[joeoParticipant]

Hi All

Just wanted to check if anyone on the forum has had any experience with pomalidomide? My Dad has been fighting this disease for 3.5 years, once this treatment is commenced it will be the 5th line and final one. We had a lengthy discussion with his consultant yesterday and if this fails he will in his words, ‘have weeks to months to live’. In addition to this there is only a 30% chance of this treatment working.

I guess the reason I’m writing this is for hope! Hope that someone has experienced been apart of that 30%.

Hope everyone is doing well in your own battles

Joe

[joeoParticipant]

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[MikejanulewiczParticipant]

Hi Joe,

I’ve had a lot of time on my hands with this Covid restrictions!!!
I’m sorry I haven’t seen your post earlier.

How are things going with your Dad??

I’m 57, had myeloma since 50, and am on pomolidamide. The docs have been pretty blunt about this being the final drug. But they did say they would try previous drugs I’ve had.
And also I believe NICE are meeting in November to talk about a new drug that works via a totally different mechanism, this will be for the likes of us!
And there are always the possibility of trials. ( but nothing at moment)

My loved ones are aware of the situation.

On the positive side—- I am pretty well on the pomolidamide, just a bit tired and constipated ( normal side effects) and muscle pains ( unusual side effect but manageable as no option!!) , the pomolidamide is working well keeping my paraproteins down and I’m now at nine months on it (statistal mean 5months).

I hope that helps. I wish your dad (and family) all the best and fingers crossed.

Mike

[MikejanulewiczParticipant]

Hi Joe,

I’ve had a lot of time on my hands with this Covid restrictions!!!
I’m sorry I haven’t seen your post earlier.

How are things going with your Dad??

I’m 57, had myeloma since 50, and am on pomolidamide. The docs have been pretty blunt about this being the final drug. But they did say they would try previous drugs I’ve had.
And also I believe NICE are meeting in November to talk about a new drug that works via a totally different mechanism, this will be for the likes of us!
And there are always the possibility of trials. ( but nothing at moment)

My loved ones are aware of the situation.

On the positive side—- I am pretty well on the pomolidamide

[joeoParticipant]

Hi Mike

Sorry for the late reply, things have been a little hectic over the past week or so. We had some bad news Wednesday that my Dads myeloma was on the March again and the Pom wasn’t doing what we hoped. His paraprotein has gone from 3 to 12 in the space of 2 weeks. They don’t have many options left, other than another tablet to help slow the rise. However they don’t seem hopeful.

Also last night he was rushed back in with suspected sepsis. However his blood results are the best they’ve been for months! Very confusing!

I really hope you are coping in the current situation and pray you keep fighting your battles. Also thank you very much for taking the time to reply it really is appreciated

Take care and stay safe
Joe

[MikejanulewiczParticipant]

Hi Joe

I’m so glad you got my message.

How’s your Dad doing? Hope he is out of hospital, home really is the best place to be, no doubt about it. Also re all this isolation, I would think that your dad having such a tough time, you can bend the rules!!! I am being strict and only for another 8 weeks. But— if my paraproteins go up again and I have to stop the pom, then I’m going to stop this shielding.

Does your dad talk to you about what he wants for when the time comes to stop treatment/ final months???? I’ve been able to talk that through with my wife but not been able to yet to talk it through with my son and daughter (30 and 28)

Keep strong Joe.

Mike.

[joeoParticipant]

He’s not doing well. Unfortunately it appears the infection and myeloma have become too strong. He has been given a week to live, his kidneys have also failed.

We have been allowed to come see him in hospital and spend as much time as we can with him. He will be coming home today and we will go from there.

My Dad is very much the same, he does however open up to me every now and again. He’s told my mum his heart isn’t ready to go but know his body is. He’s an extremely proud man and doesn’t want to show any fear to his children. When leaving the hospital last night we said goodbye and he just held my hand for what seemed like forever and just told me he loved me.

I’m 28 and yes it is difficult to hear or see your dad is struggling but your
Kids will appreciate your honesty and you will become even closer. Tell your children to appreciate every single second .

Keep positive and you will get through this!

All the best Mike I truly hope and pray that the Pom works for you and you get to live your life to the fullest.

Joe

[MikejanulewiczParticipant]

Hi Joe

I’m so sorry that your Dad isn’t doing well.

He will be looking forward to going home very much, I’m sure. Also the NHS are fantastic at the care required in the last few weeks/days.
Just make sure you ask for help. Usually the GP or Macmillan nurse coordinates any help wanted/ required. And shout if you need more help from them.

I hope your journey is as smooth as possible.
Should you wish to text/talk to me, I’d be more than happy to. My number is 07852768027.

Kind regards

Mike.

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