Dearest San,

I am so sorry to read this sad news. Phil and I are thinking of you and your family.

Megan

Hi Charlie and Mary

Yes am fine Thanks, yes its come back but to be fair I look and feel better than I have for some months to be fair.

Aww and dont mention No Computer 🙁 when we moved all I had was my Mobile phone to go on tinternet and it just aint the same Ha ha.

We sold our Home and are now in a rented Bungalow put the money in the bank…[Read more]

Hi Megan::Am pleased its not too painful all the time but am sure the niggle knowing its with you is a bugger 🙁 Thanks for your advice, I hope phil is soon sorted x

Hi Helen:: pleased you got through it and I know I will also 🙂 am pleased you are in remission and so soon its a great feeling I can tell you. x

Hi Liz and Kev::: well mine…[Read more]

hi Carol,

good luck for monday, kev did all the above and got away without having any problems with his mouth,so ice and mouth wash are well worth it all the best and take care!

love liz xx

hi Andy,

hope every things going well, i see your going to the lakes soon, mine & kevs favourite place and cornwall! so if we don’t manage to get abroad thats where we’ll be booking. i see you mention nottingham do you have family or friends here? as thats where we live, was it you who mentioned in the past attending the nottm beer festival?…[Read more]

hi Tom,

hope all goes well monday, kev had velcade/dex sub cut: twice weekly into his stomach
he got very good results zapping his lights chains very quick but the P/neuropthy got really bad and they cut it down to half so do mention it if it starts as they can control it and stop any damage setting in, but I’m sure you’ll be vigilant tom and…[Read more]

Hi Tom,

Nothing seems to help Phil’s neuropathy but it is mostly just annoying, not painful too often luckily. Hopefully you can avoid it but if it does start get them to prescribe you something to help as soon as possible, I think if it can be controlled/stopped early on it is more likely to go away. If you need/want any info in the future…[Read more]

Thanks Megan, and yes they cut it down to just the once a week due to the side effects,and I hope for as few as possible Lol.
Hope Phil is sorted re the PN ??

Love Tom Onwards and Upwards x

Hi Carol,

When my husband Phil had his Melphalan he chewed on ice chips before and during the chemo. We got the ice from the ice machine in the ward kitchen. Phil also used the mouth wash provided during his stay in hospital and when he got home. He had no mouth ulcers.

Good luck and keep us posted.

Megan

Hi Tom,

Good luck with the new treatment :-). Velcade worked well for Phil but he has ended up with peripheral neuropathy in his feet so do keep your consultant informed about any pins and needles or tingling in your fingers or toes. Other than that Phil had very few side effects and his Velcade was given more often so you may find neuropathy is…[Read more]

Hi Jane

Well you are for me young lady.

sorry about your rigs and high Temp and 17 Grandkids wow well done you lot ha ha.
Chest infections is a burden for us all with this MM and High temps we just have to keep on top of it all the time, normal folk can aloow a bit of a delay before Dr is contacted but we have to contact them and have them on…[Read more]

Hi Carol
I am pleased I light your path, We have to stay strong and face it head on I am expecting another four years on this route and am sure we will get it 🙂

Good Luck on Monday and dont forget suck ice pops when they give you the Melphan like it is going out of fashion, and use the mouth wash as its also going out of fashion I used bottles…[Read more]

Carol when Frank started melphalan he also had a supply of ice lollies. After cells returned they supplied a mouth wash and he was for ever using it – he had no problems with his mouth

Good luck
Jean

Hi Emma

Am ready for it as I knew it would come back and four years remission I think was good.
Yes the site has had a fair bit of logging on that bad I changed my password a few times thinking it was me ha ha.
Pleased your Mum is doing well and you had a great Xmas.

Love Tom onwards and upwards xxx

Hi Chris

Sorry you had to join us, but welcome. June has given you good advice. My husband smouldered for 6 years. He went every month to consultant. Frank only thought of MM when his appointment came round. I think I worried about it more than he did. I hope you smoulder for Many many years. Ted will probably come along soon, he has been…[Read more]

Hi Jeff

Well age and not having SCT explains it.

I also think,we do not take every thing in when it’s not good news,I am sure the consultant will explain if you ask,or see the myeloma nurse who is in charge of the trials,they are usually better at explaining it,in none medical terms.

People can be smouldering under 10 and it’s only when other…[Read more]

Hi David and Andy

Good to see you are still around and doing as well as can be! Are the Myeloma masses outside the bones David,you do not say???,
Glad the PP are right down,how are your bloods with the Revilimid ????.

Have to admit David I am not keen on the new format,my I Pad,makes it difficult to log in,and cannot get the site to remember me…[Read more]

Hey Tom vodka on you. No make that gin

Xx

Hi Chris

You are lucky in many ways,because of routine blood test they have caught you early plus SMM,so that’s all good news.

There is no reason why you cannot live a reasonable normal life,I would advice you to ask to join the under 50 as you will find people of your own age!!

What I will recommend is you educate yourself concerning…[Read more]