[PerkymiteParticipant]

How many pesky little blighters did you get?

Kind regards – vasbyte

[PerkymiteParticipant]

Hi Keith, Bone pain during GCSF injections I have always considered a very good sign that you will get a harvest, so I hope all went well.

I had my SCT in Nov/Dec 2009, aged 66. I was told at the time I would only have one SCT because of my age. Never got to remission after it but a low plateau of 2.9 pp.

5 years later I am on Rivilimide, third line treatment, and low and behold I have hit the magic ZERO pp and am in Good Remission. It can be a rocky, rough path but it is worth the effort.

Best of luck to you

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

I was only on Velcade for a couple of months, I got PN quite badly and was pulled off so cannot really add anything constructive. I would tend to agree with Tom. However, why not mention Rivilimide to your Consultant, I understand it is the third line treatment, I am on it, and you have to have relapsed on Velcade I think but it is worth a mention.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Carol, she is not adorable she is absolutely gorgeous.

We never did get to Australia and New Zealand. We do not have relatives out there so although we would liked to have gone there was never a great urge to visit.

We are planning a small trip to Greece this year if things remain stable, we just want to sit in the sun (well shade for me) at a small bar and have a beer whilst watching the boats go in and out of the harbor. Any Greece lovers will know what I am talking about! My motto is if Andy can do it so can I LOL

All the very best to you
Kindest regards – vasbyte

David

[PerkymiteParticipant]

My Doctor actually suggested Rivaroxaban to me as an alternative but it was vetoed by the Consultant. The consultant said that it was to do with internal bleeding. If you had an internal bleed Clexane could be treated easily but Rivaroxsaban could not.

hope this helps

Kindest regards – vasbyte

David.

[PerkymiteParticipant]

Well Mauritius has a nice Hospital in the centre of the Island, or they did in 1997 when we went there, if you need it.

Are you sure you are covered and Myeloma is INCLUDED not excluded?

Have a great trip.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Eva, Sorry, catching up on posts. Sorry to hear of Slim’s predicament.

Why did Slim have to come of the Revlimide? Did he get to the maintenance leval ?

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

That sounds excellent Helen and I will definitely give them a go when I look for my Spanish insurance. I think the excess are very reasonable. When I first started down this path, 2009, I was getting that sort of quote but as things have progressed and I have added another incurable cancer to my collection it is just getting a little harder for me.

Warts and all is a good saying for us all when taking out insurance :-)))

I agree with Helen, Vicki and Colin …Just get away ASAP (warts and all)

kindest regards – vasbyte

david

• This reply was modified 10 years, 9 months ago by  Perkymite.

[PerkymiteParticipant]

OK one last quick reply then off to bed you go and down to work I go.

You are right my brothers family live in Jo’burg. My Son and his SA Fiance, with my Son’s two children are in SA at the moment. They had a major family reunion the other night and are cementing connections to the SA family which is so so good.

This is our second trip to London we did the boat trip, London Eye, O2 Centre etc etc… last time, but we did not have time to see Westminster Abbey and the Houses of Parliament hence this trip. By the way I was born in Putney, I think Cameroon might now live in my old house but it was slum in 1943!

Like you, we are well traveled and we know where you are coming from. Just see the Doc and declare it all.

A clue the first Honeymoon was a disaster everything that could go wrong did, we laugh about it now. I cried at the time I think LOL I have booked the top suit in the Club as surprise!

Kindest regard – vasbyte

David
GOOD NIGHT

[PerkymiteParticipant]

Hi Helen, I am supposed to be doing my Family tree but as I took Dex today I will be awake all night so will have plenty of time to catch up.

Holidays are important to us all and a great moral lifter which we sometimes need. I am a great admirer of Andy and his trips. We are in the processes of planning one trip to Spain this year. Other than that we go for trips to Cornwall, New Forest, Cotswold, there are plenty of lovely places in the UK. we normally go for a two/three day stop mid week. On the 4th March we are going to London for 3 nights. Day one travel, we are gong by train have not been on a train for some time – if they are running, day two, I have a trip to the Houses of Parliament, this is sponsored by my local MP and he has organised one of his researchers to give us a conducted tour; day three is Westminster Abbey and the surrounding area. There is a whole story about the hotel/club we are staying in all to do with our “honeymoon” 51 years ago. So there is more to this trip than meets the eye! Day four train home.

You cannot go wrong with insurance if you go to your Doctor First and then insist on Full Cover from the insurance Company – you might be shocked by the price but you WILL be covered and sleep easy in SA, warts and all LOL.

