[HelenParticipant]

Dear all
I thought I’d better sign in after a very long gap- lots of reasons starting with an iPad problem logging in to the site and getting posts to ‘stick’
Any way – we have moved house – downsized- and living in a furniture store at the minute while we decide what to keep and what must go!
The holiday cottage has finally been finished for the time being – can’t afford to do the kitchen yet and the garden is a mess – it will have to wait until next year
I have been in hospital twice since June with severe episodes of sepsis- I was very fortunate in that the antibiotics worked quickly and effectively!! I’ve had no long term problems thankfully, though my light chains are on the way up again- it’s another wait and see situation.
We have had 2 trips to Italy- Amalfi coast in April then Venice last week- both lovely but Venice was terribly wet.
I’ve just completed cycle 26 on the Pomalidomide- and the side effects remain fairly stable – peripheral neuropathy in my feet hands and face – the worse is my total lack of sense of smell and an awful sense of taste – food is very disappointing these days but it’s not too bad – I’m doing as much as I can
That’s about it really
Love Helen

[rebeccaRParticipant]

Hi, So great to hear from you at last …phew!… Wow 26 cycles – impressive – beating sepsis twice – wow even more impressive. Despite being dealt an unlucky hand I think lady luck is most certainly on your side and routing for you now. Glad to hear you are still enjoying travels and house moves(?). Keep carrying on carrying on!…oh, and don’t leave it so long next time to pop in!

Best wishes

Rebecca x

[annlynnParticipant]

so lovely to hear your still up and running fighting the fight !! moving house and sepsis .BRAVE were downsizing to so much stuff ive just had 5days hospital to calcium to high blood to low home and sorted started 2line treatment yesterday VCD cause the beasts raising its head again . never mind lets get back on the. us xxxx annlynne best wishesto all goodluck helen

[andygParticipant]

Hi Helen

It’s good to hear from you again. Glad you managed your trips to Italy. Sorry to hear about your troubles with sepsis I also had a recent week long stay in hospital due to sepsis and had all sorts of antibiotics pumped into me which obviously did the job.

Can’t remember if I told you about my scalp problems at the InfoDay, bloody chemo brain, anyway I’ve been diagnosed with Squamous Cell Carcinoma! Needed a second operation and skin grafts which I had twelve days ago. My head looked like Frankenstein’s monsters head with over 30 staples and loads of stitches.

I’m currently on cycle 37 of Pomalidomide not sure how much longer I will get out of it as my PPs are creeping up though so far my other bloods are behaving themselves. Seems we are at a very similar stage in our treatments.

Every day is a gift

Love Andy xx

[janwParticipant]

Hi Helen,
It’s so good to hear from you and read that your myeloma is still under control with your current drug regime. Long may this continue. With yours and Andy’s good experiences of pomalidomide, I was really pleased to learn the drug has now been approved by NICE. It seemed so unfair that it was available in Wales and Scotland but not England. You have certainly been busy with moving house and doing up the holiday accommodation. Our loft is still full of many boxes of various items which we moved with us over twenty years ago and have never got around to sorting them out. My mom found that a daily zinc supplement helped her occasionally regain some of her sense of smell and taste which she lost for over ten years following a cold virus, but be careful you don’t overdose on the recommended daily amount.

I resumed treatment in the autumn of 2015 when my light chains reached 1900. After completing 8 cycles of VCD followed by my second sct in September, my light chains are now 44 rising slightly to 54 this month which is a great improvement and similar to the reduced levels which I achieved following my first sct in 2010. Hopefully they will only rise slowly over the coming years. I just need to regain my energy levels which took a good 12 to 18 months after my first sct. It’s no fun trying to do all of my Christmas present and grocery shopping online.

Take care. Love Jan x

[HelenParticipant]

Hi Rebecca Ann Andy and Jan
Hope this post finds you all in a tolerable state -and thank you for your supportive replies to which I am only getting round to replying! Very rude of me.
I’m still living in a furniture store but it is gradually getting sorted and a lot of stuff is heading for the auction room!

I’m on cycle 30 of the Pomalidomide but next week I’m going to see about the Daratumumab trial as my light chains continue to rise relentlessly. Keep,the fingers crossed that this is an option- they did say that there wasn’t much left in the cupboard!

However I’m now at 6 years and a week since diagnosis- much longer than predicted a few years ago when there wasn’t a donor to be found and the cytogenetics changed.

So, what else, we go to Amsterdam in 4 weeks, and are planning my mums 90th birthday party! Lots of weeks away booked for various weddings and birthdays- just hope I can go on them all – as I say – fingers crossed!

Love Helen

[susieParticipant]

Hi Jan

Sorry to butt in here, I noticed you said Pomalidomide has now been approved by Nice. I thought they had taken it off the CDF and was only available on a trial. Can you tell me what their recommendations on it are ?

Thanks and best wishes

susie

[janwParticipant]

Hi Susie

If you have a look at the Myeloma News section on this site, there’s an article released on the 23 November 2015 stating Imnovid (Pomalidomide) is now available for myeloma patients in England who have received at least three prior treatments including Velcade and Revlimid, and whose myeloma progressed while taking their last treatment.

