[andygParticipant]

Hi Helen.
I’ve got to say that your consultation sounded very much like the one we had with the prof. almost 2 years ago. He did scare us a bit and was pushing us towards an Allo since my bone marrow was to battered to be considered for an auto. Though in my case a match for an Allo couldn’t be found.
I had 22 cycles of Revlimid and though it kept my PPs in check it did hammer my other blood readings. So much so I was nearly always neutropenic – however you spell it! I moved on to Pomalidomide in January and though initially I had problems with sepsis my last couple of blood tests have been good. Latest – HB 114 WBC 4.1 PLTs 186 Neuts 2.8 and no major problems with side effects. So hopefully you can give Pomalidomide a go and it’ll give your bone marrow a break. Though as we all know everyone reacts differently to treatment.
I do hope you get to give Pomalidomide a try and it works for you. Personally I would give the drugs a chance before I went down the Allo route, though I would say that with no match available to me

[andygParticipant]

Hi Sal
I’ve had DTPace. I was stuck in hospital for the 4 days with all the infusions going on 24/7 You don’t get much sleep with the alarms going off all the time! And going to the loo is an experience and requires a lot of dexterity. Don’t know his you’d manage if you were in a rush!
I only had one cycle as it was deemed not to have worked. I had a BMB and although most of my bone marrow had been wiped out the PPs were still in significant quantities. The only side effect I recall was not needing to shave for a few months afterwards.
I can only recall one other on here going through DTPace and it was a success for him and he went on to SCT.
I hope your husband has a good result with it too.
I wouldn’t worry to much about my lack of success because since diagnosis in Oct 2011 I’ve been through nearly every drug in the myeloma armoury and only one drug has worked and that only got my PPs down to 12 for one cycle the rest of the time they were around 18-20

Hope everything goes to plan.

Every day is a gift
Andy x

[andygParticipant]

Hi Helen
Sorry to hear that you’ve relapsed. You really have had a hard past few years.
Speaking as someone who doesn’t know what it’s like not endure the round after round of treatment, except brief spells when I was to ill for the treatment, I get really jealous of those who go into remission. As you know I’ve been through the myeloma handbook of drugs and the only one that’s had an effect so far is Revlimid. Though Pomalidomide looks promising. So I’ve had just over two and a half years of pill popping and I’m running out of new pills to try. My consultant says Pomalidomide isn’t the last treatment I can try but I do wonder what’s next! I suppose it’ll be a trip up to see your Prof again.
I think planning things is really difficult people keep saying “oh do you have any plans for Xmas” and I say to myself “only hopes I have for Xmas is to be alive” but I keep it all to myself. I try not to plan things more than a couple of weeks away. Though something’s have to be looked at longer term and I just reply I’ll do it but depends how I’m doing at the time.
Sorry I’m starting to ramble! Steroids.
If you do go onto Pomalidomide I can report side effects wise I’m not having any problems now. Though it did hammer my bloods initially, resulting in two stays in hospital, my bloods now are the best they’ve been since I started the myeloma gig. Hopefully they’ll stay that way because it’s Greece time of the year again. We go on the 18th if everything stays ok.

Good luck Helen.

Every day is a gift
Andy xx

Ps. I know you would rather stay working but I think not working will be good you. Fingers crossed xx

[andygParticipant]

Hi Eve
Hope Slim is doing ok now. You must be worn out.

Andy xx

[andygParticipant]

Hi Vicki
The collapsed vertebrae was written in my discharge notes. When I reread the notes the doc was comparing my new X-ray to one taken in 2011! So I don’t think that was new or the cause of my pain. It was more likely a side effect of my radiotherapy. Oh welcome back 😉 glad you had a good holiday.

Hi Helen
Welcome back from your holiday hope you had a good time. I’m doing ok now thanks Helen my back is ok well as ok as it gets. Feeling the benifit of the radiotherapy now. My last MRI scan showed a little more damage to T1 and T12 so I’m crumbling still though slowly. I seem to be getting along ok with the Pomalidomide no major side effects if you ignore the two incidences of sepsis.