Kindest regards – vasbtye

David

p.s. Nearly forgot, it is just as important that any person who is traveling with you carry’s out the same procedure, if they fall ill you could have a problem and it could negate your insurance if not fully declared. Make sure the insurance company is aware of them and record telling them and who you told; make a note of the date and time. And, they must do likewise for you when taking out there insurance. Both use the same Insurance Company. If they tell you they are covered by their Banks Insurance, have a good laug,h and then take out insurance LOL.

[PerkymiteParticipant]

Hi Helen, I read you post with great interest.

My wife has worked in Insurance for over 30 years, She has all the qualifications but now at nearly 70 just does the processing for a local company. She tried to retire but they would not let her, in the nicest possible way, and she does 10 hours, of her choosing each week. they need to keep her on the books for her qualifications LOL.

I did put a post up some time ago about taking out insurance. but it has probably got lost in the site change. Some points you touch on I would like to add my twopenney worth.

1, Before you telephone the Insurance Company go to your Doctor and ask for your medical record print out – they are duty bound to give it to you. Then discuss with him what you must declare to the Insurance Company. As soon as you make a claim the insurance Company WILL contact your Doctor and take a FULL history from him of any medical condition THEY think you should have been declared. Let say you had warts on your bum and you went down with a heart attack in SA. The fact you did not make a FULL declaration (i.e the warts on your bum) is enough to cancel your claim and leave you with the bill.

2. Insured or not. When you declare your problems the Insurance Company will in the first instance rate them as not included/covered and give you a nice low quote. YOU SHOULD ALWAYS GO FOR INCLUDED AND COVERED. Anything else is a complete waste of time and money and will land you with big bills not just medical but could be repatriation. Thousands of pounds. If you are not going to cover Myeloma you might as well have no Insurance cover at all because you are kidding yourself that you do.

3. I have several problems, Myeloma is just one of them and at the moment a minor one! So it is not quite fair but it will give you some idea. My wife and her colleges, in an Insurance Broker, tried to get me insurance to go France for a week. I have the EU card etc… fully covered, and on the understanding that I use the PUBLIC health card fist the figure quoted was £700. We decided, as one of the party was a fully qualified Doctor and my Son-In-Law, has a large people mover, and offered to get me back to England if I had a problem, to go without but we all knew and all agreed what we were doing.

I look at some of the figures quoted and often wonder what they will discover they really have Insured if push comes to shove. I just hope their luck holds and I do not see them on the evening news.

Kindest regard – vasbyte

David

• This reply was modified 10 years, 9 months ago by  Perkymite.

[PerkymiteParticipant]

Thanks Ladies, Yes, it makes sense to me anyway. At the moment I am doing well I see. I will have to start getting used to using these measurements I think.

Many thanks for the help.

Kindest regards – vasbyte

David

• This reply was modified 10 years, 9 months ago by  Perkymite.

[PerkymiteParticipant]

Hi Hilitli,

I am sorry to hear about your Mum, it sounds as if she has really gone through the mill. I can only give you my experience with Velcade. I relapsed and was given Velcade as the next (2nd line) treatment. Unfortunately it did not suit me at all and I had very bad PN in my legs so after 3 doses I was taken off I am now on Revlimide and that has reduced my Para Proteins to “not detectable”. This is the first time that has happened in 5 years of treatment.

Personally I would go with the Consultant’s recommendation but watch out for PN and report it as soon as you can.

I wish you and your mum the very best.

Kindest regards – Vasbyte

David.

[PerkymiteParticipant]

Hi Andy, I built my own computer for my 60 birthday it was a great machine and served me well for many years then I got sold some duff RAM and it burnt up the motherboard. My children bought me a new laptop a Dell Studio 1745. It is a good machine and I have used that ever since. Last week I put in 8 Meg Ram (was 4) and a new SSD drive and just for good luck a new fan. The SSD really makes a difference.

Once I have done the Family tree I intend to digitise all my Photographs, 50 years of photographs – a daunting task.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Andy, My Doctor wanted me to go on to Rivaroxaban but the consultant said no for some reason. So I am on the old clexane, I am going to take it up with him on the 21st Feb, my next consultation. 700 injections Wow.

I think the trick with Clexane is to keep the needle still whilst injecting and inject slowly but steadily. Do not wipe the area of injection just leave it alone. I inject in the tummy, oh and do not inject on the belt line of your trousers. The only bruise I have is the one made by the nurse!

And another real big Wow Andy, in fact a round of applause is in order I think, for your insurance quote of £86 for YOU and YOUR wife one week in Greece unheard off I think, Mind you it does depend on so much and the word REMISSION, if you can use it, is a very big factor in the whole thing. I think your advice to Stephen is spot on.

Sorry I have been a bit tardy in my post All, I have started re-visiting my Family Tree which I am putting on a rather complex program called Family Tree Maker, well it is complex to me if you do it correctly, and that is taking a lot of my time up.

Kindest regards to all – vasbyte

David

[Author]

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