[tomParticipant]

Hi Mary and Charlie

Please stay positive as I know from myself its the only way to be.
I hope its all soon sorted and soon on the road to remission

Lots of Love Tom "Onwards and Upwards" xxx

[MicheleParticipant]

When I first started CTD I gave myself a Clexane injection every day due to the risk of clots when taking thalidomide.
After one cycle it was apparent that Clexane wasn't for me. It caused terrible bruising, red patches AND chest pains.
I was then on aspirin for the next 5 cycles which was fine.

I really hope the hospital can fix Charle's problem quickly.
Keep in touch.

Michele x

[docmikeParticipant]

hi mary
Have you contacted the doctor in southampton to get his/her opinion ?if not I think it would be a good idea to help sort out the medication he requires .
mike

[StanstanParticipant]

Hi Mike

They have just started talking to eachothe,the consultant in Southampton and the consultant at St Mary's on the Island. They are thinking about Revlamid instead of Thalidomide. There is an option of 3 or 5 week cycles. They are not sure why Charlie collapsed twice and are checking his heart. They feel the Thalidomide may have caused the PE's but as they can only find 2 little ones, are perplexed. This is trauma, I wish it was all sorted out.
Deep breath – I think he is going to be in hospital for ever. He is so normal now he is off all the pills at the moment, it is like having the old Charlie back but I know it will not last.

Love Mary

[StanstanParticipant]

Thanks Michele

They are now talking about Revamid instead of Thalidomide, apparently it was too uch Thalidomide – 150 and this has caused the PE's. It is all so confusing. Charlie has been off all the drugs for a week now and it is wonderful, he is back to normal. I know it is all going to start again, they are talking about either 3 or 5 week cycles. They just can't find out why he collapsed and had to be resucitated – they don't think it was his heart but are doing tests to see.

As Tom says – Upwards & Onwards and many deep breaths.

Love Mary :-S

[docmikeParticipant]

hi mary .
I think that is a step in the right direction but understand your frustration.
mike

[StanstanParticipant]

Hi Mike

They have now decided that it is an irregular heartbeat, not an embolism that has caused all this. Nightmare! The cardiologist is going to check this out, maybe in hospital but maybe as an outpatient. What do I do if it happens again at home? Will he be able to stay on the trials?

I am so confused.

Love Mary

[StanstanParticipant]

Hi Mike

What is Velcade? They are thinking of that now. Isn't it all so confusing?

Love Mary

[StanstanParticipant]

Hi Tom

Roll on remission!!!! Upwards & Onwards. :-/

Love Mary

[Pickle2024Participant]

Hi Mary,

My dad had been on CTD for 6 months and had blood clots in both his legs quite early on which they said was caused by the Thalidomide. He now has fragmin injections in his tummy every night, then a couple of weeks ago he had chest pains too and we took him to hospital to get checked. The ECG showed an abnormally fast heart beat called atrial fibrillation. He was given som heart pills and it seemed to slow it down. We saw the consultant yesterday and hes been taken off all chemo the allow his body to recover. I know how you feel as it seems like one thing after another. dad now has a chest infection and on strong antibiotics. we were told dad will stay on the trials all the way through as this is how they monitor the results of the drugs so I assume you will too. I hope you get sorted soon

Nicola xx

[StanstanParticipant]

Hi Nicola

Did the treatment cause the atrial fibrillation or was it there before?
They say we are staying on trials but I do not want to do so if the drugs are going to have such a dreadful affect that he dies sooner. I really don't know what to think at the moment. Charlie has been off the drugs now for 2 weeks, since he has been in hospital after collapsing and he is back to normal. The Charlie I know. It is so hard to deal with. Strength – Upwards & Onwards I hope.

Love Mary

[Pickle2024Participant]

Hi Mary,

The consultant said it could have been caused by the chemo as it wasn't there before but apparently it is quite common and the chances of it happening increases with age. Dad is 73 so I guess we'll never know. I think even if you are on the trials the health of the patient is always priority so if Charlie is unwell I'm sure they will give him long enough to recover or change the treatment. Dad was so weak yesterday he could only just stand up, let alone walk. He's had every side effect going and has got gradually worse as the treatment has gone on. Luckily his levels have gone done quite a bit so hopefully all is well. He only stopped the drugs yesterday so we don't know how he will be once they are out of his system. Was Charlie really weak before he stopped them? I hate them too and just want my "old" dad back :-(. Nasty treatment but no other options…..stick with it as everyone says there is a light at the end of the tunnel, it just seems a long way off at the moment

Nicola xx

[docmikeParticipant]

hi mary
Bortezomib .a relative new agent that is likely to become a first line therapy in combination with another drug ( ?lenalidomide ) and it is a back up therapy in the x1 trials (i think?) . Given by intravenous infusion but now can be given by subcutaneous injections , does not cause venous thrombosis unlike thalidomide or lenalidomide > you need to look it up on this website for more info.
A lot to take in I know, so take it step by step . remember all the drugs have side effects but not everyone gets them.
Mike

[tomParticipant]

Hi Mary well it is an Uphill struggle 🙁 but it will be worth it am sure, they will find out why and sort that out so as you also say Onwards and Upwards, Stay strong and stay focused.

Good Luck on the road to remission.
Love Tom "Onwards and Upwards" xxxx

[StanstanParticipant]

Thanks os much Tom.
Charlie is out of hospital now, I just hope he stays here for a while. We are so trying but it is so hard but Upwards & Onwards.
Just need to be like you.

Love Mary x

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