Regards Jan

[susieParticipant]

Hi Jan

Thanks for that. I must have missed it. I’ll have a look. It’s good to know its there.

susie

[bandityogaParticipant]

Hi Helen

Sorry to hear that your FLC are continuing to rise and I hope you get on the daratumumbab trial. Ian is in the same boat as pomalidomide has stopped working after 4 cycles and the consultant wants him to go on farydak, velcade and dex. We are going to speak to a specialist in Glasgow to speak about any other options but he has gone through most of them very quickly. We were told that it would be unlikely for Ian to have another SCT so we too are coming to the end of treatments with no trials in Scotland yet and the SMC has declined the use of daratumumbab and carflizob (hope that’s how you spell it). Not ready to give up yet. We have a trip to London in March to see my daughter and going to see 42nd Street and eat in The Ivy (our Christmas present from my daughter). Trying to live from day to day but it is very very hard.

Enjoy your visit to Amsterdam, we haven’t been there but would like to see it. Your mum is doing great reaching 90, enjoy all the celebrations and know that I am thinking of you too.

Maureen x

[cartdawParticipant]

Hy all it’s good to see familiar names I have not posted either for a while. Had a stem cell in sept 2015  and still in remission all bloods are normal. Occasional chest infections but nothing major touchwood. I am on revlimid 5mg have got occasional neuropathy in my feet and dry skin . As Andy says every day is a gift and I am very grateful. Xxx Dawn

[HelenParticipant]

Hi Maureen
I’m sorry to hear what you say about Ian’s treatment options- it’s not easy to deal with- when you know that the drugs are out there – NICE have said no to Carfilzomib too and Daratumumab isn’t through yet either. Have they suggested Bendamustine for Ian? It’s my next one if things don’t pan out with the Daratumumab trial.
I was lucky to get a place on it as it has reached its target numbers. I start it on 28th March- hopefully it will work but it’s only successful in 30% of patients so we will have to see- meanwhile I’m on cycle 31 of Pomalidomide in the hopes that the light chains can be kept in check until the last minute.
I’m looking forward to our little trip to Amsterdam on Friday and you have some very exciting things planned for your London holiday- I hadn’t thought about going to dine at The Ivy – if my sense of taste comes back I will have to think about it!!
Love Helen
Hi Dawn
I’m really pleased to see that you are going strong still on the revlimid- do as much as you can with the remission and enjoy it as much as you possibly can- I think it really helps keep you positive and distracted from the bad stuff if you’ve got nice things in the planning stage – all the time! I lurch from month to month- not booking anything until the last minute but I enjoy the plans – it’s a different way of living but a pretty good quality of life at the minute.
Hope all continues to be well
Love Helen

[bandityogaParticipant]

Hi Helen

We went to see a specialist at The Beatson, Glasgow and he suggested that Ian start farydak, velcade and dex and if he gets into remission to collect stem cells. He will then get 3-4 days of radiation and then get his stem cells back. Ian is now finishing cycle 1, 2 weeks on and 1 week off which fits in with our trip to London. He also suggested mephalan and ninlaro on compassionate grounds so we feel better that there are more treatments available. He hasn’t had too many side effects on this new treatment. The usual dex as he has 20mg, 4 days a week and his bowels are a bit loose but I pray that this works. The trial for daratumumbab has closed in Scotland so there are no trials at present.

I hope you enjoyed your trip to Amsterdam and also the celebrations for your mum’s 90th birthday. I hope that daratumumbab works for you and you get into remission.

We try to take one day at a time and enjoy life. I wish the weather was a bit warmer to get out into the garden but it is getting colder.

Let me know how you get on with the trial.

Love Maureen

[andygParticipant]

Hi Helen, Maureen,

Glad to hear  from you. I too are at the end of my Pomalidomide journey. I managed 40 cycles before it was stopped. Bendamustine or a trial was mentioned as my only options. Two trials were mentioned MUK5 and MUK8 unfortunately MUK5 had reached its target number of trialists, I think that was the one you’re on Helen, but I managed to get on to the new drug arm of MUK8, Ixazomib(Ninlaro) , Cyclophosphamide and Dex.

As usual things haven’t gone smoothly. First of all I needed to be 30 days free from Pomalidomide which meant I was able to start it the 16th of March but unfortunately I had an infection a week or so ago and was given ciprofloxacin which is on the trial banned list so I couldn’t start the trial till I was 14 days free of that! That pushed the start date back till 30th March which happens to be when we’re away in the Lakes so the start date has been push back again and I’m now due to start till the 6th of April. So fingers crossed I’ll be healthy enough to start then. The upside is I’ve been treatment free for the first time since diagnosis October 2011.

I’ll update you when/if I get started on the trial. I hope the Daraumumab trial works out for you Helen and I hope Farydak works for Ian Maureen. It seems we three are in similar positions as options are running out for NHS funded drugs.

Good luck.

Every day is a gift.

Love Andy xx

 

[HelenParticipant]

Hi Maureen and Andy
I’m just finishing cycle 31 of the Pomalidomide and start the Daratumumab next Tuesday- just hope it works – fingers and toes all crossed!!
Hope Ian does well on his next regimen and Andy – the same applies to you too.
Our trip to Amsterdam was very nice though it rained a lot, the next jaunt is to Keswick at the end of April as mums birthday present.
Love Helen

• This reply was modified 7 years, 7 months ago by  Helen.

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