[SharonGParticipant]

Not sure how many people may have seen this article but I am sure many of you will find it interesting!

http://www.bbc.co.uk/news/health-14572284

I know I haven't posted on the site much but I do look regularly and have been very saddened by some of the recent posts.

Love Sharon x

[tomParticipant]

Hi Sharon

I have seen it and I asked one of the Nurses about it when I went in for my Zometa and she says she will look into it and see what its all about 😀 so if I dont forget I will ask in about 4 weeks time 😎 Thanks for the link

Love
Tom "Onwards and Upwards" xx

[eveParticipant]

Hi Sharon
Must admit I search for everything concerning this disease,you just live in hope ,that there is something out there,that will work,and actually cure Myeloma.

I think the answer lies treating it why it is still contained in the marrow.
They are talking about 10 years research for Ecstasy.I also think some Myeloma,s are easier to treat than others,Slim has kappa light chain,and that seems harder to detect and is often found later,when the disease has well progressed.
Best wishers Eve

[SharonGParticipant]

It will be interesting to see what they say Tom, I will have to ask my consultant when I see him next what he thinks too as he is the main myeloma specialist in Birmingham!
Unfortunately I don't think I will be able to wait 10 years either Eve, I have IgA myeloma and it tends to be more agressive than some of the others and my allo transplant only lasted 10 months so I am already on 2rd line treatment.
However I will be up for any trials!!!! Lol!

Love Sharon x

[PerkymiteParticipant]

Very interesting and no doubt one day there will be a cure for Myeloma. Regrettably, not in my time I think:-D However like Eve I do not give up hoping.

Kindest regards – vasbyte

David

[eveParticipant]

Hi All
Sharon what are you on now.
It does not look if Slim will be given the option of SCT,because of lung damage with septic pneumonia,after doing 6 cycles of cdt and finding it has increased in the bone marrow to 80%,I have to wonder if trials are the right way to go?,they measured the success bench marker in free light chains,which actually was not a true reading only discovered when another bone marrow sample was taken,now he has to have bone marrow taken every cycle on velcade.

That is why I wonder if the answers may lie in treating it when it is contained within the bones,as you say David I agree not in Slims time,we are just buying time'
Slims believes there has to be a first,so again he will tolerate a lot of treatment,he does believe your mental attitude helps,Love Eve

[SharonGParticipant]

Hi Eve

I am on my 7th cycle of velcade with cyclophosphamide. When I had my sct in Feb 10 I went the whole way having an allo sct with donated cells from my brother, which means I cannot have a 2nd sct. It failed fairly quickly with me developing a plasmacytoma on my spine in December and then 2 further tumours later I started velcade in April. Typically as this disease is so individual my paraprotiens have not gone above 2! So the only way they have been able to monitor how well the velcade has worked is by having repeat PET scans, before treatment, mid treatment and hopefully I will have one at the end of my treatment. However my local hospital are not keen to continually fund PET scans which have to be done in Birmingham, so I am not sure how they intend to monitor me otherwise!!! As you say mine appears to be mainly in my bones, but my consultant has been kind to me and has not done lots of bone marrow biopsies, I don't think I would be too happy if I had to have one every 3 weeks!!!!!

The PET scan is a ct scan, but you have a radio-active solution injected into you before the scan which then highlights any active disease.

Take care
Love Sharon x

[GillParticipant]

Ecstasy? Cannabis? I have had to stop Stephen climbing up into the loft to look for his kaftan, beads and psychodelic LPs.

We grew up in the 60s 🙂

On a far more serious note. It infuriates me to hear that hospitals are not willing to fund certain treatments eg Sharon's PET scans. I am no math buff and probably would not understand the results but I do wonder what the % of the health budget goes on self induced conditions

[eveParticipant]

Hi
I often wonder how many people die with it not being diagnosed,if you think the average age is 70,do doctors bother to even,go along the myeloma route???

Young people seem to be getting picked up earlier while older people,have usually broken bones by then.
so is the numbers higher than3000 a year in uk who get this disease???

On lighter note Cannabis is known to be good for arthritic ??? so send Stephen up to the loft straight away

Love Eve

[eveParticipant]

Hi Sharon
Slim seems to be in the same situation as you,blood and urine are showing him going in to plateau ,but showing 80% in bones,on 2 cycle of Velcade,went to hospital yesterday,things have changed again,nurse now says will not do bone marrow until near end of cycle!!!.I asked how are they going to check how disease is progressing???? as it seems silly to go through 8 cycles and not know if it is working or not!!!!
No reply ?"only I will ask consultant"
Sharon ,Slims on Velcade with Cyclophosphamide and Dexmethasone on Trials MX1.2 weeks on 1 week off.injection 2.3 twice a week.
CDT not successful so next route VCD,no PET scann mentioned,but MRI scan next week.
Not due to see consultant until October!!!
What has been your hospital regime??????
Do you feel it is being successful????

