Hi Mandy,

I am glad to hear you are feeling so positive and strong. Hopefully you have had your second lot of stem cells by now and then it is just a waiting game, watching your blood counts drop and then the happy day when they start to climb again 🙂 My husband Phil was confined to his room for about two weeks when he had his stem cell…[Read more]

Hi Dan,

It is great to read such positive news for you and your Dad. I don't have any experience of a second stem cell transplant but I think Eve is right that the general outcome is approx half the remission time as was achieved from the 1st transplant, as your Dad had quite a long remission the first time this bodes well for the second…[Read more]

Hi Helen,

Velcade seems to be particularly annoying for wait times. Phil had to go in for the blood tests in the morning and then they had to wait for the results of the tests before they would even make up the velcade and then you had to wait for the velcade to be delivered to the ward and then you had to wait for someone to inject it and…[Read more]

Hello everyone,

I have just listened to the Food Programme episode mentioned in the article by Brian Durie that Peter posted above and it was very interesting, even more so for Phil and I as Sheila Dillon who presents the Food Programme is treated at Bart's by the same consultant as Phil is treated by.

If anyone would like to listen it is…[Read more]

Hi Christine,

I am so sorry about the BMB results. I can't help with your question but I just wanted you to know I am thinking of you and Chris and hoping Chris finds a treatment plan that will not make the neuropathy worse.

Megan

Hi Tom,

Sorry to hear that your bone pain is back. Phil had bone pain all through his PAD treatment and SCT and he still has it now although some days it seems better than others. His main problem is his back and ribs. Phil has had a consult to see if kypholplasty would help but at the moment he has decided against it, he will see the…[Read more]

Hi Clare,

Welcome to this forum, I am sorry you have had to join us but I am sure, like me, you will find everyone here very helpful and supportive.

My husband Phil was diagnosed with MM at the end of May 2012 aged 43, quite a shock for both of us! Phil has been treated at Bart's since his diagnosis, firstly on the PADIMAC trial which was…[Read more]

Hi Richard,

I hope the delay is a short one and your liver results return to the normal range quickly. It is annoying that the drugs you need to make you well can cause so many other problems, it is good that they are on the ball though to avoid further complications.

Megan

Hi Maureen,

I am glad to read that Ian is feeling better, hopefully the bed sore will be fully healed soon.

Are you making the food you take in? I know it is more expensive but maybe, to save yourself some time, you could buy ready made things from the supermarket? I found I got very tired while Phil was in hospital for his SCT, trying to…[Read more]

Hi Dai,

There does seem to be varying information depending on who you talk to. My husband Phil receives Zometa once a month and was told it would be for two years. When Phil was on treatment it was added on with the other drugs once a month and was still given while he was in hospital for his SCT. Now that he is post SCT he is having it…[Read more]

Hi Richard,

I can't help with the HGV licence but my husband Phil drove all the way through his PAD treatment except for a short while after he had operations on both both legs due to bone damage. After Phil's SCT he did not drive for a short while due to fatigue but he is now fine driving again. He was also never told he could not…[Read more]

Hi Richard,

How frustrating but at least things should be straight forward when you start on Monday. And as they don't work weekends in Germany you will never have to sit there waiting for treatment on a Saturday 🙂

I hope it goes smoothly on Monday.

Megan

Hi Jacquie and Geoff,

Glad to hear that Geoff was able to harvest enough for a transplant.

I hope you have a great holiday Jacquie and come back rested and ready for the next step.

Keep us posted on the transplant when it starts.

Megan

Hello Jean,

You are not being selfish at all. As much as I wanted Phil home it is a big responsibility to take on when suddenly it is just the two of you without all the back up of the nurses and doctors on the ward. Just take it one day at a time and don't worry too much (easier said than done!). Phil came home on a Wednesday so I took the…[Read more]

Hi Dai,

I am sorry to hear that your neutrophils are not behaving themselves, hopefully by next week they will have recovered enough for cycle four to start.

Megan

Hi Chris,

Phil is 3 months post his SCT and like Tom said, he is very itchy from the hair growing back. Phil doesn't have a rash but the hair growing back is causing a lot of scratching 🙂

Megan

Hi Jean,

I did the same thing just before Phil came home, dettol on every surface, all light switches and door handles cleaned and I carried on doing it daily for the first month but as his blood results got better I was able to ease up on the daily cleaning. It is funny how the new found understanding of germs changes your perspective, I…[Read more]

Hi Maureen,

That is great news, hopefully it will inspire Ian to do more physio and get home as soon as possible 🙂 The trips to the hospital must be wearing you out, please try and look after yourself as well.

Megan

Hi Val,

That is great news and very encouraging for those of us at the start of the journey, my husband Phil was diagnosed in May 2012. You are right about all the new treatment options that are becoming available.

I hope the house move goes well.

Megan

Hi Babs,

Happy Birthday stem cells :-). Your post is very encouraging for Phil and I, Phil's first stem cell birthday will be December 20th, 2013. Enjoy Australia and your other holidays.

Megan