[andygParticipant]

Hi Vicki.

You’re right. Allo is donor cells and auto own cells.

How’s Colin getting on with the Bendamustine?

Get some trips planned.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Helen.

I find it hard to fill my day. Somethings I can only do for short periods of time due to my back problems. I get bored sometimes though at the end of the day I wonder how it passed so fast with me achieving so little.

When the prof. suggested the Allo route it seemed like it was the final roll of the dice to us. I know you had a bad time after your SCT but does that mean you’ll have the same problems again? or is it the fear it may be as bad the overwhelming thought? I’ve read that recovery from Allo is milder than an Auto though as with everything myeloma nothing can be guaranteed. My view on SCT’s if you can get some remission and stay drug free it will buy time whilst newer better drugs become available.

I am doing well on Pomalidomide and my quality of life is good. I had a good year last and I’m hoping this year will be similar. I have the usual Dex problems and errr movement difficulties but other than that I’m fine.

Make sure you get your travel bags back into use. We are looking at booking a holiday in the UK in spring not sure where yet because our usual trip to the lakes is not possible this spring due to the B&B owner of where we always stay going on holiday! The cheek LOL. So we are using it as an excuse to go somewhere different.

Right is it time for a nap or should I get up and do err something? Decisions decisions.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi Helen.

Tuesday is my DEX night too though sometimes I do get to sleep.

I’ve found Pomalidomide to be kind to me though I guess everything is relative so I’ll quantify it a bit. I’ve found Pomalidomide to be a lot kinder to me than Revlamid, Cyclophosomide and Dex.

I have just started cycle fifteen of Pomalidomide, Gideon Osborne must love me, and fortunately it is still working so the Bendamustine can be kept in the cupboard for now.

How was the wedding I hope it was a great day and the weather was kind for you all.

I tested for an Allo as you know. No siblings matchup and only one match on the donor lists and he turned out not to be a close enough match. I have read that there is a 90% mat rate.

GVHD is the big problem with Allo transplants though I have read a little of it is good for a long remission.

Just had a thought, unusual for me lol, couldn’t you go down the autosct followed by a mini Allo route? Providing they find your stored stem cells.

Not sure what questions to ask other than how rejection of donor cells is tackled. I know it’s an area that is improving all the time. I’m sure I was told PPs levels or however they monitor is not  important because your marrow will be ” cleaned” out to be replaced with a clean donor marrow.

Are they planning on keeping you on Pomalidomide till it fails before you go down the SCT route?

I hope everything thing goes well.

The next time you see professor Jackson remind him I’m still waiting for an appointment to see if a SCT may a realistic chance for me lol.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi Helen.

Flights to Greece are booked. Middle of May all being well.

I’m off to read your post now so I will keep my questions and observations for there.

Every day is a gift.

Andy xx

 

[andygParticipant]

Hi All.

Guess I got a bit over confident lol. Last week spent 3 nights in hospital with a high temperature due to an infection somewhere. I had a cold and a cough luckily it didn’t go onto my chest. Anyway I’m home again feeling ok still got a few more days on oral antibiotics. Guess I should stay away from ill people or people in general! Nah that’s not on got to get out and live. Luckily my local pub doesn’t get too full.

Cheers. Every day is a gift to be enjoyed.

Andy xx

[andygParticipant]

Hi Susie.

Don’t get hung up on the the numbers too much it can spoil what you have.

PPs can still drop after treatment stops. PPs are a measure of myeloma activity but must be taken with the rest of your blood results. You will be still monitored as you need blood tests prior to your Zometa infusions.

SCTs are offered to patients who are fit enough to be able to get through the process which is very hard process. They used to have an age criteria but it was found to be not fit for purpose. So now if you’re fit enough age doesn’t or shouldn’t come into it. SCTs are still regarded as the gold standard though with the newer more effective drugs coming along that may change in the future.

Zometa side effects are on the mild side to most people. They are very much like flu symptoms achy bones and joints for a day or two. I never took paracetamol though it is good if the side effects bother you. Another side effect that needs looking out for is osteonacrosis of the jaw. A rare side effect that is supposed to only effect 3% and of course I’m in the 3% lol As Jeff points out good oral hygiene is a must when on zometa.

Every day is a gift.

Andy xx

Ps. I wish I could get my PPs down to 3 lol 6.4 at my last reading but that is the lowest they’ve been after 39 months of chemo!

[andygParticipant]

Hi Vicki and Colin.

Sorry I’m a bit slow with my response but I had a little holiday curtesy of the NHS! so had no wifi and my phone reception was totally rubbish.

I have been told that Bendamustine could be my next drug of choice when Pomalidomide starts to fail. Although it’s an old drug, I was told it’s derived from mustard gas!, it’s new to myeloma treatment. I haven’t read up much about it but I will now Colin is going to be treated with it. I know two at our day unit who were tried with it. I’m not sure how they reacted to it. 30-60% effectiveness is not a bad response rate for Myeloma drugs but there again statistics and what they refer to can be confusing.

At our support group meeting last week, which I missed even though I was only a few wards away, professor Jackson said that for accurate monitoring you need both PPs and free light chain results. He also said he’s not a fan of BMBs for accuracy due to the fact it’s an isolated sample and could hit a “hot spot” or miss myeloma altogether. Oh that news was passed on by Steph when she visited me after the meeting.

Not on Facebook! You miss all my updates about what I’m getting up to lol. There is a myeloma support group on there too. You’d recognise quite a few members and I find it’s easier to post on there than here.

I hope Colin is getting on with his new treatment early days I know. They tend to be the hardest!

Right time for some Bendamustine research. Yep it’s my weekly Dex night.

