[andygParticipant]

Hi All,

I’m a bit late to this conversation. Not been on the forum for a few years.
My ONJ started about three or four years ago with a little ulcer on my gum went to my dentist and she prescribed steroids. It didn’t help and the next visit there was bone exposed and she referred me back to my consultant who arranged for the Maxilliofacial team to have a look. They confirmed ONJ and recommended a leave it alone policy with close monitoring and recommended very good oral hygiene. After approximately two years and after two bits of dead bone had dropped out my mouth my gum healed over and I was declared ONJ free with no loss of teeth. I’ve just got a big dent on the inside of my jaw now. Who knew the jawbone is one bone that doesn’t regenerate. Still not back on Zometa or any other bone strengthening drug.
Guess I was lucky because I’ve heard some horror stories about ONJ in the day unit.

Every day is a gift.

Andy xx

• This reply was modified 5 years, 8 months ago by  andyg.

[andygParticipant]

Hi Bikesteve,

I know a lot will have changed since your original post but I thought I’d give you my experience of Panobinostat(Farydak) Velcade and Dex.
I’m now on my last cycle, cycle 16, and have had a reasonable response.
Before I started I had my heart checked over by cardiology, ultrasound and Echocardiogram, and before every cycle I’ve had an ECG and Blood tests. I can’t remember the name of the side effects they were looking for, thanks chemo brain, but I couldn’t have Ondansetron for nausea because of the possibility that it can cause the same problems.
Side effects were mainly nausea, fatigue and of course the usual Dex problems. My Panobinostat was reduced from 20mg to 15mg about halfway through my treatment and that helped with my nausea.
I’m now hoping for a break from chemo before I have to restart treatment. Even a few months would be nice after nearly seven years of constant pill popping.

Every day is a gift.

Andy

[andygParticipant]

Hi Susie

I stopped being a frequent visitor when MyelomaUK did an update, quite a few years ago now, and the result for me made it too frustrating to use. I started to use the Facebook group but now I rarely post on there due to, in my opinion, there being too many replies to some posts that are simply repeating what has already been said or have a totally opposite opinion. Making it hard to sift out the “good” advice.
So being on a Dex night I’d thought I’d pop back here and test out the latest updates

Every day is a gift.

Andy xx

[andygParticipant]

Hi Helen and Mavis.

I’m doing okay thanks.

Helen I’m on a Panobinostat regime at the moment. I was on MUK 8, Ixazomid, but as usual with me it didn’t work. I’m finding Panobinostat, Velcade and Dex a bit challenging but it is keeping me stable at the moment. You can only have 16 cycles of it and unusually the cycles are only 3 weeks long. I’m the first and only one having this treatment at our unit.

Bendamustine is still waiting it’s turn. Hopefully some more friendly options will turn up.

We’re still getting away as much as possible.

I’m sorry your PPs are still rising Mavis hopefully it continues very slowly. Like you I’m grateful to be still here and hopefully we’ll be still around for sometime to come.

I’d like to take this opportunity to wish everyone in the Myeloma family, and I include researchers and MyelomaUK in that,  a very Merry Christmas and a Healthy 2018.

Every day is a gift.

Lots of love.

Andy xx

[andygParticipant]

Hi Helen.

Well I survived our trip to Belgium without having any major problems. Though I had to go straight to the day unit before going home for my regular appointment. Privigen, blood tests and drugs pick up. I’m now on cycle 4 of MUK 8 the best I can say it’s doing is keeping me stable.

Sorry to read that Daratumumab is not working for you. Hopefully they’ll find a suitable trial for you before they resort to Melphalan or Thalidomide. Have you been on Bendamustine yet? They keep saying that could be an option for me.

Hi Maureen.

It was great to see you and Ian the other day. Hope you had a safe journey home. Good luck with your battles with the consultants.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi Susie,

as Jan says there is no hard and fast rules about the level of PPs when to restart or start treatment. PPs are only one factor out of several that are taken into account.

I have read posts were a tiny rise in PPs, as little as 0.2, from 1.5 has caused serious problems and I’ve also read posts of patients having well over a reading of 50 and having no problems. As is often quoted Myeloma is a very individual disease.

Every day is a gift.

