[tomParticipant]

Hi Mary

Am pleased Charlie is home and am sure he will stay at home for some time 😎

Its a roller coaster ride getting treatment for MM it has its ups and downs am afraid 🙁 but its as we say Doable 😎
Give my Best to Charlie and wish him well, tell Charlie mine also had its ups and downs but after this lenth of time I (and he will be the same) I forget how bad it was 😀

Love Tom "Onwrds and Upwards" xxx

[StanstanParticipant]

I have just told Charlie what you said and we are looking forward to the good times, as you say, just got to get through the bad. Thankk goodness you are there – an inspiration. 😀
Love charlie & Mary

[VickiParticipant]

Hi Mary

Colin was on revlimid during his induction treatment Mary and he had to do a fragmen (anti blood clot) injection every day for 5 months. Revlimid, with dex and cyclophosphamide brought his pps down to zero and his light chains down to 720. It worked for him. He had a few infections but got through it. Charlie wiill soon be there too.

Like you there were, and are days when I could scream but we've got to be strong to support. Use this forum as a crutch and as I've said before the mm nurses are marvellous. Take care and best to Charlie x

Vicki and Colin x

[StanstanParticipant]

Hi Vicki & Colin

It is so hard to be strong. I sometimes feel that I am crumbling. But – deep breath. Charlie is home from hospital at the moment. I worry more than when he was in. Keeping an eye on him all the time, making sure he does not do too much. Nightmare. I am not sure what he is and is not supposed to be doing. This is all so hard and a new experience that we all do not really want. He is off all treatment at the moment but, it will all start again next week. Upward and On ward as Tom says.

Love Mary x

[tomParticipant]

Hi Mary and Charlie

Hows things? hope your both well, tell Charlie I have just had a week end away with the grandkids and its some thing I didn't think I would be able to do a few years ago 😀

What to do or not to do? well this is for both of you "Dont do too much" it will all save till later when Charlie is tired let him sleep and when Charlie is asleep you try and have a nap Mary, your gonna need your strenth also.

Keep Strong and Keep Well

Love Tom "Onwards and Upwards" xxx

[StanstanParticipant]

Hi Tom

We are fine at the moment as Charlie is not on any medication. We saw the consultant on the Island last week, he says he can treat us here but Southampton want to talk to Charlie to carry on with the trials, so we go there on Tuesday and decide what to do. Sounds like it will be Velcade now. Whatever that means.

It is hard trying to keep Charlie from doing anything, but he knows to take it easy. Thank goodness.
We would love to be somewhere hot, relaxing on the beach.
Hope you enjoyed your weekend away, can't wait until we can too.
Upwards and Onwards. :-S
Love Charlie & Mary

U

[eveParticipant]

Hi Charlie and Mary

Glad to hear Charlie,s at home,not a bad thing to start on Velcade. I think it it is about time they used it as a first line drug,rather than second.
We all know everyone is different with all the drugs ,so I can only speak for Slim,Velcade worked,less side effects plus felt much better in himself,unable to sleep much,but that could have been the combination of drugs.

Worst thing about Velcade was having to have blood taken every time then Velcade dose never changed always 2.3 twice a week not subcut,tried 4 day routine day before for blood then Velcade next day,tried having blood and Velcade same day spent hours in the hospital.
Some hospitals have a better system than our,s,but it drives you mad just waiting around for hours.

Some hospitals actually ,consider the patient and organise themselves,hope you are lucky.As for the Velcade i can only say it worked for Slim and he has had SCT and is in full remission and getting stronger by the day.

Mary leave Stan to do what he feels he can do,just give him a gently reminder,that if he is not careful he will end up in hospital,only thing I would say is do not let him drive,the drugs they are on are not compatible with driving. Eve

[tomParticipant]

Hi Charlie and Mary

Well am Pleased you are both well 😎

Am sure you know that I am now Drug Free 😀 but what I read on here the Velcade sounds like a good one and good for us humans 😎
I am with you re that hot beach and a few Vodka's thrown in also.

Our week end away was great we had a bril time and sent kids home on Sunday Shattered he he.

Keep well and stay strong

Love Tom "Onwards and upwards" xx

[StanstanParticipant]

Hi Vicki & Colin

When Colin had the infections, did he have the emergency antibiotics? They told us, that if Charlie feels unwell just get him to the hospital. Is this what you did?

We see the consultant tomorrow at Southampton to decide which way to go next. He can't have the Thalidomide because of the clots.

Will let you know. Fingers crossed.

Love Mary

[StanstanParticipant]

Hi Tom

Wish we were drug free now. Hope it happens soon. Can't wait.
We see what will happen tomorrow at Southampton, which direction they choose to take with Charlie next.

Upwards and onwards and a few glasses of wine! :-/

Love Mary

[StanstanParticipant]

Hi Eve

Hope Velcade does not have side effects like the previous drugs. Charlie can't have Thalidomide now because of the clots/PE's and we have to decide whether to stay with the trials or have the treatment done on the Island (which would be much easier and less expensive).

Fingers crossed and everything else crosed that it all goes well this time.
Did Slim get any infections when he was on the treatment?

😀 Love Mary

[eveParticipant]

Hi Mary
This thread is getting so long,it will be a record soon,IF you sign in and go to the section you want example General or Carers.Scroll right down to the bottom and you can start another discussion.

Mary Slim had a good few infections you will get use to it,first sign of low blood pressure or temp or just not very well,ring the hospital. Better to be save than sorry . They might decide to reduce the Thalidomide to half does and have blood thinning injections,wait and see what they say,no use worrying about it.I can only say being on the trials,gives you access to the experts in Myeloma .Eve

[StanstanParticipant]

Hi Eve

Sorry, I didn't realise you were supposed to go onto another thread. I shall try that, I did wonder. Nightmare, maybe I shall get it right next time. Thanks. I don't think I am thinking straight at the moment.
Love Mary & Charlie

[tomParticipant]

Hi Mary and Charlie

Am sure the Drug free will come to you two also mine was over two and a half years before I stopped taking them :-/ but well worth the journey 😀

Good luck for tomorrow 😎

Love Tom "Onwards and Upwards" xxxx and the odd glass of Vodka xxx;-)

[VickiParticipant]

Hi mary and Charlie,

Sorry for the late reply…..missed the post. We hope Charlie is doing ok and you are keeping your head above water Mary :-).

Colin had many infections! And we were told when his temp went 37.5 and above we had to phone the hospital and invariably they said come in. Occasionally they let him come home with oral antibiotics, but at least 3 times he was kept I. Hospital with intravenous antibiotics. Once they let him home at 4pm and then at midnight I had to call an ambulance because he had a big temperature spike and he was bak in again! It did settle down though. What I am saying is yes he did have the emergency antibiotics.

Hope your appointment went well 🙂

Vicki and Colin x

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