[andygParticipant]

Hi Jan.

I think it’s a site problem I can’t post anything either though if you’re reading this it must of worked lol. Anyway I’m giving up posting tonight time to watch some tv curtesy of Dex.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Jan.

The sepsis was probably caused by the pneumonia. It’s when the bodies immune system goes into overdrive fighting an infection, I think. It can cause damage to your organs and can be fatal when serious as your organs shutdown.

Fortunately I think I’m making good progress along the road to recovery as I’m able to manage to get out a little now and even manage to get to the local for a drink or two.

When I started Pomalidomide we were told at a support group meeting that Pomalidomide was £850 a tablet and Revilimid was £550! That meant Pom was approx. £230,000:00 per annum and Rev was approx. £150,000:00 per annum. I know the prices have dropped since then and my figures are for someone who was on them till they stop working. Hmmm I wonder who fits that criteria? Oh me lol. The figures in Daily Fail are probably an average of all the patients being prescribed the drugs and some will have a lot fewer cycles. I think! Pomalidomide is around the £500:00 a tablet mark now but I’m not sure.

The way it’s going we won’t have access to any of the new drugs unless we fund them ourselves. How would we be able to do that? Not through insurance because they won’t insure existing conditions though healthy people would be able to if they have a crystal ball to be able to see myeloma coming. Hmm insurance paying for treatment that sounds like a private health system.  Are we going to suffer as an example for the government to use for justifying the privatisation of the Nhs?

Every day is a gift.

Andy xx

[andygParticipant]

Hi all.

Well I’ll try this again since my original post has disappeared – I blame Dex!

Anyway it was just a little update of how I’m progressing. I’m feeling a lot better now and I’m  almost back to where I was before my extended holiday on the NHS. Physically I’m improving steadily. I had a visit from my Intermediate Care manager today and she couldn’t believe how much improvement I have achieved in just a few weeks. Her four months to get my fitness back is looking well wide of the mark.

Not much else to report really so no Dex ramble tonight.

I hope everything is going well for you all.

Every day is a gift.

Andy xxx

[andygParticipant]

Hi Maureen.

It’s a small world isn’t it. We’ve been to Harrogate and Rockcliffe hall in the past few weeks.

We went to Harrogate with my brother and his wife and met up with our sister and her husband, who live there, to go to a concert in Harrogate.  We saw Squeeze and John Cooper Clark after a lovely meal in a nearby hotel. We went to Rockcliffe Hall for Sunday lunch, again with my brother and his wife, and were really impressed with the standard of food, service and the surroundings.

Glad to see Ian is improving and I hope you get to have that holiday soon.

Every day is a gift.

Andy xx

ps. Tonight’s production was brought to you curtesy of Dex.

[andygParticipant]

Hi Helen

I have never heard of a treatment called ESHAP. Going to have a look around to see if I can find anything about it. Whatever it is I hope it works for you.

Every day is a gift.

Andy xx

[andygParticipant]

Good morning. I assume your partner started on Velcade due to kidney problems because the usual first treatment is CDT. I wouldn’t worry too much about the next treatment options as there is several available. Either standard treatments or newer drugs available through trials. Revilimid hasn’t been completely removed from the CDF and is available at second relapse. There are new drugs coming along all the time and hopefully some will get approval in the next few years.

SCT also seems an option to me but all this needs to be discussed with the consultant if and when a relapse occurs which hopefully is a long time away.

Please don’t get hung up on what treatment is next as it will spoil what you have now. Enjoy what you have now and if your partner relapses your consultant will guide you to what’s next as treatments change and improve all the time and by that time both Revilimid and Pomalidomide may a standard treatment.

Good luck to you both and I hope your partners remission continues for a long time to come.

Every day is a gift.

Andy

[andygParticipant]

Hi All.

Just a little progress report.

I’ve started my next cycle of Pomalidomide cycle 24 I think and tonight is my Dex night 👀 so I may ramble on a bit or a lot. 😊

Ok progress – I’m feeling a lot better eating and drinking is almost back to normal well myeloma normal. I had a major breakthrough and big boost last weekend in that we went out Friday,for dinner, and Saturday,whilst waiting for take away to be ready, to our local and then went out to lunch Sunday. Of course beer was drunk only in moderation of course. 😇 Though my appetite is recovering well my physical side is progressing slower so I am making sure I can keep safe whilst I’m out.

Had a visit from a Physio torturer today and he was surprised how far I’d progressed so now my torture Oops 😉 I mean exercises are going to be revised which I take to mean toughened up but that’s good news I think lol because I want to get back to full strength as quick as possible in case I have anymore medical mishaps.

Jeff you don’t know how much it meant reading your similar “out of it” experience. I don’t know why but just knowing someone had similar experiences makes it easier to accept it. Our ICU run a support group and we’re thinking of going and hopefully meet people who’ve been through the same experience. The thing that gets me is how  real these “memories” are it’s very disconcerting and even now I’m still remembering things that never happened! Some of my “memories ” were/are quite disturbing.

Ok the Dex rambling is coming to a close now  you’ll be glad to know as my iPad has only 4% battery life left.

