Hi Karen
A warm welcome from me as well, I am a carer for hubby.
Hubby diagnosed in February 2011 after back pain became major problem in July previous year. CDT then Velcade SCT in May 2012 ,.waiting on results to confirm out of remission .
The last couple of years have flown by and our world has got a lot smaller,but cannot complain we have spent a lot of years travelling, still looking forward to being able to do it again. Eve
Hi Maureen
So glad to hear the news!!!
It is important GP know they are getting it wrong!!
Yes you can not do it all,only your best,this Myeloma can take a carers health away as well ,you are in for the long haul,so allow yourself some down time.
I am so glad Ian is getting to gym,see if they have a small foot cycle he can use,even weights to build muscle in upper torso,this will help in his recovery,as weather improves make sure he is taken into an open area even if he is in bed,look around you to see what's possible.,young Tom would call it pro active I would call it the norm,you have the best interest at heart for Ian.
Life might end up different,we can not see the future,but we can adapt with it. love Eve
Hi Christine
You say his bloods are ok except he is anaemic ,how are neuts and platelets surely they are low.This is what you would expect??? The reason I am asking,is Slims blood results have always been good, so they have not been able to use these as a true marker for his condition. This is why he has had lots of BMB.
You say he has not had a BMB for awhile,did he not have one after CDR and Velcade to confirm Chris,s Myeloma was reduced enough for SCT.???
You do not say what strain Chris has,for example Slim,s is IgG Bence jones kappa light chains, it helps to know,to research it.
As you say Chris is young healthy with no bone damage,this is all in his favour.
Concerning your sons exams I would let the school know just in case it has any effect on him.
Last Slim has had the nickname since joining marines,he use to be 6ft1in and weigh exactly 10 1/2 st,lost 5inches in height,at worst weighed just over 9 st. Now 5. 9 height creeping up to 11st.,this roller coaster has a lot t answer for.Eve
Hi Christine
SCT are being done,if he can get his Myeloma down again,and they can produce enough stem cells it has been done.
Look at some of Marie's post from Kent,her husband had another SCT !!!!
I know the figues seem awful,Slim had 80 percent in BMB after 6 cycles of CDT,Velcade took it down to 0,knowledge will see you through this,learn all you can,ask Ellen questions.
At the moment you feel,dreadful,sometimes doctors fail in explaining things to patients,plus you hear prominent words,so do not take on board the rest of the conversation,
Deep breaths,positive thinking,list of questions,be pro active, Love Eve
Hi Christine
My names eve and my husband is very much the same, I know how you are both feeling we are waiting on second BMB,first showed. 10 percent .Slim had his SCT in May he only got 6 months after 100 days,he had trouble getting his platelets up did not connect the two things.
Chris should be eligible for Muk 5 trials had right chemo 1 relapse ring Ellen she should be able to tell you plus give you info.
Think positive he,s young,so possible another SCT, in future , I know it's not what you want to hear,but Chris is the patient he needs you to be strong,ring Ellen today even if its just to get it out of your system.
Be positive, I know how you feel. Eve
Hi Maureen
Well worth the phone call,everything helps.
Slim is not on treatment,that is the annoying thing,because the only way to tell what is going on is in BMB,had one in February which showed 10 percent ,another one 7 May,we are waiting on results.bloods showing small changers ,but not drastic,on a personal level I have learnt to go by my instincts ,so when the results come back I am expecting the BMB to show a rise.
The question now is what treatment plus some questions to be answered!!
Only a couple of days to go for answer on BMB then see consultant on the 24 May.
Good luck for the future,if things need adapting for Ian I would start getting the departments in place,I do not know if you are aware disability gadgets you get VAT relief, I was not aware when I had a large shower fitted instead of a bath!!! Saves some money. Love Eve
Ps had to edit my I pad is having a mad moment
Hi Georgie
Welcome to the Myeloma Forum,I was going to say it,s not a nice place to be,but it is,and you have come to the right place for support.
What your consultant is telling you is true,chemo will do the job,radiotherapy is only for people who are in danger of having more damage or the pain becomes to much .
If you want to help your Dad,get some booklets on Myeloma hospital or Ellen,and start learning all about it.Ask any questions on here and try to get your Dad interested,but it is early days and he is coping with all he can at the moment.
People will tell you it's do able,patients carers we have all been there!!!
Can I give you a few tips.
Organise your Dad,if he needs pills for depression ,why not,loosing his wife then Myeloma is enough to depress any one,what is one more pill with all the toxic pill regime he is on!!!
My husband takes ant depression pills,to sleep relaxes the body,it achieves the result!!!
Apply for any money your dad is entitled to, Mac Millan have a help line,blue badge,these things will make life easier,will help in mobility,house plus give your dad the knowledge that he is going to make this.
Try to get your dad to come on here,it would be the best tonic to know there are lots of men on here in the same position,just at different stages,when you first start chemo and it kicks in 2or3 cycle it's hard,a massive learning curve.
I am leaving space for all these men on the sit to give you advice,as I am a female carer,and see it in that perspective .Eve
Hi Rach
It's hard but do not panic it takes time plus blood test to see if its on the rise,2 sounds a nice number,has your mum been on medication or been off colour,it all effects the blood results,its never just about blood.
