[tishwishParticipant]

Thank you everyone.

Megan, Peter still gets the rash on the same day at the time in the cycle….the doctors now believe it is a type of acne caused by the steroids We have an appointment with the haematologist tomorrow, Wed, to discuss Peter stopping his Velcade chemotherapy in order to have his hernia op done. We spoke to the specialist nurse yesterday and she had a conversation with the doctor who agreed that Peter needs to get the op as soon as possible and he said that having to wait for 6 weeks is cruel. Peter is still in tremendous pain and is feeling very depressed at the moment.
Will let you know how we get on

Thanks Trish

[tishwishParticipant]

Hello Terry

Sorry to hear about your PP's rising. Hope you get some answers at your next appt. My husband Peter had SCT in December / January 2012, however he was in full relapse in January 2013. The consultant immediately told Peter that his next treatment would be Velcade, 8 cycles in 6 months. we are currently on cycle 5. PP's have come down from 18 to 12 so far. Peter's PP's were 6 at his 100day appt and started to rise again in November 2012.
Good luck

Trish

[tishwishParticipant]

Hello everyone.

Peter has seen the specialist today and he believes that the rash is acne, caused by the steroids. He has prescribed a lotion to apply next time they appear……which will be 2 weeks today at the end of cycle 5 of Velcade plus Dex.

Trish xx

[tishwishParticipant]

Thank you Pat and David

We have seen the specialist today who told us that the jelly legs is quite normal. Some people suffer more than others he said. He also told us that all research seems to point to that whatever pins and needles patients have at cycle 5 is the worst it will ever be. So based on that info it was decided that cycle 5 of the velcade treatment would commence today. Peter has also been suffering from a severe pain and burning sensation along with a lump, it now transpires that he has a hernia. Peter has to see his own GP with a view to been referred to a specialist for an operation……however it is unlikely that an op will take place until the chemo course is completed. The saga just seems to roll on and on…….

Trish xx

[tishwishParticipant]

Hello

Peter has continued to have the rash at the end of each cycle. At end of cycle 3 the doctor told him that she believed that the rash was caused by the steroids, however she couldn't understand it really. Peter is taking same steroids as he had for the CDT treatment and with no effect then. It is exactly the same each time, spots identical to chicken pox. Swabs and blood tests show no positive reactions to chicken pox or shingles. Peter has now seen 6 doctors and not one has ever seen the rash before in other patients. Cycle 4 just ended and the rash is back agan.

Love Trish xxx

[tishwishParticipant]

Hello Eva
Thank you for your reply. We are now even more confused with the spots/rash. They appeared again at the end of cycle 2, exactly same as at end of cycle 1. Phone call to hospital and doctor said not to go to hospital unless Peter became unwell. The spots cause Peter no trouble, no itching, scratching or pain.
Peter was at clinic on Friday and the doctor was also very confused with the rash. he brought a senior consultant to look at said spots and he said that you can get skin infections with the Velcade. After much discussion it was decided that another blood test be taken to check for chicken pox/shingles and that they agreed that cycle 3 would start also.Peter has had a little problem with his eyes, they seem to be watery and runny.
On a better note Peter's paraprotein has come down from 18 to 14, this was from a blood test taken on 5th April.

Love Trish xx

[tishwishParticipant]

Hello Eve and Slim

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

[tishwishParticipant]

Hi David

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. However today we got the go ahead we needed. Treatment is same as Eva. Peters bloods are hb 11.8 wc 4.3 pl 122 neauts 2.49 PP 18

Trish

[tishwishParticipant]

Hi

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 insurance………they now not sure if we are covered on insurance because we have non refundable tickets.

The saga rolls on and round and round…………

Spoke to them again today………drew a blank!!!!

We will wait and see what happens next

Love Trish x

[tishwishParticipant]

Hi

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 cycle 2 of velcade.

Love
Trish xx

[tishwishParticipant]

Hello everyone

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 to test for anti bodies to chicken pox…if none are present Peter will be given someone elses antibodies to prevent him getting the Pox or shingles. The mind boggles at technology.
Also after discussion it was agreed that Peter's 2nd cycle of Velcade is delayed until 2 weeks today. This will allow him time to recover from whatever the spots are, chest infection and a virus.

Love Trish xx

[tishwishParticipant]

Hi sarah

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

Love Trish xx

[tishwishParticipant]

Hi

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 with the airline, we needed a non show letter from them. Well Peter was not due to travel until 11th may and they wouldnt give letter until after then. However they have given me a ref no and if need be the insurance company get info through that.

Trish xx

[tishwishParticipant]

Hello Nikki

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

[tishwishParticipant]

Hello Deborah

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

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