[tishwishParticipant]

Thank you everyone for your replies. Dai and Eva I hope the the Revlimid works for you. I hope the the PN eases. Peter has a little PN but suffers badly from cramp in his feet when he is in bed. He also has a severe pain on the top of his foot, this is usually triggered from sitting in the car. It is very painful when he has to get out and start to walk. Peter's bug has got worse and we had to have the GP today. This was after discussion with the hospital and they understandably decided that although they thought that Peter needed to be in hospital, they did not want the bug in the hospital. GP came and did thorough examination and decided that apart from the bug he was ok. Got to increase the fluid intake and take a different anti sickness tablet.
Hoping that he soon turns a corner

Love Trish xx

[tishwishParticipant]

Hello Dai.

Thank you for your reply. This was stand alone treatment. Peter had SCT in Dec 2011 but then fell into relapse in January of this year, so only a short term result from that treatment. The consultant said that a 2nd SCT is out of the question because Peter only got a small "remission" period from the 1st. Peter has stem cells in storage but they are now useless to him or anyone else apparently.
It was said at the beginning of his Velcade treatment that they might run more cycles of Velcade and funding was sought for this, this now does not seem to be going to happen and the doc said that the cycle 8 was the last cycle in this treatment run. Peter is exhausted at the moment and he needs to gain some strength before whatever comes next is to start.
We have a list of questions for the next appt. Our daughter Vicki,always comes with us to the important meetings with the doc, she is an industrial chemist and is used to standing up doing presentations etc so a doctor does not phase her at all until she gets the answers we all need. We do believe that Revlimid will be the next treatment.
I got the impression from the doc that he knew the treatment had not worked brilliantly but was waiting till cycle 8 was done and the results were in. Think the docs course of action will be to watch and wait n see how the little "buggers" grow again and Peter's PP's rise.

Love Trish

[tishwishParticipant]

Hello Eve
Thank you for your reply. Peter was diagnosed 31st May 2011 after 5 months of horrendous pain in his back etc…………!!! He was in hospital for a verboplasty when he became extremely ill with hypercalceamia and we were given the Myeloma bombshell. CDT treatment was given followed by SCT in Nov 2011. Sadly Peter relapsed only 13 months later in Feb 2013 and that was when they put him onto Velcade. I will look at the trials info but I don't think we are at a hospital that is taking part in trials. We gleaned this info from our specialist nurse. Revilimid could be his next option then.I suppose we just have to trust the specialists advice.

Love Trish xx

[tishwishParticipant]

Hello Eve and Tom

Yes the doctor told us about the steroids masking infections etc, we had no idea about that. The ambulance situation was very stressful, we were told it would be up to 2 hours wait…..well it was 3 hours and then it was a crew who came from out of our area. Eve, we are going to ask about a BMB to try and get a more definite result. We also need to ask if Peter ends this course of Velcade treatment could he go back on at a later stage. Do you know what the next treatment would be. We have been told that the Government funded treatment is ending, not sure what is meant by that though. We think it is possibly that the funds are to be cut…..
Will let you know when we know more

Trish x

[tishwishParticipant]

Hi everyone.

I got email from Sara today and we are doing our interview on Wednesday.
🙂

Trish and Peter x

[tishwishParticipant]

Hello Ellen.

I have passed on my husbands details by email to Sara but have not heard anything back from her.

trish xx

[tishwishParticipant]

Hi John

That's good news for Cecilia. Yes Peter has his Velcade subcut too. been today and started cycle 6 and also had his dose of Zometa too. We are looking forward to getting to the end of the course and hoping for a goow result and then be able to have a bit of time hospital free. At the moment our lives revolve around organising our business and hospital dates.

Trish xxxx

[tishwishParticipant]

Hello Megan

Thank you for your reply, Peter is recovering very well after his operation. He has no pain and his wounds have healed very well. He is in a very good place at the moment, but suppose that will change over the next few weeks when the chemo and dex start doing their worst again. However we have exciting times ahead. Our son and daughter in law are bringing their 3 month old twin boys home to England for a visit to see their extended families. I made the trip to Dubai in May to see them at 4 weeks old. Peter unfortunately was not allowed to travel and meet them. One week tomorrow night we shall be meeting them at Manchester airport. I cannot wait to see Peter's face when he finally gets to give them a big cuddle and kiss xxxxxxx

Trish

[tishwishParticipant]

Hello everyone

Finally the deed is done and Peter has had surgery for the hernia and also slight damage to the bowel has been repaired. He has been pumped full of antibiotics and painkillers. The surgeon was pleased with Peter and allowed him to come home the next day. He is feeling rather sore and very bruised. Rest and recuperation is now the order of the day and following weeks and he will be well to meet the twin boys when they make their first long journey home to England to meet granddad on Aug 9yj.
We expect cycle 6 of Velcade plus dex to sart again on 2nd Aug.

Love Trish xx

[tishwishParticipant]

hello everyone

Peter saw the hernia consultant yesterday and surgery is booked for this Thursday. Peter was in the most undescribable pain yesterday and when he saw the consultant who proceeded to examine him, he was screaming in agony. The doc was very good but said he had to do this to find out what seemed to be wrong. Immediatly he telephoned his secretary to get Peter onto his next surgery list. Booked in, bloods and swabys done all withing 20 mins. Doc was very concerned about the amount of pain peter has, its rather unusual for a hernia!!!!
Keyhole surgery with full aneasthetic unless they find that they have to do open surgery.
Roll on Thursday it cant come soon enough

Love Trish xx

[tishwishParticipant]

I also shared on facebook

Trish x

[tishwishParticipant]

Hi Dawn

My husband has MM and we used world First Insurance, sadly we had to make a claim on said insurance as Peter relapsed and the consultant stopped Peter from travelling as he had to start new treatment immediately. We were travelling to Dubai to visit or son and his wife and their newly born twin sons.
We are still trying to get a refund on Peter's plane ticket, the problem is with the flight company, Emirates. They are refusing to issue a cancellation invoice to us. Their policy states that they will keep the ticket open for a year for Peter to travel, they will not transfer said ticket to myself. World First have refused to help us, although they do tell us that if and when we get the cancellation invoice they will more than likely pay out.
The saga rolls on and on……………

Trish x

[tishwishParticipant]

Hello David and Eve

We seem to be stuck between a rock and a hard place……A and E doctor was going to give Morphine but then down graded it to Tramadol with the proviso that Peter only takes it as and when he needs it!!!
Our own GP has passed Peter over to the hospital for his hernia care, so not much joy there.
Hoping that the hernia consultant will prescribe something stronger on Monday.
Trish xx

[tishwishParticipant]

Hello Eve

Thank you Eve, Peter is expecting to have open surgery, the hernia is extremely large. He is in tremendous pain and has been given tramadol……doesn't really help much. We are hoping it is done asap.

Trish xx

[tishwishParticipant]

Hello

The decision was made today by the haematologist to suspend Peter's chemotherapy to allow the hernia operation to go ahead. We are meeting the surgeon on Monday and are hoping for a date for the surgery which we are hoping will definitely be within the next 2 to 3 weeks maximum. The problem with surgery is not with the chemo but the steroids. It causes the skin to have very slow healing properties. Chemotherapy will start again as soon as 2 or 3 weeks after surgery.

Trish

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