[PerkymiteParticipant]

Dia, I really enjoyed listening to your music, thanks.

I read your explanation of the lyrics, after I had heard the song, the more I read the text as you sang I had the feeling this was in some way about your Myeloma. This I should hasten to add is not any form of critic (I am as musical as a rusty bed) just the way I heard the words of the song matched to the singer.

Well cannot stay gossiping with you all day got house work to do before the wife gets back, Mo has discovered 4 half-brothers and sisters that she never knew she had ? it?s a long story – and they are all visiting this weekend, with their families!!!!

Kindest regards
David

[PerkymiteParticipant]

Hi Keith, hang on in there buddy, you sounded pretty down in your last posting, "[i]making long term plans, and what a fool am I[/i]" . Not so.

I did not get into remission after SCT, I am on a Plateau so I am told so I might well be joining you all pretty soon on the Revlidimid/velcade whatever bus! So just keep going all of you, you guys are my inspiration so don't let an old man down!

I just wanted to comment on the sensitive teeth. The right hand rear side of my jaw is very sensitive to hot and cold and I do find difficulty chewing on it, so much so that I rarely do! It has been like that from about one month after my SCT. Seems something we all get!

Kindest regards
David

[PerkymiteParticipant]

I think the reason we, as a nation, are lousy at languages is that our language is generally accepted as THE [u]world[/u] language.

I am at present researching Insurance for a trip to the Rhine/Moselle area in July. I will post the results

Kindest Regards

David

p.s. For all dog lovers. My sister's dog Chester, a Leonburger, has just won best of class at Cruffs.

[PerkymiteParticipant]

It is nearly 8 months since we buried our Border Collie, Guinness – he was black and white and had a good head on him – 15 1/2 years of great friendship.

I kept him alive too long because I could not bear to lose him, he suffered in the last month because of my selfishness, something I will always regret. I called the vet three times and three times I turned him away but in the end even I could see how unhappy he was.

I know how you feel Dia, time will not heal, I still miss my Guinness.

Kindest regards, Vasbyte
David

[PerkymiteParticipant]

Grit you teeth Yes, my South African family sent me a word to use [b][i]Vasbyte[/i][/b] it means bite hard. a loverly word I often use it 😀

[PerkymiteParticipant]

Great Min, now get out and enjoy yourself. 😀 Or just lay in bed in the morning – what ever!

Kindest regards

David

[PerkymiteParticipant]

Yes, the Skeletal Survey is perfectly normal; firstly indicates where any Myeloma sites are located but also gives them a "bench Mark" to check further skeletal surveys/X-Rays against.

The fact that they did not carry out any further examination, such as MRI scan, after the X-Ray indicates that they could not see any lesions on his bones which is very good.

Kindest regards
David

[PerkymiteParticipant]

Hi Ruth,
You have not mentioned an MRI Scan, cat scan or even an X-Ray, most myeloma sufferers get at least an X-Ray looking for lesions in the bones. As example of this at my last appointment I reported I had lower back pain and I had an X-Ray within the hour! Lower back appears to be a favourite spot of Myeloma.

If I had a temperature then I would make contact urgently with my hospital, do you have any contact details for a specialist nurse or such? If no temperature just uncomfortable pain I would certainly start taking pain killers such as Paracetamol. They cannot do any harm and could help. If the pain is extreme I would make contact urgently with my hospital. This is only my opinion of what action I would do.

You also have an excellent resource at this site the Myeloma Nurse. Can I suggest you give her a ring the number is on the site.

Kindest regards
David

[PerkymiteParticipant]

Hi Sarah,
If your Mum is going to use a Laptop can I suggest you set up a Hotmail account. My hospital had a free wireless connection but its? Firewall would not allow me to ?send? email. You can get around this by using a Browser Mail application. I picked G Mail (part of Goggle) which was very easy to set up and use. I would recommend you set it up and transfer to your Hotmail account email addresses PRIOR to going into hospital.

