[dickbParticipant]

Hi terry,
Know what you mean being 51, a young daughter, unable to work and little chance of increasing my pension pot – assuming of course I make it that far. However we don’t know DXS’s circumstances.

Our stress levels have been pretty high recently but there is a bit of light now that my MM has stabilised. I’m hoping the medics will sign me off for a few working hours so that at least I can get my foot back in the job market’s door. I don’t know how affected you are but I do really know how crappy it is for people like us who have worked since school, paid into the system without a break and are now being stuffed by the system that is supposed to help us. We just have to get on with it and stuff the rest of them. Our country has become very selfish and greedy in the last 25 years but we can’t change that, we can only try and find our own way around it.

[dickbParticipant]

What’s your Lucozide count like? It might be because the chemo has affected your white blood cell count and so you are more perceptible to coughs and colds and less able to fight them.

[dickbParticipant]

Hi there, if you at the thread Buddy’s wanted – Stem cell harvest – Dec 2013 – in Treatment, there is a lot of info from three of us that went through it at the start of the year. It’s like a diary so should give you some usefull insights on what to expect.

[dickbParticipant]

Hi Angela. Good news about Graham. I’m not too bothered just yet about the IgG level. The leader of the local self help group has had a IgG level of between 26 and 28 for the last 10 years and is managing OK. I haven’t got Kidney damage and my Calcium levels in the blood are normal. The last 3 blood blood test show no change in IgG also so it is a form of remission I suppose.

In a couple of weeks I go to a clinic to learn how to live with MM such as sport, activities, work etc so everyone here is working as if I have achieved remission.

Don’t push Graham too hard with jobs around the house, don’t want any silly accidents.

Richard

[dickbParticipant]

I’m afraid it was slightly different for me as I live abroad. Here they always do it in Hospital. I believe a number of UK hospitals do the Chemo as an outpatient and then when the white blood cell count drops, they are admitted.

[dickbParticipant]

Sickness is normal, I assume they have given him Mephalan which is very very strong. I was sick for nearly two weeks straight after the mephalan. His medical team will be very experienced in this and so will be looking after him.

[dickbParticipant]

Hi there. Don’t think your complacent, just blasae maybe. Perhaps having lived with MM for a number of years makes it part of normal life. I suppose it’s the same for people in various walks of life – ex pats who live abroad and see how the new ex pats look at their new surroundings in wonder or forces personnel who have been at a particular posting for a while and see how the new guys react.

Any, nice of you to join us, hope you find the site helpful.

[dickbParticipant]

Hi Mavis, thanks for that, that’s the trouble with MM, it’s a real lottery.

[dickbParticipant]

Hi Jeff,

hope the news is good with the Revlimid. Don’t know enough about it to offer true optimism but my medics believe in it.

[dickbParticipant]

Hi, interesting point michellew, suggest you look at these sites:
http://www.cancerresearchuk.org/cancer-info/cancerstats/keyfacts/myeloma/
http://publications.cancerresearchuk.org/downloads/Product/CS_KF_MYELOMA.pdf
http://www.cancerresearchuk.org/cancer-info/cancerstats/types/myeloma/.

Suggest that these figures show that it is uncommen (Incidence of 6.6 /100,000 of population compared to 104.7 for Prostrate Cancer. Source Cancer UK)

[dickbParticipant]

Hi Ang,

Doing Ok. had a 2nd opinion a couple of weeks ago because my SCT had not been particularly succesful the medics wanted to do another. – My IgG had only dropped to 23, they were 36 I believe before the SCT so the difference was minimal. Since the SCT I’ve had 3 blood tests and they have shown IgG stable at 23 so the agreed route is no further treatment for now just monthly blood tests. I should say that they also looked at calcium levels in the blood and as they were normal they were ok with the IgG being at the level it is. I won’t have a BMB – my consultant doesn’t see the point as she can get all the info she needs in other ways. Besides the BMB will only tell youi if you have MM cells in one particular part of the body at that given time.

So it’s off for blood tests and Biosphosphomide next week. All good fun. I hope you are ok with Graham being redundent, the reason I say that is because I haven’t worked since Nov 2012 and I hate it I’m afraid, you can only clean a house so many times a day. My unemployment is compounded by being in a different country, my language skills are still poor and my age. There are plenty of young people here and Germany acknowledges that finding work for a fit healthy qualified 50 year old national is hard anyway. That for me is the worse thing about MM, it will totally screw up your future probably more than any other cancer. The biggest concern is financial. If the redundancy pays enough for you to be confortable in the short to medium term than you should be ok.

[dickbParticipant]

Hi Ang,

hope the run goes well. ironic isn’t it that such an awful illness could infact help improve the fitness and health of others 🙂

Hope the BMB goes well, what have his blood tests shown since Graham came out?

[dickbParticipant]

Hi Maureen,

At least you know what to expect from the Velcade, as for me, my consultant tends to stick with the blood figures and so I don’t get to know what my light chains are doing. Maybe I’m just a bit weird where the FLC don’t give a good enough indication of MM.

[dickbParticipant]

Good news about the Velcade. Any sign of Neuropathy yet?

[dickbParticipant]

People come, people go, the good thing is that their knowledge is normally past to other team members and with their knowledge and experience, research and innovation continues to carry on. There is always a feeling of something lost, a vacuum, when a highly prized team member moves on but that can often lead to an even more capable person taking their place (Man Utd being the exception maybe). Give it 6 months and it will be just a memory.

As Dusk pointed out, Gareth Morgan moving to the States does not neccesarily mean we will not benefit from any future research by him. Research crosses borders and with MM having a strong International recognition, everyone will benefit in time.

[Author]

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