[PerkymiteParticipant]

Hi Helen,

I have PN and I have had it since my treatment started in 2009. I call it sponge foot because that is how it feels. Most of the time I just ignore it, it does not affect my mobility as far as I can tell. I also get the odd tingle in my hands, in fact I have it as I type right now, but, again, it does not seem to affect my ability to do anything I want to do so I ignore that as well. I did tell my Consultant in the early days and she said "If you can live with it ok, but if it gets any worse to let them know". It did not get any worse.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Sponge feet sound like Peripheral Neuropathy, which is what I have, and if so you should definitely tell the Consultant.

The worst thing you can do is ignore Myeloma so you must also inform the Consultant that that is what your mother is trying to do. I know exactly where your Mother is coming from my Mother in Law was made of the same stuff, a great old girl who I loved dearly.

Helen?s advice is right, speak to our resident Myeloma UK Nurse she will help you. Be strong.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

Thanks for the info.

I am coming up to my final "sale by Date", original prognosis was max 3 years, and I am feeling fine. I planted my last 60 geraniums, from 360, yesterday and just the normal back ache from bending over otherwise I do not feel I am going to pop my clogs at any time soon:-D In fact I am now going camping down by the river Dart for Father?s day that is providing the rain stops. My itinerary for the next 3 months now reads:

June : B& B Isle of Wight and Camping on River Dart
July : B & B Isle of Scilly
August: Villa in Minorca, Spain

However, my 3 monthly appointment is the 29th of this month and I am getting my questions ready should there be any indication that I am actually moving on to the next phase.

Kindest Regards ? Vasbyte

David

[PerkymiteParticipant]

Well done Jacqui, Simple isn't it 😀 😀

Amazed you are out of hospital so quick. Just keep the bugs away as Tom says.

Kindest regards – vasbyte

David.

[PerkymiteParticipant]

Hi Jane, Welcome. Reading your post you seem to be an old hand :-/ , that is with Myeloma of course.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Chris, Yes, that would fit in. My first skeletal survey showed no other lesions other than the flipping great Tumour eating my neck.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Keep going buddy – just keep bl**dy well going.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

That is interesting about the IV bisphosphonates.

I take Loron, two tablets every day and have been taking them since Aug 2009. I have had no reaction or side effects from them at all.

From reading the posts over the years I can only remember a couple of other people mentioning they take Loron, I wonder why they proscribe different bisphosphonates, I assume they all do the same job – which I understand is to counteract the affect of MM on your bones!

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Chris Welcome(?).

CDT is a very personal experience in that most people seem to have different reactions to the drugs. I got very short tempered, which is most unlike me because I do not normally have a temper at all, and I could not sleep the night I took Dex. These two things seem to be quite common in most people we used to call it ?dexattitude?. If he gets dexattitude bad remember it is not him but the drugs, keep that in your mind at all times.

I used to stock up on videos and recordings and put my ear phones on and watch films all night or play on computer. Other than that I cannot remember anything significant happening during my CDT treatment, which was in August 2009. I have had an SCT, Dec 2010, and am in partial remission my PPs are hovering around 2.4. I have the bog standard G myeloma.

Kindest regards ? vasbyte

David

[PerkymiteParticipant]

The knee bone is connected to the……………………..:-D. Keep going Dai, just keep dem bones going Man!!

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

That is a good point – [u][b]Drink Guinness [/b][/u];-)

kindest regards – vasbyte

David

[PerkymiteParticipant]

Sorry to hear your news Liz, the very best of luck to Kev in his treatment which I am sure will contain it.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

It never stops does it:-) Pancytopenic :-S I have been on this site since 2009 and there always seems to be something new.

Best of luck, I hope it is not as bad as you fear.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Carol, I lost a son at 19 years of age, he would be 45 now and no doubt married with children – sadly that was not to be. For 18 months I could not speak his name without welling up with tears. I still think of him and even now I am begining to feel emotional as I write this.

I believe when you lose someone you love the pain does not go away, it just gets easier to hide. However you will move on, as I have, and you will laugh and cry as memories of his life come back to you.

I wish you the very best.

Kindest regards ? Vasbyte

David

p.s I have just read Eve's point "never refuse an invite" and I think it is very important that you do not allow your grief to push away friends.

[PerkymiteParticipant]

Sorry to hear things are not going to well Paul. You and Andy G seem to be on the same path.

Chins up and Vasbyte my friends.

KIndest regards

David

[Author]

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