[PerkymiteParticipant]

Hi Deborah, Firstly the best of luck with your SCT.

When I had mine in 2010 I thanked the lord I had taken in my Laptop and Mobile phone. I would otherwise have been bored to death! ~Do not forget their chargers.

I had a really bad sore mouth and found great difficulty in eating anything, which all tasted and smelt fowl anyway. A Thai cleaner, who I got friendly with, made me a drink, with body building powder(cannot think of the name), Milk, ice cream and Fruit which she made into a smoothy. I found sucking this through a straw was great. She made me two a day.

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Hi Andy, I was shocked when you revealed that you had a Catheter in 2.5 years. I just struggle to put what you actively do with the problems you have!! Big big WOW buddy.

I have had it since 21st June now and I have a trial removal on Monday 7th July. I have really struggled to find a comfortable way of wearing it, I tend to get sore, tried Germoline and Vaseline . At the moment I am trying no underpants, no thigh strap and just wearing tracksuit bottoms.

Although it seems an alien thing to me I have for the first time slept all night – 8 hours sleep – with NO pain. It is heaven.

I also have an Urology appointment on Monday and that should give me some idea of where I am going with my Prostate. I was told when they put it in that I probably would not need a permanent Catheter at this stage and they might bore my Prostate out (like coring an apple the nurse said!)

However, I am now being investigated for Skin cancer. They are going to cut a lump out on of me on the 22 July, with two teeth to be extracted on the 27th July will there be anything left of me I wounder LOL.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Wendy, not a light chain suffer I am afraid but I thought I would welcome you to the site.

I started here in Jul 2009 with a sell by date of Jul 2011. Recently I started on 3rd line treatment and for the first time in 5 years I have just gone into “excellent remission”, my consultants words not mine. The point is you will go through some ups and downs no doubt, as we all do, but just keep going and you will be ok.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

That is real good news Tom – congratulations – Keep going buddy, just keep going.

All the best Carol with your move down under. We will wait for your first report of Myeloma in Aus.

Kindest regards to your both and vasbyte.

David

[PerkymiteParticipant]

I accept I have never done it, take a recorder that is, and my wife who has a memory like an Elephant always accompanies me but I have never heard anybody say their Consultant complained – I would do it if I was on my own.

Kindest regards – vasbyte

David

p.s. I think you are worth it as well Andy LOL.

[PerkymiteParticipant]

Yes my prostate is giving me big problems at the moment. I am having to wear a catheter at present which whilst not pleasant at least means I can now get 8 hours sleep with no pain, something I have not done for about 4 months. Oncology appointment on the 7th to sort out the long term position. All sorts of horrible, they sound that whey to me LOL, options to be put to me then.

Mo and I determine that we ware going to go somewhere; we start the planning process and just do it, making sure we are clear of any appointments etc. etc.. .

Go for it – kindest regards – vasbyte

David

[PerkymiteParticipant]

I believe some people take mini recorders to consultations.

Kindest regards – vasbyte

David

[PerkymiteParticipant]

That is great Pauline, for some it works for others it doesn’t. I think a lot of it comes down to how strong you feel about these things.

I have a friend who believes in the power of prayer and she regularly prays for me each week. Every time I see her I thank her for her efforts. My original “sale by date” was July 2011 and I am still standing! Who I am to say it is not her prayers that are keeping me going?

Kindest regards – vasbyte

David

[PerkymiteParticipant]

Hi Andy, Well it all got delayed yet again. My fault this time. My visit went well on the 4th but I am deaf in the right ear and when booking the appointment with the Nurse I miss heard what she said. I did not want an appointment on or before the 21 June. My son was getting married that day. I misheard her answer and discovered, when the letter came through, I had agreed to the 16th Jun just five days before the wedding!! I had to go to the back of the queue and the extraction date is now the 27th July. Luckily my teeth do not hurt at the moment.

However, I have had problems with my Prostate Cancer -Water Retention – and I have got to go into hospital some time in July for that so I might not make the 27th either. I nearly did not make the Wedding but the hospital pulled out all of the stops to get me sorted out on Friday so that I could travel.

We are hoping to visit Snowdonia and Scotland in August but at this rate I may well be in the Dentist’s chair LOL

Kindest Regards – Vasbyte

David

[PerkymiteParticipant]

I have seen curcumin on the site several times but nobody seems to have ever had the dose or timing sequence. I am not a great believer in third party medicines, we had whole thing going about eating Cucumbers in a greenhouse with a glass of red wine on the site at one time.

I always tend to think of the story that the boss of Walmart, the giant American conglomerate – owner of ASDA, died of Myeloma some years ago. Before he died I believe he set up a Hospital dedicated to Myeloma research in Little Rock Arkansas – yes that little Rock. I understand that that hospital is basically carrying out the same procedures other hospitals in the states are doing. The last time I looked it was doing 2 SCT one after the other but would not release survival rate statistics – this was some time ago mind you. He still died of Myeloma.

BUT if it makes you feel good – what the hell go for it – LOL.

KIndest regards – Vasbyte

David

[PerkymiteParticipant]

If you could post the names of the Drugs that will be a big help I think, somebody will recognise them. The “normal” order of things appears, as far as I can gather, to be CDT, SCT, Velcade and third line Revlimide. After that it is pot luck!

kindest regards – vasbyte

David

[PerkymiteParticipant]

Well done Keith, I was told at my last appointment, 3 weeks ago now, that I was in “excellent remission” so I know how you feel, “Good init”. My next appointment is 27th June so keeping my fingers crossed that it is supported by the latest blood test.

kindest regards – vasbyte

David

[PerkymiteParticipant]

Not quite sure I understand “he is recommending you have Chemo but it is not because of the money”. Revlimid is very expensive.

If your Myeloma has relapsed, and you do not give any details of that, you would naturally go onto the next phase, provided that is you want to.

Sorry I could not be more helpful

Kindest regards – Vasbyte

David

[PerkymiteParticipant]

Like your Dad I have Myeloma and Prostate Cancer. I am on third line Myeloma treatment, I was diagnosed with Myeloma 2009, and with advanced prostate cancer 2011. I am in complete remission with the Myeloma on Revlimid. something I have never achieved in 5 years of SCT and Velcade. My prostate is an agressive one and I am being treated with HTT and I see the consultant, 6 monthly appointment, in July. It has been giving me a lot of problems but I am hoping that we can ease those at the July appointment.

Any questions please feel free to ask.

Kindest regards – vasbyte

David.

[PerkymiteParticipant]

I guess your MUm’s appointment must be coming up this week. Are you gong with her, if not you should? Take paper and pencil if you have not got a good memory to make notes, some people even take mini recorders, it might be a lot to take in at the first meeting.

I wish your mum all the best of luck

Kindest regard – vasbtye

David

[Author]

Posts