[susieParticipant]

Hi All, I finished treatment 18 months ago, since when my paraprotein has been rising very slowly, now standing at 37. I’ve been expecting my consultant to say I’ve got to start treatment again and have dreaded every appointment, but, following a total body scan he tells me there is now sign of myeloma activity and other bloods show nothing therefore, he wont look to think about further treatment until the PP’s reach 50 which he said could take 6-12 months.

I am so chuffed to think I am free of it all, even if it gets winter out of the way.

I come on here frequently to see how everyone is doing and I wish you all the best.

susie

[rebeccaRParticipant]

Hi Susie..great news in the grand scheme of things and hopefully your PP will level out or continue to rise at slow snails pace only. Great to hear of no MM activity so that’s more than an early xmas present for you. Enjoy x

[andygParticipant]

Hi Susie

Generally treatment isn’t restarted until other indicators show that your myeloma is affecting you. If all other indicators don’t show any problems i.e. Your bloods don’t go off or you don’t experience bone pain/fractures etc they will hold off on treatment.

Some people can live quite happily with high PPs whereas others get into trouble with only low PPs as is often quoted Myeloma is a very individual disease.

Every day is a gift.

Andy xx

 

[susieParticipant]

Hi Andy

How nice to hear from you. How are you keeping ? well I hope.

My post should have read no activity on my scan. My consultant told me thoughts have changed and they don’t do anything until PP’s reach 50 then they do a bone marrow and go from there.

Are you still on pomalidamine?

Best wishes

susie

[andygParticipant]

Hi Susie

Yes I’m still on Pomalidomide and Dex currently on cycle 37 ..

If you want to find out what I’ve been up to lately I’ve posted in the Treatment group .

Every day is a gift.

Andy xx

[susieParticipant]

Have just seen your update Andy and was about to reply.

My, you have been through the mill. You’re an inspiration Andy, especially to the newly diagnosed. I remember your help to me at the start of my journey.

I wish you the very best. Keep up the good fight.

Take care xx

[deanParticipant]

Has anyone else had this problem ?

I was due to have my SCT at King’s in London over 2 weeks ago to be told they have a big bed problem & im still waiting .  Not knowing each day is terrible . I’ve been warned this can go on for another few weeks & a high chance I will be on a ward not my own room which i also think is bad..  We have made a complaint to the Trust saying how bad this is that a cancer patients are being  delayed.  I just hope I get a date for this week as there is a high chance I could be in over xmas now.. I’m probably not the only one out there but I think it’s really bad.. Has any one had there Sct in a open ward? Sorry to moan.

Dean

[peonyParticipant]

Hi dean,

I had my Sct some years ago, I was on a ward to start with then on the 5th day I was put in my own room, this was to help stop infections. I stayed in my own room until I was allowed home. I had my Sct at the RVI in Newcastle. Hope this helps and all goes well for you.

 

[rebeccaRParticipant]

Hi Dean, sorry you’re not in yet – I had the same problem at Leeds – I had to have the chest port in before I was on the official “ready” list and had to phone up each day for a bed. This started early October – so could not go the gym or play tennis due to chest portal and actually went in mid December so was in at Xmas. I had not been on treatment since the July and in the end my consultant phoned Leeds and kicked off at the wait and lo behold that night I had a call at 10pm to say a bed was free. I was also advised by Leeds nurse to call every morning for a bed so they know you are ready and wanting to go in?!? which I didn’t really as every time I called they said they had me on the list and I would get a call when a bed was free. My nerves were in shreds waiting every day knowing xmas was looming etc. Rightly or wrongly I would say shouting the loudest and also getting your consultant to call them complaining might make all the difference. The other hospital I could have chosen actually gave you a set date and they adhered to it – but it was smaller and didn’t do as many as Leeds (Leeds is like a conveyor belt system and I guess very efficient with resources). At Leeds I was told lymphoma patients took priority as they were more ill – so that makes you feel a bit more humble as well. I have heard some on open wards for the first few days only – wouldn’t want to be in a shared ward /bathroom after those first few days..am sure you will not be in open ward for long. I carried on working until the day I got the call so that filled in some of the “anxious” time but it was pretty awful not knowing when it would all start. Until you are in try and enjoy impromptu family happy stuff/treats as much as you can as it’s a strain for everyone when you are in so try and make the most of now – I know that is easier said than done and I think I deserved an Oscar for acting during this nail biting time. Fingers crossed.

Rebecca

[deanParticipant]

Peony

Thanks very much. Nice to hear you say years back. I’m roughly the same age as when you were diagnosed. Hope everything worked out your end regarding gp etc .

Rebecca ,  thanks for the post wow that was a long wait. My consultants are at the hospital and don’t seemed to be concerned when I tell them it’s been 5 months of treatment now. Will keep at them. Aparenty I’ve been told there new way of thinking is that your more likely to catch a infection from your own body instead of someone else.. I was told I would only get a room if the sickness is to bad ( yes I have to share a toilet ). if it gets to bad then they will give a side room. Personally I think it’s due to a bed problem but they have told me the USA do it this way now and it’s a future thing for the Nhs. As you know more mental worry which you don’t need when going  through a Sct.. .

Thank you again

[rebeccaRParticipant]

Oh dear, that all just sounds like cutting corners and saving money at a time when you don’t need it. Well hang on to the fact that if it gets too “disruptive” you’ll be on a side ward. The only thing with sharing a ward is everyone does tend to hog the shower/toilet (women do anyway) so I wouldn’t/couldn’t wait to use it. Perhaps they are giving you worse case scenario and if you miss the bathroom due to other people just kick off – or better still get family to kick off on your behalf. On an open ward at this time of the year even if patients are well there’s a good chance their visitors will have a cough n sniffle. Any sign of germs enlist family to shout loudly – you shouldn’t have to but they are putting you in a precarious position. At Leeds in isolation – visitors etc were gowned n booted before they entered as were staff. How can there be such a big difference in protocol? I really don’t understand it. I know in the US they are often day patients but they go off to a hotel room/flat which is free from a flow of visitors etc. Anyway, they would not knowingly endanger your health so perhaps this is the way forward and whilst it is not the best scenario for us (and the others on the ward) it is just something we will all have to endure but…again….a short period of time in the great scheme of things….you’ll probably be out in 2 weeks…focus on that. Hang on in there and look to 2017.

Rebecca

[deanParticipant]

Thanks Rebecca

I called Myeloma uk regarding the above. They did tell me some hospitals are going to open wards and more in the future. Cost saving I reckon . . Anyway, it is what it is, i just have to hang in there now .  They just called me to say ” No bed”… Let’s see what happens this week . .. We are also calling them every day to keep the presure on…  Thanks Dean

[Author]

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