Every day is a gift.

Andy

 

• This reply was modified 9 years ago by  andyg.

[andygParticipant]

Hi David.

Sadly I think the chances of them altering their stance are slim and if they do it will be too late for some.

I know quite a few MMers on here, Facebook and Twitter who are running out of treatment options and the removal of Pomalidomide has come just when they were hoping to move on to it! I myself have been on Pomalidomide for nearly two years now and it’s kept me stable. I also know others who couldn’t tolerate Pom and had to stop taking it quite quickly. It’s removal from the CDF removes another weapon from the armoury and leaves the prospect of having to use older more harsher treatments and I can’t see the government oops the CDF funding the newer drugs in the pipeline because I expect them to be even more expensive the Pomalidomide and no matter how they dress it up that’s the reason our drugs are being denied us.

Dex fuelled rant over for now.

Every day is a gift.

Andy

 

[andygParticipant]

Hi Potterman.

Looks like your post has been overlooked which is unusual.

I personally haven’t been on VCD though I’ve had several others ie. CDT, PAD, DTpace, Revilimid and Pomalidomide which is my latest treatment. Only Revilimid and Pomalidomide have had a meaningful response for me and have managed to keep my myeloma stable. So I’ve been on treatment, drugs, since diagnosis for over four years now. I even had to stop Zometa due to ONJ (osteonacrosis of the jaw) so I’m pretty much the opposite to your partner.

You don’t give any details about your partner so it’s hard to offer any advice so that maybe why you’ve had no replies. I know my circumstances are entirely different but I just wanted you to know posts are read and questions usually answered.

I hope everything continues to go well for your partner.

Every day is a gift.

Andy

[andygParticipant]

Hi Angela.

It is pointless having vaccinations before a SCT as the high dose chemotherapy will wipe out the vaccine. After the SCT you will be given advice as to when it is appropriate to retake the vaccines including all the childhood ones as well.

I’m not sure if your mums age will have a bearing on the speed of revaccination. I think she will  be prescribed some prophylactic drugs till she has her transplant. As been said no live vaccines should be given.

I don’t think your mums nurse should be in that job because her advice goes against nearly everything I read and learnt in my four years post diagnosis.

I hope everything goes well for your mum a SCT can be tough.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Eve.

Sorry I haven’t replied sooner but I’ve been a little preoccupied the past couple of months.

I’m really glad to read about your travels through England and now France you seem to do all the right things. Since we met on here you have always been a great contributor giving advice and relating your life with Slim including the bad times as well as the great times. You have always been honest and upfront with everything.

It’s just over a year since Slim passed and it must be still raw for you and yet you still find the time to encourage others both here and on Facebook. I greatly appreciate it. I wish you every thing you wish for yourself and hope you keep in touch even if it’s only occasionally.

Lots of love.

Andy xx

PS. Every day is a gift xx

 

[andygParticipant]

Just a little update I ended up in intensive care as I wasn’t over it and they had to sedate me and put me on a ventilator. It was touch and go for a while but hopefully I am really over it now I just have to learn how to walk again.

Every day is a great gift.

Andy x

[andygParticipant]

Hi Helen.

As you say I’ve been proper poorly. I’m now recovering. I had pneumonia and sepsis and I think I sailed a bit too close to the wind. As of now I’ve restarted my pomolidimide and Dex. Though the Dex is only at half strength whilst I try and get walking again.  I feel lucky and okay. I’ve got shakey hands and hardly any strength but most importantly I’m doing okay.

I hope everything is progressing nicely with you.

Every day really is a gift I’m grateful for.

Love Andy xx

 

[andygParticipant]

Good morning Helen.

I’ve had a bad Dex night myself. Had a few other steroids thrown in too for good measure!

We we’re suppose to be going to Greece this coming Weekend unfortunately I’ve been in hospital since Thursday night with pneumonia! Not the ideal preparation for a holiday and definitely not something that should be on any MMers to do list. Fortunately I seem to be getting over the worst of it now and I managed to avoid ITU by the skin of my teeth. Recovery could be long and bumpy I’ve been warned but I guess we’re all used to a bumpy road now.

Hopefully I’ll be fine for or trip to the lakes in October.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi Dusk.

We don’t plan our holidays around my cycles and I don’t stop taking my drugs whilst away. That means I’ve been popping the drugs almost constantly since diagnosis October 2011. That’s a lot of harsh chemicals that have passed through me! I know when POM is no longer effective my options are limited and I will move onto some harsher drugs Bendamustine has been mentioned as a next line of treatment. Still that’s in the future no need to worry about that.

I no longer run. I haven’t ran since late 2009 when the first signs of Myeloma appeared though I wasn’t diagnosed for another 18 months by which time I had lots of damage to my vertebrae. I’m now 3-5 inches shorter than I was depending upon the time of day I’m measured.

When I’m asked how I’m doing I find it hard to answer because I feel good but that good is compared to how I felt on my previous treatment. I gave the same reply when asked when I was on RCD I now know I wasn’t feeling good lol.

Every day is a gift.

Andy

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