Hi Tom, just read this, I get pains in the same part of my spine, ribs and sternum, I am still on Zomorph, I was told I will always have some pain as there was a lot of bone damage (late diagnosis), so I just have to control it. I had my sct in January 2013, so if my appetite goes or I am more tired, or pain is worse, I worry that it’s coming…[Read more]

Hi smoulderers. I think that is right.

Although there are a lot of treatments out there. Not all work for everyone and to date all seem to fail eventually even if they do work initially. So the longer you can put off starting the treatment journey the better in my opinion.  Bisphophanates are used to strengthen your bones due to Myeloma being…[Read more]

Thanks everyone for all your help.

Every day is a gift.

Andy xx

Hi Helen.

Good to hear from you. I hope everything is as well as it can be.

We had a great time doing nothing much. We got invited to a Greek Orthodox wedding in October by the family who run the hotel where we stay. So will be searching around for flights to Athens this weekend.

Really glad you were able to get insured at a reasonable price by…[Read more]

Oh ok that’s 3 not a couple! but it seems to of  worked 😉

That’s good news David. As Tom would say “onwards and upwards” which funnily enough is what we were saying whilst stuck on the Tarmac at Kefalonia’s airport. 😉

Every new pub sounds good to me Tony.

Going try and add a couple of photos one is us enjoying a drink whilst a storm rages outside hmm or was it just after the storm? I think it was the…[Read more]

Hi David.

Sorry your in hospital having your water works seen to. I hope it does the trick for you.

Good news that your still in full remission and that your skin cancer is very mild? Didn’t know you could have mild skin cancer just shows your never too old to learn. Now if only they could get your prostate sorted.

Hi Tony.

Fiscardo is a…[Read more]

Hi Tom.

There seems to be a lot of people reporting bone pain post SCT at the moment on Facebook. From what I’ve read in replies on Facebook people are more sensitive to their bodies post SCT and obviously every little set back the thought of relapse springs to mind. It seems it could be the old site is just being a bit tender at the moment and…[Read more]

Hi Tony.

Funnily enough we were in Kefalonia too. Love the island we go there twice a year if my health permits. Where about on the island are you staying? We stay right near the airport at Svoronata.

Enjoy the rest of your holiday Tony.

Every day is a gift.

Andy

Hi Jan.

Sking wow! I agree we all gotta live. When I see people sky diving for MyelomaUK it crosses my mind that would of been something I would of given ago unfortunately I’ve no chance now. My wife and I go on holidays as often as possible whilst we still can.

Myeloma certainly concentrates the mind.

Every day is a gift.

Andy x

Hi Robert and Jan.

I would be very wary of excluding Myeloma from any travel insurance. Due it’s nature Myeloma COULD be linked to lots of illnesses and ANY broken bones. If you get an infection, maybe not so serious for smoulders, and need hospital treatment the insurance company could and probably say the Myeloma compromised you immune system…[Read more]

Hi Robert.

We’ve just returned from a week in Greece and paid £67 to cover my wife and I, she has diabetes, and that was with nowicantravel too. We’ve used them successfully for our last  four or five trips.

Every day is a gift

Andy

Hi Susie.

Its Dex that needs to be taken with food.  Cyclophosphamide needs lots of water.

I found that cyclophosphamide was worse for side effects than  Dex. It makes you feel sickly for a few days well it did in my case. It also killed my sense of smell and taste and it made concentration very hard. I stopped driving because of it and found r…[Read more]

Hi Stuart.

I posted a few times and I’ve had no problems with the predictive text.

The only problem I’ve come across is when I press return at the end of a paragraph the first letter doesn’t automatically capitalise on the new line.

Ah it does if I put a space after the full stop! Guess your never too old to learn something new.

Thanks for you…[Read more]

Hi Susie.

I found the first few cycles of chemo very bad and I think they made me feel quite ill. Have you been given Omeprazole to take before taking the Dex? It’s to protect you from stomach problems. Also don’t take the Dex on an empty stomach I take mine after eating. Cyclophosphamide needs to be taken with plenty of water.

You’ve probably…[Read more]

Hi Susie.

I  was on 40mg of  Dex so that was 20 of the little blighters for four days! Fortunately they cover the nausea from the cyclophosomide  for the first week. The down side was the crash after you stop the Dex.

I’m still on 40mg of Dex and take the 20 little blighters every week! Though I’m not missing not taking the cyclophosomide .…[Read more]

Hi Andy

The general rule is to stop Zometa 3 months before any dental extractions due to the risk of osteonacrosis of the jaw. Exposed bone is the problem as it dies. I’ve not heard of anyone having a tooth extracted so soon after a Zometa infusion but there is exceptions to every rule. I do know you need a dental exam before SCT so I’m guessing…[Read more]

I will do Stuart. It may take a while because I’m not posting as much lately as I used to  but I’ll try and give it some stick over the next few days

Thanks for your help.

Andy