Hi Harmony

I do not know much about counselling as I chose not to take that root,I am a firm believer that unless you have had the same experience how an earth can you help some one,there are very good books on dealing with people who suffer a trauma.

As for telling people or not to tell is a hard one,try not to have regrets about it,people will…[Read more]

Hi Sarah,

Phil was never told he had to avoid any foods while on treatment but we did (and still do) make sure everything was thoroughly washed and/or well cooked.

I have a bottle of hand gel in each of the main rooms of our house but we never asked visitors to use it specifically, only if people stayed with us would I ask that they used it in…[Read more]

Hi Tina,

Sorry to hear you were unwell especially over Xmas, kev seemed to get pnueamonia quite a lot last year, they’ve now put him on regular antibiotics which seems to have done the trick!
Glad they got on top of yours quickly and you continue to keep well!

A happy & continued good health for 2014.

Love liz x

Hello Lesley,

I’m a carer for my husband kev and I did a coffee morning in November just gone, have you requested the myeloma pack from this forum? I got some amazing merchandise to help with the day, the pack also contained some cake recipes, what I also did was just put cake recipes into search and your spoilt for choice! I raised £230 with…[Read more]

Hi Stuart,

Just to let you know I’ve managed to load my avatar successfully! Apologys if it’s too scary!
LOL! Scrolling is still sticky though.

Regards liz

Stuart tried to edit above post right away and it through me out. Don’t know what I’m doing wrong

Hi Stuart

Went into a post that I submitted and pressed edit button it brought me into my post but when I clicked to add something the complete post was selected and disappeared. When I closed down and reopened it post was there but couldn’t edit. I posted it yesterday, maybe to much time passed to allow editing

Regards Jean

Stuart closed iPad down and restarted again and there it was. Thanks

Jean

Hi Tina

Sorry to hear that you had such a rough time especially over Christmas and hope that 2014 is a good year for you.
Take care
Love Jean x

Stuart immediately tried to edit above post and no Edit button
Jean

Hi Stuart

My version is same as Liz and Andy and still can’t find edit button

Jean

Hi Stuart,

My version I’m using is 7.0.4 (11b554a) hope this helps

Regards liz

Hi Deb

Have they released any information concerning the padimac trials,because the few people who I know who were on it,it did not work for them!!!!

There is no harm in trying for the new trials if you do not get carfilzomib ,you can pull out of trials,you can also find the price of drugs by going into NHS pricing for drugs.!!

I do think you…[Read more]

Hi John,

Although my husband Phil had six cycles of velcade he never had any seizures so I am sorry I can not help with any of your questions. You could try ringing Ellen or Maggie on the infoline as they may know more about possible MM/velcade related causes for seizures, if there are any.

I hope it was just a blip caused by some sort of…[Read more]

I think you are right to ask the question, as much as we need to trust the teams it is your health that is affected by the decisions they make so you need to be happy with what is happening and understand the reasons behind it.

I hope your taste buds return soon – that would be a plus! I know Phil stop liking the taste of white baguettes while…[Read more]

Hi Sarah,

The work question is a tough one but I think you are right not to rush to make a decision. You and M are like Phil and I, too young to consider early retirement but you still need to get the work/life balance right. Unfortunately/fortunately Phil had volunteered for redundancy a few months before his diagnosis. We had sold our house…[Read more]

Hi Sal

Welcome,I think at the beginning it is a big learning curve,your husband will just want to get on with the treatment and I think you would be a help to him if you learn,t all you could about Myeloma plus side effects of the drugs,although it’s your husband who has Myeloma it will effect the whole family,and you will have to be the strong…[Read more]

Jeff,

I am sorry I can’t answer your question but I know that while my husband Phil has been off treatment (he had his SCT a year ago) he has still had monthly blood and urine tests when he has gone in for his Zometa once a month. These tests have been checking his paraprotein and light chain numbers as well as the other more general blood…[Read more]