[andygParticipant]

Hi Eve and Helen.

Helen I hope the strong painkillers didn’t spoil your trip to Cornwall. I know they work killing the pain but I find they space me out and zombiefie, if that’s not a word it should be, me. Back pain? Not feeling up to much? I think that is a complaint a lot of us have unfortunately.
I’m starting my 8th cycle of Pomalidomide and got my latest PPs results 8.48!!!!!! That’s the lowest they’ve been since I was diagnosed. I’m hoping it can keep up the good work for a long time.

Eve you and Slim always amaze me. No matter what this horrible disease throws at you you carry on making sure things are done your way. You both are strong willed and know your OWN minds. It must make arguing with each other a long and rowdy affair lol.
It’s good to know you’re starting to get your way and Slims at home. I hope the support you are now getting enables you to get a bit of rest.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Maureen.
When I stared out Revlimid I was just on Rev and Dex. Cyclophosphamide was added to the mix a little later. Initially my PPs didn’t move much but, I think I’m quoting Dai here, Rev is known to be a slow starter. Anyway I ended up having 22 cycles of it.
Dex actually fights myeloma in its own way and sometimes is used on its own. Though I don’t think it’s used that way widely.
Cyclophosphamide is a cytoxin in that it kills cells. Unfortunately it a bit indiscriminate and kills good cells too hence it’s side effects. The main ones for me was 2 or 3 days of nausea, lack of taste and chemo brain.
As we know myeloma cell evolve and render drugs useless. I think hitting the myeloma cells from two or three sides at once may give a bit more longevity to the treatment.
Maureen were you and Ian looking for cyclo and Dex To be used as his next treatment? Then hold back Revlimid for later?
I do hope Revlimid does the trick.

Every day is a gift.

Andy xx
Member of the Dex wide awake club!

• This reply was modified 10 years, 3 months ago by  andyg.

[andygParticipant]

Hi Fiona.
I was put forward for an Allo over 2 years ago because I didn’t respond to any treatments. At the time it was regarded as a matter of urgency. A match was found and detailed blood analysis was done. Unfortunately the match wasn’t exact and I was told though the mortality rate was 20% in this case I’d probably not make it out of hospital! As this was the only match out of the whole register the Prof told us to go out and enjoy what we had and he’d see me again when things went seriously wrong.
I ended up on Revlimid for 22 cycles and have now been on Pomalidomide for 7 cycles. What comes next I don’t know. Possibly Bendomustine if I qualify for it.
I’m surprised your doctor predicted a length of time for Philip because one of things I have learned about Myeloma is that it’s unpredictable.
I’m still keeping the Prof waiting and I’m hoping not to see him again any time soon.

Every day is a gift.

Andy xx

[andygParticipant]

His kidneys must of recovered well because they don’t usually prescribe CDT if there’s any kidney problems. Velcade is the usually the drug used for people with kidney problems. Steroids can bring on diabetes.

Every day is a gift

Andy xx

[andygParticipant]

Wow Fiona.
Philip has been through the mill. Like you said in your original post he’s had no respite.
It’s strange how different levels of PPs cause problems. I read online of someone who gets problems when they go above 5!
I was put forward for an Allo unfortunately the only match they found wasn’t quite good enough. Luckily I got 22 cycles out of Revlimid or else who know what would of happened to me.
I hope Revlimid gets his PPs down and he gets to Allo quickly.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Fiona.
Seems as though I read something that wasn’t there. I’m sorry.
Why is the doctor pushing Philip along the Allo route isn’t an Auto SCT an option?
What was his last treatment? Was it Velcade because that in some cases works well at getting the paraproteins down but doesn’t keep them down for very long.
Which ever route Philip goes down I hope he gets a decent remission.

Every day is a gift

Andy xx

[andygParticipant]

Hi Loopyladye.
First of all welcome to the forum though I know you’d rather not need to be here.
I know what you mean about the relief of diagnosis. I had a bad back for 18 months before I was finally diagnosed and it was a relief to know I wasn’t imagining it and it had a name then came the shock as it sank in I had an incurable cancer.
I was in and out of hospital a few times with infections and back pain, I fell over, on my first course of treatment CDT.
It must be doubly frustrating for him to struggle to get about and having to cope with all the drugs too.
Has any mention been made of a stem cell transplant (SCT)?
Wishing you both the best on your meyloma journey.