Hi Eve
I go straight to the day unit or if at night I ring the ward and they get me admitted. I don’t mess about with the doctors or A&E it’s what I was told to do from the very start.
Unfortunately when I have been admitted recently the ward has been full so I get a bed first in the AEU then get shipped out to another ward if possible. I know what you mean about knowing more than the medics on the other wards though you do have to keep them right lol till my consultant or specialist nurse pops by. I’m grateful for everything Eve especially days out of hospital. My aim is to get through April without a stay in hospital.

Every day is a gift

Andy xx

[andygParticipant]

Hi Helen.
We’re staying in Bowness. It’s a bit blowy here at the moment and it’s due to rain heavily in the next couple of hours! It’s supposed to be dry tomorrow just in time for our journey home.
Grooms woman? that’s a new one. Hope you have a good day. Didn’t they consult you when they arranged the wedding date lol.

Every day is a gift.

Andy xxx

[andygParticipant]

Hi Eve.
Not had any feed back yet about Pomalidomide. I suppose my next pp test will give an indication.
I feel ok but the proof will be in the blood tests.

Hi Maureen.
I’m just packing all my drugs for the trip to the lakes tomorrow. We won’t get there till just after lunch tomorrow. So I suppose a drink tomorrow night is possible if that’s ok with you. I’ll have to check with the driver when Steph gets home from work tonight.

Every days a gift

Andy xx

[andygParticipant]

Good evening me hearties.

Eve – I have Slims problems with reading. It’s a nightmare. If I put a book down for a couple of days I have to go back over what I’ve read to recall what it is I’m reading! TV series are the same – so I record them now and watch them one after another over a couple of days instead of weekly.
Oh I’m sorry it looks like Dex has failed me tonight I’m not in a rant mood – YET 😉
I may even try to get some sleep shortly.

No more fog and sex chat please. Hmmm the reads naughtily lol or is it just the way my mind works?

Every days a gift.
Made extra special with a little sunshine

Andy xx

[andygParticipant]

Hi Folks.
Thought I’d do a post that wasn’t Dex fuelled 😉
I start my second week of my third cycle tomorrow Maureen so it’ll be sex oops I mean Dex first thing in the morning 🙂 Hmmm just realised I’ll be on Dex the first day at the lakes next week that’s going to be fun lol. We’re staying at Bowness Maureen not too far from Grasmere.

Helen – you’ve got a busy year ahead of you I hope every thing goes to plan. Find it hard to believe your 60 in May! Steph is ok – a bit tired after running about after all the time and the long journeys to work. She is trying to alter her working hours so hopefully that’ll give her more time to relax.

We just got back from a weekend in Nottingham, it’s the first time we’ve managed it this year, Steph got to see her dad and sister and we had a catch up with a couple of friends. Which meant visiting a couple of pubs 😉

Got my latest blood test results on Friday when I went in for my Zometa my specialist nurse was really excited about them my HB was well up and my neuts were 3.3 I was a bit sorry for her when I reminded her I’d had a couple of units of blood and some GCSF injections whilst I was in hospital. Oh well hopefully they’ll stay up.

Ok that’s me up to date I think. I may have Dex fueled rant tomorrow night lol till then you pirates can hijack my thread 🙂

Every day is a gift
Grab them with both hands

Andy xxx

[andygParticipant]

Tonight is my Dex night and I’m not going to bite! Wow that’s a first.
I don’t know a lot and I’m not going to go into it here 😉

All the best everyone

Every days a gift
Today is the start of another new cycle

Andy

[andygParticipant]

Hi Chris
I know what you mean about the risks being pretty horrendous. I had kyphoplasty last August and had to sit through all that could go wrong and it was very scary. In the end I decided to go ahead with it.
I had an overnight stay after the operation to ensure my bloods were ok. I was operated on my T11&12 Afterwards recovery of my back took a couple of weeks, though Steph could see my posture had improved straight away, with only the odd paracetamol necessary.
It has helped me pain and movement wise.
Was it worth it? Yes.
Would I do it again? That’s an answer I may have to give sooner than I hoped! I suppose it would depend on the benefits I could gain.
The consultant wasn’t very hopeful first time round.
I don’t guess I’ve helped much but what decided me was knowing they have to spell out the worst cases just in case. They are rare side effects.
Every operation and drug has it’s risks.

