[tishwishParticipant]

Hello Megan

Thank you for your reply. Not much improvement yet today, sickness has kicked in now too!!!! Restless night for the pair of us.
How long do they delay the next cycle for.. is it the length of a cycle or start as soon as Peter is well?
The doctor did indicate yesterday that cycle 2 which should start Friday will be held back.
I have had chicken pox as a youngster, i did ask the doctor about me getting shingles, he said No.

Love Trish

[tishwishParticipant]

Hello Pat

Well we have got through the night with nothing more than one minute Peter was freezing cold and the next minute boiling hot as if he was on fire, temp 36.7, so dont know whats going on. Sleepless from 3.30am for both of us.
The doctor yesterday was very reluctant to give any pills of any sort. We are waiting to see if 2nd cycle follows the same pattern. Peter has steroids Fri Sat and Mon Tues so Wed and Thurs are just catch up days for sleep……….Sunday usually is sleep day.
Dont think we will get any PP results on Friday so will be a wait for those.
Peter already has neuropathy from his previous thalidomide treatment, so far it does not appear to be any worse since starting the Velcade.
You take care too

Love Trish xx

[tishwishParticipant]

Brilliant news Peter:-)

Love Trish xx

[tishwishParticipant]

Hi Ozzy

Peter is due to start 2nd cycle on Friday. Doctor was reluctant to give anti biotics and anti virals today. He seemed to want to keep him off the drugs. Peter has had no sied effects during the four injections but the tiredness has kicked in big time this last week. We are back at hospital on Friday and hopefully will see one of our regular doctors and get some more info from them.
Trish xx

[tishwishParticipant]

Hello everyone

Thank you Eve for the advice not to rub the tummy, Peter has only 1 bruise from 1 injection and 3 large red blotches from the other 3 jabs. He has had no 4 today so thats the 1st cycle done. Steroids tomorrow and then 10 days free from those, so hopefully he will be able to get back into a proper sleep pattern.

Love Trish xx

[tishwishParticipant]

Hi John

The claim form has arrived………….10 A4 pages in total!!!!!!!
We have read it and then re read it, not sure we fully understand some of the questions so going to give them a call on Monday. However what we do understand is that the main evidence will be obtained from the consultant and hopefully his info will then confirm lots of other bits of stuff they need to know. Going to call our specialist nurse at the hospital and get her to help us too.
Think jumping through hoops springs to mind……….

Trish xx

[tishwishParticipant]

hello everyone

Peter has now had his 3rd velcade injection in 1st cycle, he also had his zometa yesterday. He is taking the dex slightly different than before, 10 tablets on injection day and 10 tablets next day followed by a break of 3 or 4 days. So far so good, although he is feeling a little tired. The dex days are causing sleeping problems. He is also suffering slightly from indigestion/reflux. he is taking medication for this too. His tummy is slightly bruised from the injections.

Trish xx

[tishwishParticipant]

dear Susannah

I hope you and your family have the best weekend that you could have. Scarborough and Whitby are beautiful places.
Several years ago our local doctor died suddenly and his wife could not bear to take down the cards, her answer was to take one card away each day until they had all been taken down.

Love Trish xx

[tishwishParticipant]

Hello Eve
Can you remeber what the programme was called or which tv channel it was on?
What is the reason you have to inform them for?
Will look through our back post too for said info.Think i will need to inform also cos Peter has SCT too

Love Trish xx

[tishwishParticipant]

Hello
My husband Peter is the one with MM. He was diagnosed May 2011 and had CTD followed by a SCT in 1st December 2011. His pp came down to 6 and stayed there until October 2012 when it started to rise and month on month has continued to rise. A bone marrow biopsy was done and we got final confirmation last Wed that Peter has relapsed. The consultant immeditaly said that a 2nd SCT would not be done, Peter has cells in storage, the reason being that he only got a year remission from the first and all results and reasearch etc show that he would bet even less time from a 2nd SCT. His treatment is Velcade plus dex…..8 cycles in 6 months. We did ask about that cyclophos added to his drug regime and was told no. Peter had his 1st injection last Friday. Slightly sleepness nights since then caused by steroids. Hoping that he may improve as the cycles move on.
Will keep you posted and good luck with yours too

Trish xx

[tishwishParticipant]

Hi Tom

Peter said thank you for your good wishes. Will keep you posted of his journey

Love Trish and Peter

[tishwishParticipant]

Hello everyone

Peter has started the Velcade treatment today…………paperwork signed sealed and delivered. First injection given in the tummy and came home with steroids, anti biotics and allopurinol, 12 tablets taken when we got home. Peter is now sleeping. Back to the hospital on Monday for 2nd injection. We now fully understand the 21 day cycle.

Love Trish xx

[tishwishParticipant]

Hi John

Will post as soon as we have an answer.I have spoken to world First this evening and they are sending me a claim form.
Peter is devastated that he wont be able to travel, we were all booked to visit our son and his wife in Dubai and meet our newly born twin grandchildren who are due in April.

Trish xx

[tishwishParticipant]

Hi John

We are about the start the process of making a claim on our World First insurance. My husband Peter has just been re diagnosed with his Myeloma and treatment has to start immediatly (today)and the consultant will not allow him to travel.

Will keep you posted
Trish

[tishwishParticipant]

Thanks Vicki for updating……i dont mind at all. You have done it better than i would have done.
Indian and wine were very good

Love mum xxx

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