Every day is a gift

Andy xx

[andygParticipant]

Hi all.
I agree with all that Chrissie and Rebecca say.
Though I’m not as optimistic as Chrissie about a daily tablet to maintain our condition. My reason? It’s because myeloma isn’t a single disease or maybe that it’s not caused by a single entity. That is why we all have different journeys and react differently to different drugs. Genetics are starting to be used to determine the kind of myeloma you have and they will enable the medics to prescribe the most effective drugs for the type of myeloma you have. As usual the cost implications are holding up this diagnostic tool but I think it is starting to be used in the USA. So unfortunately I don’t think a one drug fits all will be developed. A cure will be similarly problematic. Of course once genetics identify the most common form of myeloma the drug companies will concentrate on this group to maximise their profits. There will sadly be winners and losers in the myeloma family. These are just my thoughts.

Nikki – I remember now why I was told not to swim now! It was because I had a Hickman line in.
A few more Dex side effects hiccups and constipation. Though I’ve found most chemo drugs effect your errr motion to some extent.
Another good tip I was given is to keep a daily diary of how your feeling what drugs you’ve taken and any side effects a pattern will emerge and you’ll come to know what to expect and be prepared for it. This will give you back more control over your life. Diaries are available for free from this web site.
I’ve had a difficult journey with myeloma and my attitude is to try and live as I was before diagnosis. Obviously there are things I can’t do now like work! Or run – I used to do marathons but we get away now as much as before diagnosis abroad twice a year to the lakes a couple of time a year too. Though we know those plans could fall through if I take ill.
Take each day a day at a time and if you feel too tired to do anything do nothing listen to your body. Oh by the way fatigue is a common side effect of myeloma.
Right that’s my post Dex ramble over.

Every day is a gift.

Andy xx

[andygParticipant]

Hi everyone.
Welcome to the new newcomers to the forum.
Nikki – myeloma is cancer of the bone marrow, plasma cells in reality. They go wonky, for want of a better word, and start producing paraproteins, which serve no useful purpose.
They compete with your white cells I think and this is why you will become susceptible to infections and find it hard to fight infections off.
They also interfere with the formation of bone and this results in the softening in the bone.
Sometimes holes appear in bone too and this can happen anywhere from head to toe. The first indication is aching bones then maybe painful bones but sometimes the first you know of it is when a bone breaks for little or no reason. You’ll become a friend of the X-ray and MRI scanners.
I can’t understand why you were told 4-5 yrs when everyone’s myeloma is different and everyone responds differently to the treatments. There is a quote that 20% of people diagnosed with MM die within six months but these are old statistics and cover people who would of died anyway with or without MM. It’s not helpful or accurate.
Your time with MM will be individual to you there will be similarities to other journeys but essentially your journey will be almost unique.
I also had 90% “bad cells” at first BMB I’m surprised about going swimming I was advised not too but I guess that all depends on your blood test results.
Right it’s late hmm or early it’s after 2am let’s see if I can beat the Dex effect and get some sleep.
Good luck at the hospital – oh a side effect of Zometa, the common bone strengthener, is flu like symptoms. IE achy bones and joints not to bad but noticeable.s

Every day is a gift.

Andy xx

[andygParticipant]

Hi Fiona.
I was diagnosed Oct 2011 with my PPs at 49 the lowest my PPs have been was 11.4 but not for very long.
Never been in remission and went through all the standard treatment in a few months none of them worked. Then went onto Revilimid which wasn’t widely available at the time and got 22 cycles of stability before that ended. I’m now on cycle 7 of Pomalidomide which is only available through the Cancer Drug Fund.
So I’d disagree with whoever told you remission is easy to get to. True complete remission is quite rare.
Like Philip I’ve not had a break from chemo. 34 months and counting if the mm doesn’t get me the drugs will! Everyone’s journey is different as is said time and time again.
Hope everything goes well and Philip gets his Allo. I couldn’t go for an Auto or Allo but that’s another long story.

Every day is a gift

Andy xx

• This reply was modified 10 years, 4 months ago by  andyg.