Every day is a gift
To be cherished

Andy

• This reply was modified 10 years, 8 months ago by  andyg.

[andygParticipant]

Hi all
Vicki – your right there does seem to be a shortage of light hearted posts of late. We all seem to have dug into our own little MM trenches and battling away the best we can. With little sunshine to talk off.
I blame the drugs for taking the edge off my beer taste and just when I get it back that bloody Revlimid decides it’s done with me and I have to move on to Pomalidomide. A new routine and new drug for me to get used to! Well I can tell you my beer tastes fine now 😉 just wish I could keep out of hospital long enough to get to the pub.
Anyway had my tea round the pub tonight managed a pint too, lovely, had my Dex earlier today yep started cycle 3 today lets hope I get through without the now customary stay in hospital.
Off to the lakes shortly hmmm better hide the thermometer 😉
Helen – I hope your not over doing it at work.
Will you be going to the Newcastle info day? It’d be good to catch up and have a good old natter. Steph and I will be going as this year it doesn’t clash with our trip to Greece that is already pencilled in.

All the best everyone.

Every day is a gift
Enhanced at time with alcohol – cheers

Andy xx

[andygParticipant]

Hi Jeff
I’ve just read through your posts and can understand your concerns. As someone who has been through two and a half years of chemo which is still on going! Maybe I can shed some light on your consultants thinking even if he’s not telling you! Although your PPs are rising they don’t seem to be causing any other major problems. I know your feeling tired and genera all not 100% but in my opinion they are holding off treatment due to two factors
1. Your age 2. Quality of life
I’m 55 and it was explained to me when I was told auto SCT was not possible and Allo SCT unlikely that I should enjoy the quality of life I had even with the side effects as long as possible. My QofL has been ok but I’m youngish and strong so can put up with the side effects. I was told bluntly an Allo SCT might work though it was doubtful I’d survive the transplant and if it worked the recovery time could well over a year and may not even be successful. I was told take the drugs enjoy life whilst you can. The underlining sentiment not spoken was you ain’t got long don’t waste what you have being more sick than you need to be. That was 2 years ago and I’m still around bugging people and that sentiment still applies.
Oh dear I’m rambling sorry it’s my Dex night!
What I’m trying to say is I think they’re keeping you off the drugs as long as possible so that you can enjoy each day the best you can and when they have to restart treatment I think they’ll do it gently to try and maintain your quality of life.
I hope that explains a little and I must emphasise that only MY opinion on limited knowledge I could be talking out my backside! There’s no reason why you can’t go plenty of years yet with MM and the newer drug do gave less side effects.

Every day is a gift
Cherish everyone one of them

Andy

[andygParticipant]

Hi Frances.
I suffered back muscle spasms early on – I think it was even before I was diagnosed – I was told what is happening is my muscles were protecting me from seriously damaging my spine. So even though it was really painful it was helping me from doing more damage. If that makes sense!
In my case X-rays revealed vertebral wedging all along my spine and lead to the diagnosis of MM.
I was immediately put onto Zometa and adcal to strengthen my bones and given strong pain killers. Ibuprofen was stopped – bad for the kidneys – as was diclofenic for the same reason.
It took a while for things to settle down and I had to change how I went about things to avoid upsetting my back, sleeping was a nightmare.
Now 2 1/2 years on after surgery and drugs my back pain is beginning to resurface again. I’ve just been referred to see a radiologist to see if they can help.
Good luck with your treatment I did have succes I’ve been off painkillers 99% of the time and I usually only use paracetamol.

Every day is a gift.
Enjoy them

Andy xx

• This reply was modified 10 years, 8 months ago by  andyg.
• This reply was modified 10 years, 8 months ago by  andyg.

[andygParticipant]

Hi David.
I have a SSD as my main drive with the operating system on it! Wow the speed of start up and shut down is incredible. No hanging around for 20 mins for it to switch off!
That’s going to be a long job David. I need to get all my photos together they’re spread over old hard drives, DVDs, CDs and memory cards!
Still this weather is making it a perfect time to get stuck into it!

Every day is a gift

Andy

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