[adamsp41Participant]

Hi Charlie.and Mary…just dropped in on this thread…and really hope all goes well in the future for you both …I am sure Charlie will come sailing through..everyone on here will think the same as we have all been through a rough journey…me personally ?…very similar to Charlie and am now 21 months post SCT and am now in stringent complete remission ( lovely word that)and on the X1 trial… and…on sat morning the wife and I did guess what…yep you got it… put a new felt on our shed (photo's available free of charge :-)) …stay safe and take it one day at a time…Phil

[eveParticipant]

Hi Mary

Well everyone is saying the same you will get over this hurdle,as for felting the garden shedddddddddddd,he is going to have to slow down a bit.:-P

Mary I never take pills,but at one stage I found my self tearing a piece of a complete stranger,so that little white pill keeps my emotions under control,nothing worst than crying or behaving like a mad woman,when thing use to get me down just took them for a few days at a time,doctor said thats not how they work,but it worked for me. psychological I know.:-S

You will find an inner strength,and as time goes on knowledge will become you ally ,so things will not seem so frightening. Love Eve

[StanstanParticipant]

Thanks Eve. The inner strength seems to be evading me at the moment. I feel that I am going to burst. Maybe I shall try a pill tonight and see what happens. The doctor gave me 5 boxes and like you I am so not into pills but this is a new experience isn't it?
As Tom says, Upwards & Onwards – hopefully.

Love Mary

[StanstanParticipant]

HI Phil

Can't wait for post SCT. Charlie was re-roofing the shed the night before he collapsed, maybe he was overdoing it. Thanks for the hope Phil.

Fingers crossed.

Love Mary

[tomParticipant]

Hi Mary and Charlie

I am sorry to see you are both having a rough time, and I hope nay am sure they will soon have it all sorted, trouble with this darned MM not one treatment fits all, so once they find what Chrlie fits it will all fall into place.

Now as for the roof lark oh gi ower Charlie save your strenth and energy for fighting the MM at the moment am sure the roof will wait, save your energy you two and use it to fight the pitfalls of getting into remission.

Not be long until you are "Onwards and Upwards"

Love Tom "Onwards and Upwards" xxx

[StanstanParticipant]

Hi Tom

Where do you get your positivity from? Can you pass some over?
They said today at the hospital that it was a pulmonary embolism and have put him on Warfarin for the rest of his life. I don't know what that does for the rest of it. Just keeping my fingers crossed and deep breathing.
So wish we were post SCT – how does everyone manage? There must be a hidden strength. They have sent him to another ward now until he sees the cardiologist and learns to inject the Warfarin. Nightmare!!
But – Upwards and Onwards – hopefully. Thanks Tom.
Love Mary

[docmikeParticipant]

Dear Mary/
The pulmonary embolism (PE) is a complication of therapy due it causing a deep venous thrombosis .It is a well recognised complication for which aspirin ,heparin injections or even warfarin can be given to prevent the above . So warfarin should not complicate further treatment altho it may require some adjustments of certain therapies.
Heparin is given by injection for about ten days in PE as well warfarin which is given by tablet not by injection .
I hope all goes well.
mike

[StanstanParticipant]

Thanks Mike
We have learnt more from you than the hospital. The cardiac technician has just put him on a 24 hour monitor. See what happens next. Thanks for informing us, it is good to know what is happening. He knew they were giving him injections & tablets but not what they were.

Love Mary:-)

[tomParticipant]

Hi Mary and Charlie

Where do I get my positivity from?? well I get it from this forum yep this forum every one drops a bit of it when the post good news and I just go along and pick that little bit up and my Young Bride (Elaine) knits it all together for me and that way I have loads and if you look I have dropped a little bit for you all ((***)) just pick it up and save it 😀

And it wont be long before those little bits of positivity will be left after your posts, and i will pick those ones up also 😎

All will fall into place but it will take time am afraid with the ups and downs of MM :-S

Stay strong and dont forget pick those iccle bits of positivity up as you go along.

Love and Hugs

Tom "Onwards and Upwards" xxx

[StanstanParticipant]

Hi Mike

They have decided not to give him Warfarin now but increase the Clexane dose. Is this good. Will the PE disperse as he is still having pains in the back? It is so dreadful not knowing what is best.
Love Mary:-S

[docmikeParticipant]

Dear Mary,
Both heparin and warfarin prevent further clots forming ;the clots usually dissolve themselves ( thrombolytic therapy To dissolve clots is only given in special circumstances .)Did he have a ct scan to confirm the diagnosis ? The doctor in Southampton may have an opinion on warfarin in regards to his myeloma therapy . Heparin can be given in the short term but warfarin is given in the longer term to prevent venous thrombosis . Hope this helps
Mike

[StanstanParticipant]

Hi Mike
Thanks so much for replying. Charlie came home from hospital for one day, the next morning, he was having chest pains and I rushed him back in. They say the Thalidimide caused the PE but now he has something wrong with his pleuritic sacs. They have stopped the Thalidimide and are just giving him pain killers for the chest. Don't know what will happen now or even if he can stay on the Myeloma XI trials.

Thanks for keeping me informed, the hospital says nothing, specially at weekends.

Love Mary

[StanstanParticipant]

Hi Tom.

Trying to become incredibly positive but it is not working at the moment.

Charlie came home from hospital for one day, the next morning, he was having chest pains and I rushed him back in. They say the Thalidimide caused the PE but now he has something wrong with his pleuritic sacs. They have stopped the Thalidimide and are just giving him pain killers for the chest. Don't know what will happen now or even if he can stay on the Myeloma XI trials.

Deep breath and see what happens.

Upwards and Onwards.

Love Mary

[VickiParticipant]

Mary

Just picked up in the thread. You and Charlie are having a really rough time! Gosh there has been some eventful situations for you both to say the least…..no more shed roofing for either of you 🙂

I can't offer any help with the blood clot but I can offer you my experience about stress in supporting my partner. There were days when I could cry and cry. They still exist now, but I am always trying to pick up a positive, either from everyday life or as Tom says, from this forum. I also try to read around the subject too to get as much understanding as I can. Also it's important to talk about how you are feeling to. Have you tried Macmillan nurses, they are great. And the nurses on this site are so so helpful, understanding and knowledgeable. I keep getting told to look after myself too,rest and eat well as if I get unwell Colin won't have my support :-(, sometimes easier said than done, but it is true.

If there are any questions I can help with please ask. It's a long road but as Tom would say shoulder down and charge at this damn condition. It will be beaten,

Take care

Vicki and Colin x

[eveParticipant]

Hi Mary

Slim had Claxane injections for 8 months and Thalidimide was reduced by half,he remained on the Trials ,It is a complication of the Meds,and did result in damage to his lungs,but still had SCT.

Eve

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