We only live 30 mins from the hospital which had excellent facilities so we did not need to pack a bag as such. Toilet wipes were essential although the hospital asked people to stop using them – they blocked the pipes up!! I did get severe throat problems but no mouth ulcers. The Nurses made me up a drink of Complan (the body building drink), Ice-cream, Jelly and fruit (such as banana/mandarin oranges etc…) all whisked up together to make a big Milk Shake, I had it in a pint glass with some straws. I found this went down a treat.

May I wish your Mother all the very best in the world.
Kindest regards
David

[PerkymiteParticipant]

Have you got access to my medical notes Min? 😀

[PerkymiteParticipant]

Hi Andy,

I do not want to dampen your enthusiasm but generally the pp level goes down quite quickly at the beginning of CDT treatment then it tails off, the last little bits being difficult to kill off.

I did read somewhere that they used to treat, irradiate I think, the Stem Cells used in transplants but found that it did not make a lot of difference. The other point I read quite recently was that the Stem Cells that are harvested are immature ones that should not have been affected by the Myeloma at that stage. Both of these points you should take at face value only, there is so much rubbish out there about Myeloma.

One interesting topic, again I make no claim on accuracy, was that at any one time some Myeloma cells "sleep" i.e. are not active. Hence they are immune to any treatment that attacks fast changing cells, such as CDT. Of course at some point they awake and you are back to square one.

Kindest regards

David

[PerkymiteParticipant]

Hi Andy, firstly welcome(?) to our merry band.

I am 68 diagnosed in July 2009, PP level 39. Before I had my SCT, in December, I was absolutely convinced it was the way to go but doubts have begun to creep in and my personal jury is out on it. I did not have the problems of pain and movement that some seem to have with this disease, I was doing jobs around the house before SCT and I am still doing jobs around the house after SCT. As my wife says, ?I was an annoyingly happy bunny before SCT and nothing has changed?. So, I was not expecting anything dramatic. However my Paraprotien which was 1.8/1.9 before SCT went to 2.2/2.3 after it and I have to be honest I expected them to hit zero or .5 area at least and not to go up! I have just wacked all the fast growing cells in my body with a dose of mustard gas, the cancer cells seemed to have enjoyed it :-S

Having said all of that I have just asked myself the question, ?would I do it all again? and I answered, ?yes?. My aim has always been and remains to beat my personal prognosis of ?2/3 years, all being well? which was passed down from on high July 2009 and I think having the SCT has helped me but I set to much store on the SCT ?curing? me which it of course cannot do.

So the short answer! Is YES go the SCT route but recognise its limitations. Personally, I would wait until your PP reading is as low as it will go and reaches plateau, mine was below 2, and even with a double dose of chemo would not go lower.

I did a ?musings from ward 9? whilst undergoing my SCT you might find it of some interest, it is under Treatments, about page 3 or 4 I think.

Kindest regards
David

[PerkymiteParticipant]

A good piece of advice I had was from the Ward Sister when I had my SCT. Listen to your body it will tell you when it is tired she said, and when it does YOU ARE DAMM WELL TIRED ? REST and do not be a bl***y hero! 😀 Advice I always follow.

Kindest regards

David

[PerkymiteParticipant]

Hi Amelie,

From what my consultant said Blood PP and Bone Marrow measurements are two distinct and separate measurements. They use Bone Marrow measurement early on to confirm the type of MM but after that, in my type IgG, they do not need to take Bone Marrow again, unless something dramatic happened where they thought my myeloma type had altered. There are some types of Myeloma where you need to use Bone Marrow but not in my case. Hope this sheds some light for you.

Kindest regards
David

Just had a letter from my consultant informing me that I was right the creaking bones are old age and wear and nothing to do with Myeloma. Hip Hip……..

[PerkymiteParticipant]

Nice to hear from you again Sarah glad everything is going so well for you.

Kindest regards

David

[Author]

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