[PerkymiteParticipant]

Yes, I have always been a great believer in "asking first". In my situation I tend to check everything medically related with my Doc before I stick it in my mouth 😀 :-D. I do not want to complicate things any further.

I did pull on some socks last night and it did seem to help. I used to do this when my feet got very cold but I never thought about it in a heat wave 😎 But I have to say it did seem to help and I slept from 3:30ish to 6 this morning.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Megan, thanks for the reply. I seem to have the same as Phil.

[i]Most people find it decreases two to three months after they stop the treatment[/i] Ouch :-S I am going to go over to the hospital day centre today and see what they can give me. I have got to get something to help here. Gabapentin worked for Phil did you say? Vitamin B Complex is that something you buy in a health/herbal shop?

I had a nice day at the beach and we then met my daughter and her family. They wanted me to stay overnight but I just had to come home. My Granddaughter even offered me a bed in her new flat bless her, but when you get up in the night, like now, and just do not know what to do with yourself it is best to be at home I think

Thanks for the help.

Kindest regards – vasbyte.

David

p.s. going to make a hot milky drink and try going back to sleep.

[PerkymiteParticipant]

If you look at the time of my last posts yesterday you will appreciated that I had a sleepless night.

I think my Consultant was right to pull me off Velcade my legs gave me hell last night. They feel like they have done a 100 mile run. They ache terribly and I notice I am getting cramps, I have managed to pick it up before it started and moved my legs in time so far. I have "spongy feet" again as well.

Ahh well, off to Teignmouth today and will catch up my sleep on the beech!

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Kathy I live in Taunton Somerset. I was diagnosed with MM in 2009 and am now moving onto 3rd line treatment.

I would recommend the Musgrove Park Hospital. It has a dedicated Cancer centre in the Beacon Centre and I believe that I have had first class service from all of the staff. It does not have Prof or other noted person dealing with MM but all the same the Treatment is good.

I wish you the best of luck

Kindest regards – vasbyte

David

[PerkymiteParticipant]

I am sorry to hear of your situation.

May I just say your Dad will be emotional, tired and confused because of the drugs he has been taking he has not changed. Remember your Dad as he was and try and put this vision aside.

On a practical note I would not recommend visiting your Dad if you have an infection unless he is nearing the end.

Kindest regards – vasbyte

May your God walk with you and your father at this time

David

[PerkymiteParticipant]

Well done Tom, nearly finished the first part 😎 . Now make sure you stay infection free for the next 3 months. It is so important. Do not be quick to get out an mingle with one and all.

kindest regards – vasbyte

David

[PerkymiteParticipant]

That is not just good news it is fantastic news 😀 . Well done to all concerned. Enjoy that Cruise…….

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Thanks Andy, Yes, the more I think about it the more I think you are right. The Consultant I saw is a real nice guy and having stood up for me in the SCT argument I just cannot believe he would just take me off for no good reason. He probably explained it all too me but I was just not listening properly I am sure. As I say I will have a chat to my Doc when he returns from holiday.

I would add to your signature "every day is a gift, make sure you open it.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Dai, I forgot to answer your question re prostate correlation.

When I have asked about the affects of treatment for Myeloma on Prostate treatment they said there is no cross over affects and the treatments do not affect each other and can be done side by side.

One thing I have noticed is the Consultants stick rigidly to their area of expertise. Haematology does not answer questions re Prostate or vice versa. What they do is suggest you direct your question to a. your Doctor or b. the Prostate consultant.

Kindest regards – vasbyte

David
(to fight the darkness do not draw a sword – light a candle) – anon.

[PerkymiteParticipant]

Well, you bunch have certainly given me lots to think about. I have an appointment with my own Doctor on the 29th July and am going to take up the issues with him, he is a personal friend. He is away sailing in the Med until then.

At the moment I am slightly puzzled by what has happened and quite unsure of what action to take, as I said earlier it is like your first diagnoses. The Consultant that pulled me off Velcade was the one that fought for me to get a SCT when other Consultant had ruled me out. So I have always considered him especially to be on "my side" so to speak, which only adds to my confusion!

My legs started to become extremely uncomfortable, below the knees. This was not all the time but getting more frequent. The skin did not seem to be attached and felt lose. I could not lay in our easy arm chairs because of the pressure on the back of the legs. It felt real odd to touch added to that I had started to get PN in my feet and just a light tingling in the hands. My feet were not painful but I knew the pn was there, I could still walk ok.

Yes I will be taking out insurance for my holiday, but after the 30th. First I have a Prostate Consultancy this Friday, which I hope will clear me to go. Then I speak to my own Doctor and get a clear to go plus my list of items I must ensure I declare. Insurance Company's will only insure from the date the holiday starts or just before anyway so I have time the ferry is 23rd August.

Thank you guys – you are great bunch to have on my side.

Kindest regards – vasbyte

David

p.s I was having a laugh and a joke with the Staff Nurse that treats me and she made the comment that the Consultants considered that my blood reading had all flattened out and that there was nothing further to be gained by more Velcade plus the danger of increasing the damage to my legs.

[PerkymiteParticipant]

My condolences Annette, I know it is hard when you lose a parent but it is in the natural order of things, not that that helps you one bit to know that.

I lost a Son at 19 years of age, I kept telling myself this was wrong he should bury me not me bury him. It was the hardest years of our 50 years of marriage. The local vicar said to me stick every photograph you have of him up on your walls and you will say hallo to him every day. We did and we did find it a great help.

I like Dai am on the wrong side of this decease, added to which I have another killer, Advanced Prostate Cancer. I have spent the last years building memories for my Grandchildren and through this for my Son and Daughter and finally my Wife.

I tell my wife that "I will never leave her" no matter what and I mean it.

Keep those memories alive Annette.

My kindest regards – vasbyte

David

[PerkymiteParticipant]

Not expecting the blood reading I was caught totally unawares. It was like my first diagnosis in 2009 all over again.

The more I think about it the more I am convinced he had already decided, because of the increased PP reading, that he was going to take me off Velcade. The fact that I talked about my uncomfortable legs from the knee down just added weight to his decision for him.

I do not think finance was in the equation. Although I have always believed Velcade was the cheaper of the two drugs, anyone know?

kindest regards – vasbyte

David

[PerkymiteParticipant]

Have a great trip Dawn, I hope you do not need that insurance:-D

kindest regards – vasbyte

David

[PerkymiteParticipant]

So, why have you suddenly decided to join this forum?

regards

David

[PerkymiteParticipant]

Hi Jean, I am on my 4th cycle of Velcade. I take two Paracetamol with 40 mg Zomorph twice a day. The Consultant said that after cycle three, if all was ok, they would reduce my pain killers this week.

I have not had any affects from the heat apart from some very pleasant walks 😀 😀

Kindest regards – vasbyte

David

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