I also think its a natural reaction because your mums had a SCT its not the end of worrying ,I some times think its worst as before you have a positive frame of mind,your mum is going to get through this attitude and its a good thing,its got her this far!!!!, then it takes time to wind down and stop worrying,look at Tom very relaxed but still worries when the bloods come round.
The time to worry is when there is a steady increase,enjoy and plan what time you have now with mum,do a spar day,hit the shops,show mum she's the best mum in the world. No one knows when it will come back.Eve
Hi Karen
I am so sorry to hear the outcome of Myeloma,that should never of happened ,we need to hear from people like yourself,people who if they had been diagnosed earlier who would be in better health as less damage would possible not have happened,I think you GP owes you answers!!!
Do you remember the name of the private osteopath ,may be he would be prepared to explain his part,as I can only assume after telling GP you needed a scan,he stopped treating you!!! If he did not you are less likely to get information from him!!!
This needs to be taken up by Myeloma UK for every patient on here who feels that if the doctor had diagnosed them earlier,they would not be living with so much damage to there bodies!!!!
I still stand by my statement ,if the doctors felt they would not be drawn in to litigation,we would have answers,plus knowledge would be shared,and the future generation of people who get Myeloma will be diagnosed early.
I know it does not change your position or my husbands,we were lucky he uses a wheelchair only when he can no longer manage to walk which is,increasing. The Myeloma is back ,and going about its business in his body. Eve
Hi Maureen
I am glad Ellen could help you,it is nice to be able to ask questions and get a different view ,most people on here are Myeloma patients or carers,then family members who need answers.
When Myeloma is first diagnosed,you read the leaflets and think how an earth are you ever going to understand any of it,specially medical jargon, you end up on the biggest learning curve of your life,there is no teacher!! You have to be pro active on this Myeloma roller coaster,the more you learn the better you can help your partner.
Not knowing the system in France it will be a bit hard for people to help with the medical side,but there are a few people on here who have posted in the past,who may be able to help.
We can help to support you,keep your spirit up when you feel down and share with you some of the things you cannot learn from books,there is so much information goes through this site. On the plus side we are all on the same roller coaster no matter which country we live in. Eve
Hi Maureen
Welcome, may I first suggest Ellen Myeloma nurse on here can help,send EMail or phone.!!!
I do not know the chemo combination ,so cannot comment, I do know he should not be in pain,but you do not say what combination of tablets he has to help with pain,plus what damage he has in bones or if pain area is we're lesions were,so it's a bit hard to help.
My own believe is with an illness that causes chronic pain because of damage to bones,should be treated with strong pain medication until the area the pain is in can be treated.
I know when I have been in France it's hard to get non proscription drugs in any quantity at a chemist, so your first port of call has to be his own doctor,for pain relieve,if you consider it is Myeloma related then speak to consultant.
I hope Ellen can help you,let us know how you get on. Eve
Hi Dai
You have a good point with Muk 5!
I asked about it,consultant said Slim had not had Revidimide so did not qualify, Helen has not had Velcade so questionable!!!
But I am making further enquiries
The reason why is when Slim had CDT over a period of six cycles it had no effect , the myeloma increased to 80 percent, now they are talking about Revidimide which based on Thalidamide.
Helen it is worth asking if you come off Myeloma X1 trials what are you options!!!
I know it's the last thing you want to hear,as you have to adjust your mind set to new drugs,but I think it is worth asking and exploring. As you can always go back to Velcade at a later date but MUK 5 might not be there later. Love Eve
Hi Maureen
Ring up Myeloma UK speak to nurse and they will send you the package as many as you want to take into GP.
Wishing you well and it's good to know you have some support . Love Eve
Dear David
Your posting jogged my memory one we have stayed in the Union Jack Club,did not realise it still existed ,mine was no honey moon, ( dirty weekend) springs to mind,still waiting on honeymoon,Slims not a great one for surprises his excuse is I always find out about them!!! Two a few years ago we spent time looking for Slims fathers grave,because he fought and died in the free Czech army,found his grave in St Omer .
You missed out on the garden of England so beautiful at this time of the year,maybe next time.
Thank you for the memories and looking forward to seeing photo,s.love Eve
Hi Ted
Blood test do vary,you need to take certain blood test and urine test to suggest a blood disorder .
When you feel ill a general blood test is taken looking at different functions,doctors usually have blood test on a chart in there computers so any change stands out clearly. These should alert doctor to changers within the body,here is an example
GFR 55 in March
GFR 40 in December this shows kidney function dropping,in theory this should be picked up and rechecked to see if Kidney function keeps dropping.
Other blood test should be taken ESR,CRP which are test of inflammation .urine also should be tested,if readings on chart are still in decline,they know with results plus other factors general health or in Slims case,sickness,weight loss,general colour,problem with bones..
All indications show problems of disease,but the only way to confirm is a BMB. If it is picked up very early,then less damage takes place within the organs and bones.
The bloods basically show markers for a GP. I believe very rare cases are hard to define but other symptoms should put any doctor on alert,you do not go to the doctors unless you are I'll, so patients should be listened too.
Next time you go to your doctor,s Ted ask to look at your chart on the computer. Love Eve
