Hi Jean and Maureen
He has just rung me to say all Chemo stopped until we see consultant,I was expecting it to stop.
Now its when do we see consultant,I was never happy about the CDR as when he was on CDT the Myeloma increased!!!!It is a spin off,of Thalidomide,plus known to cause clots.:-(
With Slim only getting 6 months remission after SCT,he is just buying time now very much like Dai,but if he does as well as Dai,it will be worth it.:-S
We have the summer to look forward to,when it comes, how are things with both your hubbies????? remember to look after yourselves ,it takes more than a good nights sleep to stop fatigue, Love to you both.Eve
Hello young Tom,
Good luck,do they provide meals at the hotel!!!!! what is the food like or is the effect of chemo playing havoc with your taste buds yet!!!!
Best Wishers.Eve
Hi Everyone
I think Andy lives for the day,he is home i had chat with him on facebook.
Vicky,go for it why Colin is in remission,we went to France before being cleared,then a cruise,just on the discharge date,then New Zealand,so just do it.
Slim got less than 6 months remission,so get your skates on girl.
Insurance was expensive for NZ but for cruise 1 week about £150 for both of us.Did not bother with France because we took Motorhome and know France well.
I cannot see anyone being insured when not in remission,!!!!!!!!!!!!Eve
Hi Dawn
Slim ,is the same has IgG bence jones kappa lightchains,and some were along the line now showing,IgM bands,all this I have had to find out myself from paper work,I ask questions,get told its complicated,and told not to worry:'-(
The SE work with Kings,I have toyed with the idea,of asking a second opinion,and going to Kings,the feeling is we are just going through the motions,Slim cannot get on trials as no way to monitor Myeloma,Bloods Kappa lightchains,do not show true reading,so BMB every 2 months.
Slim,s main problem is treatment,the CDT pneumonia,caused problems with his lungs,history of thrombosis in family,plus kidney damage,so not happy they put him on Revlimid,but was told in a polite way,no choice.
Even his bloods readings are not right,the problem is platelets have never risen to dizzy heights,at the moment 56 ,going down weekly,My GP rang last night and asked who was monitoring them,the answer is me!!!she trust me,not due at hospital until 5 for bloods,8 for Zometa and 2nd cycle of Rev.
Slim is 68 but use to be very fit,and I know the thinking,well he has got to 68,but does not matter what age you are,everyone wants to live.
I did some reading on curcumin,there was a young girl in the states refused to go down the chemo road,found a oncologist who agreed to monitor her,similar diet basic alkaline ,curcumin,plus different vitamins,slowed Myeloma down,but did not stop it.
No one has used the word refractory,but not holding much hope out with Rev,when Slim was on CDT 6 cycles it increased to 80 % bone marrow.SCT after 100 day BMB,he had complete remission,l asked for another BMB at 6 months,it was back at 10%last BMB 30% should have another BMB in 5 weeks,not holding my breath.In the mean time the Rev is knocking his immune system plus kidney,s are showing a rise.
Infections are the biggest worry,at this stage of the game,I am tempted to ask for anti biotics along side chemo,he has clexane as normal part of treatment.
Dawn you do not say how,well you are,or what side effects from treatment,I can only imagine,the effect of a tumour of skull,Slim had lesions on skull,the fact you got 4 years must be in your favour,at least for more remission,plus getting treatment that is new to this country.:-) I will be watching this space,I do hope you will let us know how it is going.Eve
Hi Trish
I would agree with David,tramadol questionable ,some times I would like to put consultants in the same position as patients.:-P
I struck gold by changing my GP,I just wish I had the same relationship with Slims consultant:-) ,
Lets hope its over sooner than later Eve
Hi Trish
Well lets hope its over and done with soon,no more pain,that Dex has a lot to answer for.
Will they be able to do key whole surgery,or will they cut!!! it amazing what they can do these days ,lets hope its,done and dusted as soon as possible.
good luck Eve
Hi Annet
His bloods might be fine,but they are not telling you about the fluid on the lungs,it could be a number of things,have you got a contact number for the hospital,if you have ring them,every cancer patient should have one,they will give you advice or tell you to bring him to A&E,either by car or ambulance.
you do not say were the pain is,or what arrangements are being made for your Dad nearer the time,have you any contact with district nurse!!!!! if you hve ring them,at this stage you should ,have a palliative care plan in place,and your dad should not be in extreme pain.There is always something stronger to take,40m isn,t much in late stages.