Andy xx

 

[andygParticipant]

Hiya Helen

I’m doing ok at moment, just returned from a week in Kefalonia, I’ve just started cycle 3 of MUK 8. Not much movement on the PPs front yet. I’m feeling ok though just got the usual UTI that seems to be a constant companion of mine. Hopefully going to Belgium later in the month.

I’m glad that the Daratumuab is seemingly keeping you stable. It’s what I would settle for with MUK 8.

Hope you have a great time in Cornwall and the weather is kind to you.

Every day is a gift.

Love Andy xx

[andygParticipant]

Hi Stephen.

Are you on Pomalidomide or the MUK 8 trial? On Pomalidomide my PPs came down slowly, I think, over the first few cycles. To about 8. Then gradually rose to the mid teens where they hung about for about eighteen months then began to rise again.

When I as on Revlimid nothing had for the first few cycles then they added Cyclophosphamide to the mix and my PPs came down to approximately 11. I stayed on Revlimid for nearly two years.

I haven’t finished my first cycle of MUK 8 yet so I don’t know how it’s going.

Every day is a gift

Andy

[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

 

[andygParticipant]

Hi all.

Unfortunately when the forum was changed a few years ago it was virtually unusable for quite a few members. Messages wouldn’t post the kept disappearing and there was logging in problems too. These problems took time to resolve and by the time they were resolved an awful lot of members had move on to the Facebook group.

I agree with Louis this forum is now underused which is a shame as the different topic headings are a much easier way to get help than the vastly unorganised Facebook site. Don’t get me wrong the Facebook group is very useful but I’m finding it to busy now and it may even collapse due to its success.

Every day is a gift.

Andy x

 

[andygParticipant]

Hi Paul

Welcome to the Myeloma club. I’m sorry you are joining us as myeloma is such a horrible disease. I hope the biopsy went ok and wasn’t too painful. I’m due one in the New Year.

The first thing you’ll notice is that no two patients have the same journey treatment and outcomes are very much an individual thing. There’s nothing much I can add till you’ve been assessed and put on to your treatment. I hope everything goes well for you.

Every day is a gift.

Andy

[andygParticipant]

Hi Scooby.

I was prescribed tramadol by my GP for my spasms.

Every day is a gift.

Andy

[andygParticipant]

Hi Finn,

I don’t know what is available to me till I see my consultant on Thursday. The discussion with my specialist nurse was just a bit of speculation. I’ve only had a response from two drugs to date, Revlimid and Pomalidomide, nothing else has worked for me.

Hi Jan,

My scalp is healing nicely thanks. Though my thigh where they took the grafts from is still a bit sore. Your dad has been through a lot of operations and it’s great they have been successful.

If I manage to get another cycle in I will of completed three years on Pomalidomide. Will have to see what 2017 has in store for me.

Hi Peter,

I think it’s probably a combination of things that caused my squamous c.c. I’ve been bald since my twenties, played football and ran in all weathers, I’m immunosuppressed due to my myeloma and of course the drugs don’t help.

For me at the moment it’s hats, factor 50 sunscreen and scalpels.

Thanks for the Christmas wishes I hope yours goes well and 2017 is kind to you – to everyone.

Every day is a gift.

Andy x

 

[andygParticipant]

Thanks Rebecca.

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to me including a possible trial MUK8. I’ve got an appointment with my consultant on the 15th Dec so maybe I’ll find out then what I’m going to get off the NHS for Christmas.

I’m hoping my next blood tests show my PPs have dropped a bit so there will be no rush to change treatment just yet. Funnily enough I feel quite good.

Oh I had my 15 mins of fame in our local paper and in the Mirror online.

http://www.gazettelive.co.uk/news/teesside-news/andrew-found-out-incurable-cancer-12244069

Every day is a gift.

Andy xx

 

 

• This reply was modified 7 years, 4 months ago by  andyg.

[andygParticipant]

Hi Susie.

The hospital were I get my myeloma treatment charge £3:00 for 12hours after a 20 min free period. The other hospital I’m frequenting lately is free for blue badge holders which I have.

I get my bloods done at my GPs practice now to save a trip to the hospital and £3:00 lol so now I’m only at the hospital once every 28days. Unless I have a problem. xx

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