Every day is a gift.

Andy xxx

[andygParticipant]

Hi Noel.

I had the same dilemma in October 2012. I was told at the time an Allo was my only way forward, only chance really because none of the treatments worked well enough for an autosct and my marrow was that hammered by the drugs they wouldn’t produce enough stem cells. I was told all the stats 20% mortality rate etc etc but said I’d go for it anyway as I didn’t have any choice really at the time. I was on Revlimid and that wasn’t working. They did all the blood tests no siblings matched and only one on the donor list matched! That match was deemed not good enough.

They then added Cyclophosamide to my Revilimid and dexamethasone and I had a response. I got 22 cycles before it stopped working and I’m now on my 15th cycle of Pomalidomide. I’m still waiting for the call to say they’ve found a match though an Auto SCT is going to be investigated as Pomalidomide has been kind to me.

Fingers crossed everything goes to plan Noel and you get a good response to your Auto.

Every day is a gift.

Andy

[andygParticipant]

Hi Graeme.

I second Maureens suggestion. We’ve been using nowicantravel.com for the last couple of years and found them very good. We only travel to Greece for a week at a time and pay less than £70 for both of per trip. We always deal wth them over the phone. I’m on treatment all the time and have been since diagnosis in oct 2011 and I’ve never had a SCT and they insure me without any problems todate.

Every day is a gift.

Andy.

[andygParticipant]

Hi.

Welcome to the forum.

I’ve not come across Lupus or Cryoglobulins on here before. So I did a little research and found out about Lupus here – http://www.lupusuk.org.uk and saw some of the same drugs are used in it’s treatment as are used in treating myeloma. When I read up on Cryoglobulins I noticed Multiple Myeloma was mentioned. Like I said I’ve not come across either before.

As to how long your blood test results will take it varies on where you get tested. Some of my tests come back the same day another takes a couple of days but I know other members of this forum can wait a week or more for results.

We have a help line on here they maybe able to help or point you in the right direction.

Best of luck.

Every day is a gift.

Andy.

[andygParticipant]

Hi.

Welcome to the forum. There’s a lot that will be taken into account by the medics as to how they manage your dads treatment if they do treat him at all. They have a set criteria they work to and if your dad doesn’t fall into this category they will just monitor him. However if there is a need for treatment then your dads current fitness and health will be taken into account as to how they treat him. Quality of life is a major factor in treatments as some of the drugs are quite harsh. Generally the younger and fitter you are the harder they hit the myeloma and the harsher the drugs are.

I do hope the tests show that your dad is in the pre treatment stage, smouldering, and only needs monitoring. People can smoulder for a long time.

Every day is a gift.

Andy xx

[andygParticipant]

Hi all – thanks for your good wishes..

Linda – lucky, myeloma and me don’t seem to happen together in the same sentence let’s hope that changes.

Susie – it’s taken a while to get where I am at the moment. I only hope that turn doesn’t turn back on itself too soon.

Finn – I like your theory. If I do get to SCT I will try and prove it.

Maureen – if everything goes well Ian and I could be going through a SCT at the same time.

Jan – my PPs have been falling ever since I started Pomalidomide last January the first couple of cycles showed a good fall since then it’s been a little at a time BUT remarkably always down no blips yet! I’ve probably spoke too soon lol.

Thanks once again for your support.

Every day is a gift.

Enjoy them the best you can.

Andy xx

[andygParticipant]

Hi Vicki.

I have been referred to Prof. Jackson at Newcastle Freeman hospital to see if an Auto SCT is now an option. I’m not counting on it but will wait and see what the Prof. says. A SCT could buy me more time for new treatments to come along since I’m nearly at the end of the drugs list. I’m not sure if my bone marrow has recovered enough to be able to provide enough stem cells. Time will tell.

It seems to be a common theme on here about the lack of information. There’s nothing worse than being left in the dark. I must say I always know what is in store for me. Maybe that’s down to my consultant being the same doctor I see all the time. Or it could be that I’m such a strange case that I’m her pet project lol.

Hopefully Colin will soon be on his next leg of the myeloma journey and on his way to remission.

Steph is doing ok thanks Vicki though as you well know this Myeloma gig is just as hard or maybe even harder on carers than on us that have to take the medicine.

Every day is a gift.

Don’t spoil today by worrying about tomorrow.

Andy xx

[andygParticipant]

Hi Vicki.

Velcade never worked for me. I was on PAD and it never worked but there again nothing worked for me till I was put on Revilimid and that only seemed to work once Cyclophosomide was added. I had 22 cycles all together before I was switched to Pomalidomide which I’ve just started my 14th cycle of. My PPs were 6.4 at my last blood test.

Velcade a new treatment? I was on it in 2012 lol! I think it’s like marmite it either works and works well or it fails miserably.

Sorry you’re having to cope with the failure of a treatment Vicki but don’t give up hope there is still other treatments to try. We were told in 2012 to go out and do what we can whilst we can with the clear implication I didn’t have long left. Well I’m still here and doing the best I’ve done since diagnosis in 2011.

Still living my life everyday as it comes.

I hope Colin gets a treatment that suits him soon.

 

Every day is a gift.

Andy xx

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

[andygParticipant]

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 have.

As to mouthwash my dental surgeon told me not to use over the counter mouthwashs as most contain alcohol, which is a no no in the mouth regularly, and just to use salt water instead. He told me to add half a teaspoon of ordinary salt into a glass of warm water and to hold it in my mouth, not swish or gargle, for two minutes four times a day. I guess twice a day would suffice if you aren’t having any problems.

Every day is a gift.

Andy xx

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