It is exhausting and emotional ,I can only say,when i was going through a bad time with hubby,I cat napped when ever I could 15 min works,only way to cope,if dad sleeps you sleep.Eve
Hi Maureen
Happy Birthday to you,it was lovely for your family to come over,not a bad thing to be emotional,helps the body stay calm,instead of a lot of anger.I find a few tears help at times,
Well my girl how does it feel to be sixty,I found it very liberating,there is a saying,you are as old as you feel,my advice wake up feeling 21 again,even if the body says different.
Good to know you enjoyed your day.Love Eve
Hi Rebecca
Everyone must do what s best for them,I think on here everyone handles it different.:-)
If you go for SCT,you will not be able to hide it,your daughter will forgive the lies,just as you would forgive her.
We found once we had the big C out of the way,after awhile it calmed down,they trust me to tell them anything important,and they just get on with there lives.the way it should be.
Same with extended family and friends,They ask how Slim is and the answer is fine,although at times he looks like a coffin dodger.
My advice Rebecca your kids will forgive you,and tell you never to do that again,and make you feel like a 5 year old.Love Eve
Hi Dai
Well may be as the north are catching are southern weather,may be the inefficiency of the south is getting blown with it,and telling porkies a bout it as well,I hope they gave you a butty.;-)
Seriously Dai,its soul destroying,as for porkies>:-( well take them with a pinch of salt:-P ,I think the lies are the worst,why not just admit,they forgot all about you,pharmacy first,and lack of someone chasing up the prescription,
Welcome to our world.Eve PS you did make me laugh.
Hi Dai
Is that part of the MUK5 trials???
If it is I would be interested,to know about it,Slims not be eligible as they have no way to monitor Myeloma,plus Ellen posted that there will be no compassionate way along side trials.
Company stated that it would have to be paid for!! plus it has not gone regional yet.
Dawn, Marsden is London,but I noticed you said you moved for treatment,understandable as the Royal free is the only one that deals with Amyloid. If this is the case,do you find,you have more choice of treatment because of it.The reason I am asking,is lack of choice being regional,my husband has had CDT CDV SCT now CDR all within the space of 2 1/2 years and will be having a BMB every 2 months,as only way to track Myeloma.Eve
Hi Sarah
Just to wish you the best,6.6 million enough for two SCT,will they all go back in,or can you save some????
Hope you all enjoyed your bake off of orange cakes, Eve
Hi Dawn
Well it looks if you are a front runner here,I can only think of one person on the forum who might be up there with you is Andy,I think they have thrown everything at him.
I was interested in the fact that you took curcumin for the years in between remission,,never heard of the budwig diet,but the curcumin. Seemed doable. I find it very hard to get my husband interested in most foods that might help his situation,but I do feel there should be more research in to foods.
My own view on is the younger you are the longer it takes to break your immune system,so by using supplements,you are helping to maintain your immune system,in my husbands case,although use to be very healthy at the age of 68 and treatments not halting the Myeloma for any length of time,his immune system is slowly breaking down.
Dawn you are doing very well,amazing so,I hope the next regime helps,would like to hear more about the budwig diet,although at the present time,I just want my husband to eat.!! love Eve
Hi Tom
Yes I knew you were coming back,I always look in facebook as it is away of keeping up with my girls and family,sad really but everyone leads such busy lives.
Slims not great,hovering should I take him in or should I dose him up,A&E I dread feel if I have to fight my corner,so political,so arranged blood test today,have results tomorrow,see my own lovely doctor,and will abide by what she says.:-)
So glad you had a lovely holiday,start booking the next one,as for missing anything,it is new people joining,remember Gill did" who the hell are you",well I feel like saying, I would know who the hell you were if you put a picture on.,but I suppose that,s very rude.:-P
Any way Tom lovely to have you back8-) ,Min and me were wondering how many Russians got Myeloma,!!!!!,but as Min said they died of liver disease first.:-P :'-( >:-( Vodka Love Eve
Hi George
The person you were arm wrestling with,I hope you bought him a pint,in away he has done you a favour.Eve