[andygParticipant]

Hi Maureen.
I can understand what you mean about using up the treatments available too quickly. I got through most of the standard treatments in six months and none worked. I was put on Revlimid as a last hope, it wasn’t standard treatment then, and after a slow start plus the introduction of cyclophosphamide it got my PPs down to the mid teens. Not great but it kept me stable. When it began to fail I convinced my consultant to try a few more cycles which she did however my PPs kept climbing. My thoughts were – this is the only drug that worked for me so what are the chances of the next one working? What is the next drug? Is there a next drug? Anyway my consultant managed to get me on Pomalidomide, not available generally, through applying to the cancer drug fund and it seems to be working. Now I need it to work for a while till the next drug comes along and hope that will work too. Otherwise I’ll be onto some harsh old fashioned treatments!
I’m don’t know what’s a bad or good FLC reading but if you can get it stable and Ian’s other bloods remain good with no other typical mm problems that’s not too bad. That’s what happened to me on Revilimid though my bloods weren’t very good especially my neuts 0.5 – 1.0 but I hung in there for 22 cycles. If Ian is feeling good and stronger that’s a good sign. I prefer to go by how I’m feeling rather than the tests.
Ok you can tell I’m on my steroids sorry for the long ramble.
Good luck with everything.

Every day is a gift.

Andy xx

[andygParticipant]

Hi David.
You do seem to be giving the medics a run for their money. Boring out your prostate doesn’t sound like fun! and now a lump of flesh to be removed as well! Makes having you two teeth extracted sound like a walk in the park.
You’ll be glad when July is over.
I get to see my consultant at the end of the month I wonder what she’s got in store for me?
Good luck with everything David hope you can pee freely soon 😉

Every day is a gift

Andy

[andygParticipant]

Morning Nikki and Wendy.
First of all steroids will give you lots of sleepless nights it’s a very common side effect of Dex. They lift you up and you’ll talk a lot! Maybe eat more than usual and possibly even work around the house doing odd things! Then you’ll crash and become moody and argumentative. Such is the joys of dexamethasone. Oh and sweats is also another common side effect.
Remember to keep up your 3 litres of fluid a day. Your kidneys come under pressure from the drugs and myeloma itself.
Nikki myeloma lives in the bone marrow not the bone itself. It causes damage to the formation of bone and softens them which in turn causes them to be easily damaged. That’s why you have a skeletal survey when diagnosed so they have a reference point and to see how much damage has already been caused.
My major problem is my back with my vertebrae being damaged and resulting in losing 3 inches in height!
You will be given bone strengthening infusions every 4 weeks usually Zometa.
I found the first few cycles of chemo very harsh and picked up lots of infections which isn’t good for myeloma patients. Your body does adapt to it though. Just as well in my case because I’ve been on chemo since oct 2011.
I can’t emphasise enough that no two journeys with this horrible disease are the same. Some sail through treatment and SCT and have a long remission. Others struggle to get to SCT. There’s lots of variables but with the new drugs coming through treatments are getting better and easier.
Don’t forget ask any questions you have on here no matter how daft you may think they are. There should always someone to give an answer.
Most important keep your fluid intake up – 3litres a day minimum and stay away from ill people. Infections are dangerous because myeloma depresses your ability to fight off infections. Oh and if your temp goes above 37.4 ring your day unit or haematology ward for advice.

Every day is a gift

Andy xx

[andygParticipant]

Hiya Vicki
I only take Dex once a week now. 40mg every Tuesday! So I’m usually awake Tuesday nights and part of Wednesday night. Though it’s not been to bad this week.
My PPs showed a slight rise at the end of last cycle tut guess I’ll never get them down to single figures. I feel ok though my back is starting to let me down again.
I’m sure Colin, if he was anything like me, was stressed whilst on holiday worrying about everything. I know was the first trip we had abroad. All the what if’s were running through my head. Once home with my infections I relaxed and everything returned to normal, whatever normal for me is, as I got back into the usual routine.
I’ve not read that about an 18 month average for remission after SCT and it doesn’t sound very high to me. Though what do I know lol.
Ok today has turned into tomorrow or is that tomorrow has turned into today? Either way I’m going to try and get some sleep now.

Every day is a gift.

Andy xx

[andygParticipant]

Hi David.
Hope your visit re prostate goes ok.
I’ve had a catheter in for at least 2.5 years now guess I’m used to it now! Though it can be a nuisance at times especially in a pub!
My appointments seem to be piling up and they’re spread over the next 5 months though none clash with anything planned as yet. My main worry is my back review in November I may have to go under the knife again after that one though hopefully it’ll fall between holiday seasons.

Every day is a gift.

Andy

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