Well here we go again, Peter has got the chicken pox type spots/rash again. he has just finished cycle 2 and yesterday, same day as before, the spots appeared. Hospital informed and the doctor has said that unless Peter becomes unwell then we are not to go to hospital until next Friday, cycle 3 is due to start same day.We are now becoming…[Read more]

Sorry to hear about the relapse, i know how you will be feeling, my husband Peter has recently relapsed. Peter only got about 11 months remission from his SCT and on that basis doctor said that 2nd SCT was notmviable. Therefore Peter's treatment is Velcade. Good luck with your journey together.

Love Trish xx

Sorry to hear that you too are a relapsed patient. Wishing you well on your Velcade journey. Peter has started cycle 2 today after been of it for 3 weeks due to suspected chicken pox (blood test show it to be a no but even the doctor today, 4th different doctor, still feels it was chicken pox !!! Chest infection, cough and a virus.…[Read more]

The insurance claim rolls on and on. Had several letters from the insurance underwriters asking for more information, all sought out and given. The main stumbling block seems to be that the airline tickets we purchased were non refundable………….so the airline wont refund. Well thats ok because we are claiming on our travel…[Read more]

Specialist nurse rang this morning to tell Peter that he has no antibodies to chicken pox so that confirms that Peter's spots are not chicken pox or shingles. Nurse stated that Peter must avoid chicken pox at all costs now as he is going through the Velcade treatment.

Doctor's appt for 5th April to discuss further and hopefully restart…[Read more]

Well the chicken pox saga rolls on……Peter has been to hospital this morning and we have seen a different doctor who beleives that Peter does not have Chicken Pox, however he said that the spots are very like them. He thinks it could be a reaction to some of the drugs Peter is taking or even the Velcade. A blood test was taken…[Read more]

Doctor confirmed this morning that if you have had chicken pox previously you can then get shingles. Hope Henry misses them.

Love Trish xx

Well the claim forms have been completed and photocopied and posted off….so we await the next stage.

The hospital doctor was fantastic with the info he had to give also writing an additional A4 page of added extras, he said that he was often asked for extra info so decided that he would send it straight away.
Only problem we had was…[Read more]

My husband had his stems collected on 26th October 2011 and he was given them back on 1st December 2011. Peter came out of hospital on 20th Dec.

Good luck
Love Trish xx

Peter has some neuropathy from his thalidomide treatment, the doctor is keeping close eye on whether it gets worse on Velcade, so far we have had no probs.
Chicken Pox and chest infection and a virus is now the order of the day so Peter is feeling very poorly.

Love Trish xx

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…[Read more]

What more can life throw at us………….After 2 very unsettled days and 2 afternoons spent at the hospital Peter has today been diagnosed with chicken pox and a very nasty virus. He is quite poorly. Anti biotics and anti virals given, bed and rest the order of the day and a visit back to hospital on Friday.
The doctor said that he…[Read more]

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…[Read more]

Love Trish xx

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…[Read more]

Peter has had a few wobbly days, he had the 4th velcade injection a week ago today and since then he has been extremely tired and had no energy at all. He has slept a lot during the day time. He has now developed a chesty cough and got spots on his back. An emergency visit to hospital today confirmed something wrong with his chest but doctor…[Read more]

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

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…[Read more]

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.…[Read more]

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

Love Trish xx

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

Love Trish and Peter

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…[Read more]

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

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

Love mum xxx

My husband Peter uses a TENS machine and he has had good results from it. When he was first diagnosed he had severe bone damage and his mobility was severely hampered. The local Macmillan nurse was visiting us and she suggested that the physiotherapist came to try and help him. Very gentle exercises were done and also the use of the…[Read more]

Trish xx

Love Trish xx

Love Trish xx

Many thanks for your replies. We have done a bit of research and are awaiting a visit from Macmillan nurse to talk it through with us. Bone marrow biopsy is on Thurs and results a week after.

Many thanks
Trish xx

Thank you for the replies to has helped us. We are compiling a list of questions to ask the consultant about velcade. We have got info from the myeloma uk website and read it too. Its the wait that seems the worst for us. Will let you know more when we can.
Many thanks
Trish xx

Peter saw the consultant on Wednesday and was told that he has started to relapse after a very short period from his SCT, 13months,this was devasting news to us as a family. The consultant immediatly told us that a 2nd SCT would not be done ( Peter has frozen cells ). He said that as Peter had not got a very good remission period from the…[Read more]

Thanks for your lovely reply.Not wanting to wish time away but i am hoping May gets here really quickly and we can meet the neww babies, they will be our 3rd and 4th grandchildren. We have Hamish who is 3 and Jake who is 16 months, our little treasures
Love Trish x

Love Trish xx

Just an update on our holiday. we had a fabulous time staying with our son and his wife in Dubai. Peter did get a slight cold but we didnt need to see a doctor and he recovered in a couple of days. We had a lazy time and did a few more bits at the weekend when Ian and Sam were home from work. It was just lovely lazing by the pool…[Read more]

Trish

Love Trish

So very sorry for your loss of Stephen. Words are few but thoughts are deep, my deepest sympathy to yourself and your family. Stephen's suffering is over and he is at rest xx

Love Trish x

Peter has seen the consultant today and we asked about re vaccination. The consultant said that he would be re vaccinated for everthing that he needs in about a year from now. He said that if they were done now they would not take because Peter's immune system is still not running properly, being only 9 months from his SCT.Peter…[Read more]

My husband Peter was diagnosed in May 2011 and was suffering very badly from hypercalceamia and was immediatley put onto Zometa infusion, he has continued throughout his treatment having them every month apart from the time immediatley following his SCT. He has been told that he will continue with them for the next year. We have never…[Read more]

My husband Peter had his sct on 1st Dec last year and right from the beginning he was sick which got steadily worse on a daily basis. He was given various anti sickness meds but he found the injections to have the best effect. he also suffered with horrendous diahorrea and did have to wear in continence nappies. He also lost his…[Read more]

My husband Peter had to have some dental work done and he was already on Zometa infusions. It was felt that he really needed to have 2 extractions done and he was referred by his consultant to the dental hospital at Hull Royal. The reply from them was that under no conditions would they do the work or allow his dentist to do work.…[Read more]

We normally travel to the Caribbean every November but my husband was diagnosed with MM last year. We have decided that we are going to visit our son in Dubai and began the insurance srabble. I contacted 8 different companies for quotes etc and i also asked them if he would be able to get cover for the Caribbean another time, the…[Read more]