Love Eve

[brochoParticipant]

Hi Eve regarding the results following treatment as in Slims case and doctors wanting to wait until the end before doing bone marrow or is it a scan they are going to do? Often the results from these drugs take time to settle so rather than testing several times they prefer to give it time to level out As it is only a few weeks its unlikely to do any harm to continue in the meantime and certainly easier on Slim than loads of repeat bone marrow biopsies love Bridget x

[eveParticipant]

Hi Bridget
What surprises me Bridget is the turn round of what we were told when we saw consultant,I checked about bone marrow every cycle twice,then yesterday same nurse,said in a few months,that,s why i want it checked out.8cycles,3weeks cycle equals 6 months of treatment,Slims just done 6 months on CDT.
I need to know is this the same for other people in Slims position,up to now we have had some very conflicting information
The reason he is having a MRI scan is I asked if the Myeloma has increased in his bone marrow will the pain he is in be extra damage?.

I know you have a lot of experience with this Bridget,as you said a MRI scan is the only way of monitoring your condition,but when I spoke to consultant I was told it will not tell them what is going on in the marrow!!only the condition of the bones.

I will try to find out more about PET scann that Sharon had.

It all just seems a bit hit and miss to me,with conflicting information at every turn.I think I will have to get in touch with Ellane to find someone
who is in the same position.Sharon is at the moment much the same as Slim but the way the different hospitals monitor it is confusing.

Hope your not in to much pain Bridget,and hope they can sought it out soon
Love Eve

[SharonGParticipant]

Hi Eve
Sorry for not replying yesterday but felt really rough, I was ok for the first few cycles, but by cycle 5 I began to struggle especially since they introduced cyclophosphamide at cycle 5. Like Slim I have velcade on days 1,4, 8 and 11 of 21 day cycle with 20mgs of the dreaded dex on the day I have velcade and the day after and 500mgs of cyclophosphamide once a week. Tomorrow is day 11 so my last dose of this cycle and my next cycle will be cycle 8 and my last!!!! Yippee!!!
I have had no bone marrow biopsy, because my consultant believed it would probably be clear and haven't pushed as I hate them!!
I would certainly ask about a pet scan when you see the consultant and I would certainly not be waiting til October!! If they can't bring your appointment forward ask to see the specialist nurse at the hospital. Pet scans aren't used very often for myeloma so not everybody knows about them, but it certainly useful to find out the extent of activity, my initial one showed lots of activity in my spine (no surprises as I had had 3 tumours there!) and activity in my right shoulder, my mid treatment scan showed no activity on my spine 🙂 but still some activity in my shoulder :-S .

I wish you and slim luck
Love Sharon x

[eveParticipant]

Hi Sharon,
Thank you for all that information,have asked about pet scan today,nurse said she would inform consultant,thought it was a good idea,the consultant is very much a bloods man,I get the impression he works purely on results.
Slim has tumour on spine,plus lesions on shoulder blades and skull,they have a pet scan at the hospital !!! so there no excuse.

I was getting concerned that Myeloma is not showing in monthly test if they had not done another bone marrow for trials,to all accounts Slim was starting to go in remission,The Myeloma has increased in the marrow.

I hope you do not mind me using you for info as you seem to be the only one in a similar position to Slim.???

Did you have any radiotherapy for tumours,i was told they only do this if pressing on spinal cord,and chemo does the same Job?
You are getting the same tablets as the trial people,so have you any idea if you will have a maintenance drug if you get the all clear?

May i say you luck very young in your photo,and with your nursing experience it must be more hard,different when your the patient!!!
Love Eve

[SharonGParticipant]

Hi Eve

Yes its very difficult being on the other end!! I am 41, I was 39 when I was diagnosed, thats the hardest thing for me as I have 2 children, 15 and 8 and I probably won't see my youngest grow up :'-( .
I don't mind helping you with as much info as I can give, I did have radiotherapy on all three tumours, however I have some lasting spinal cord compression with altered sensation in both my legs and a few numb toes!! I had some spinal cord compression from the 1st tumour, but it did right itself after, the pain was horrendous before radiotherapy, so I knew what was happening with the 2nd tumour and pushed for an mri scan. It was the 3rd tumour that did the damage as I was due to start velcade on the Monday but the week before my pain had started to increase dramatically, but I thought I could hold out for the velcade to start, unfortunately I developed numbness and altered sensation in my legs the Saturday before, it has improved some, but not as much as I hoped. At least the radiotherapy sorts the pain out fairly quickly!

So if Slim has tumours on his spine be aware if his pain increases dramatically or any numbness.

Love Sharon x

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