failure. Next in line was Revilimid and Dex and an appointment with the Professor who ruled out an auto SCT and suggested an allo SCT unfortunately only one match could be found and it wasn’t good enough for it to be safe to go ahead. Cyclophosphamide was added to my Rev & Dex as it wasn’t having any effect. Fortunately that did the trick and got my PPs down to around 11 where they stayed for awhile. I had a total of 22 cycles of Rev before it was deemed to be failing. I’m currently on Pomalidomide and Dex cycle 21 and my PPs are below 10 but again a SCT has been ruled out due the hammering my bone marrow has taken and the difficulty it would have producing the required stem cells. So the answer to your question is yes I’ve been on constant treatment with no break since October 2011.

Every day is a gift.

Andy

[andygParticipant]

Morning Bijou.

Have they told you that you’ll be staying in? I’m not sure why you’d need to. I’ve never needed to stay in overnight for tests. A BMB( bone marrow biopsy) doesn’t take long. It’s just a big needle into the hip bone. It’s uncomfortable some say painful it all depends on your pain threshold. I only have a local some have gas and air whilst a few get sedated for it.

I know there’s a 24 hour urine test for Free Light Chains(FLC) but that’s usually done as an outpatient. That could explain why the results aren’t forthcoming. The measure of PPs (paraproteins) is a simple blood test but in some patients the PPs don’t show. So they measure your FLC instead to see how active the myeloma is.

With your daughter getting married a week on Saturday I would mention it to your consultant and they will work round your wishes. IE. starting treatment after the wedding and making appointments to fit in with you being away. If you feel a bit intimidated by the consultant have a word with your specialist nurse first. It’s your life your body don’t get pushed into doing something that interferes with a big day in your life.

Of course I don’t think you’ve been officially told you have myeloma yet or have you?

Every day is a gift.

Andy xx

 

[andygParticipant]

Hi Jill.

I’m sorry that Pomalidomide didn’t work for your Mum especially since the side effects are very mild – well for me they have been. I know once it fails on me I’ll be tried on either Melphalan or Bendamustine which are both very harsh drugs. That was the plan anyway the last time my consultant and I talked about it.

Your mums numbers may not necessarily rise she may be stable and not being on drugs her quality of life may improve.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Mrsmac.

Sorry to read what your husband is going through it’s unfortunate his SCT didn’t work. I had a similar start to my treatment nothing seemed to work for me and I ended up on Revilimid, Cyclophosphamide and Dexamethasone for 22 cycles which held my myeloma in check. All the time I was on it my blood tests all came back low and I was neutropenic nearly all the time. Due the myeloma and the drugs taking out the some good guys whilst hitting the myeloma.

The way I see it is your husbands bone marrow has taken such a battering that it’s struggling to do it’s job. Time and maybe some helpful drugs are needed for his bone marrow to recover but time is dependent on the activity of the myeloma. My bone marrow recovered after Revilimid but we all react differently. It’s a balancing act the doctors have to find.

I can’t make a comment about his stage and if anyone has made a good recovery from it because I’ve not come across a similar situation. Everyones journey is different. Are his blood results stable?

I always say that you carers have the worst part of this myeloma journey having to watch and worry. At least we know how we feel and how much it’s affecting us.

I hope you both have some good news very soon.

Every day is a gift.

Andy xx

 

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