Hi Terry
My husband has been on Claxane off and on for a number of years,and seeing the consultant after he had a blockage in the artery,and had to up had to up his dose from 40 to 100,he made a remark about being fed up being a pin cushion!!!
The consultant said he could have RIVAROXABAN but had to make sure he took it daily as it worked only for 24 hours,I asked all the usual questions,has it been tried and tested? How do you measure if it is working ? How long has it been around ?. Slim was having problems with low platelets but still had a very large blockage in his Artery ????. So you can see my concern.
Any way,he started on RIVAROXABAN , went down with two sepsis infections in a month,his platelets were non existent,although he had GCFS injections,plus bloods and platelets,I did wonder if the RIVAROXABAN had not helped,the first thing the did was take him off RIVAROXABAN and Chemo, I did ask an important question at this time!!!! Had RIVAROXABAN ever been used on people who like Slim were under going intensive treatment with chemo who had low platelets????,no one could tell me?????.
I know Slim is unusual in its rare for someone who has low platelets to have a blockage in an Artery from hip to knee!!!,plus they now say his body is not producing them!!!!
6 months have passed since all of this,he is now being treated with Chemo,with platelet support,no Claxane,no Revaroxaban,holding his own,with platelets now in double figures,might not sound much,but a vast improvement.
You must use your own judgement on medication,as we all know these chemo,s bring there own problems without adding more to the mix,.
This is just Slims experience!!! And we may never know how or why the platelets became non existent,he has improved and continues to do so on Chemo. Eve
Hi Maureen
We will not know for some time if treatment is working,but in general is bloods and health are a lot better,plus he has just had a chest infection,but held his own with antibiotics ,so to me that is a measure of how his immune system is a lot better. His pain levels are better,you can tell just by his body movements,so I do think he is responding to treatment.
Slim never had many side effects on Velcade,and responded well last time,so it’s all good news at the moment,it is a bit of a worry that Nice are instructing consultants to decide the medical evidence by the imposition of socio-economic criteria,effectively to the great detriment of all senior citizens!!!! But we will see what the future brings.
It is amazing that Myeloma UK is based in Edinburgh,and you do not have trials there,or am I mistaken in this. Eve
Hi Maureen
Make sure you get away for a holiday before Ian starts treatment??
I often wonder about haematology consultants,how much they keep up with things,I suppose we are lucky to have Myeloma UK because I get a lot of information from the news letters that they post also follow them on face book,so it saves me often looking for info,and we have Ellen and Maggie for info.I suppose you could always get in touch with them and ask for an info sheet on it,
If you look into the video,s on here,there is info on Imagining,but in the circumstances of Ian having many months with no treatment!!! I would have thought they could at least do full body x rays and compare,!!!,they tend to use PET scans to track Myeloma,but as quoted to me (it will not tell you what is going on in the bones )
Will Ian be going on trials or just CDV!!!!,because there are trials !!!! Again get in touch with Ellen and find out if any trials near you,or just put in trials at the top of the Page,there is a big section,telling you were they are all over the country.it is worth asking if I am correct it’s randimised choice Velcade or a new drug cannot remember the name,as Slim did not stand a chance to get on them. I think Wendy tried for it but got Velcade,but Debra Bones got the new drug!!!!,a little unsure here!!!!!
I hope you get some answers ????as I think you both have had a bit of a rough deal Ian in hospital for a year!!!,you need to know what you are dealing with.Love Eve
Hi Maureen
Glad to See you managed not just a break,but a posh one lol.
Glad to see you posting again Eva,you must feel down not being in your own home,B&B plus hospital,is no joke,I suppose it’s the only way forward,will you go straight into another SCT from treatment!!!!,which hospital are you at in London!!!
I hope you both Ian and Eva find the treatment easy going,either in Scotland or London. Eve
Hi
My husband has been on Zometa for 3 years plus Ad Cal ,I can only tell you,he has no side effects at all,he did need a tooth removed,so had it removed. In hospital,as dentist prefer hospitals to deal with it,no problems at all,there are a small percentage of people who have problems,but you have to look at the bigger picture,Myeloma does tremendous damage to your bones,and Zometa has proved how effective it can be.
Usually treatment is started not just on percentage in bones,but extra damage EG bones!!! It’s your husbands choice!!! But he is young,and SCT offers a chance of more remission,and possible an Allo SCT.
You need to get in touch either Ellen free phone number top of this page,she will explain send you booklets,you both need to be well informed before you make decisions
Myeloma can be treated but not cured,but you can have long remissions ,so learn all you can.Eve
Hi Dusk
Can I ask you a nice straight forward question????
Have you started treatment yet??????
You have one thing wrong about me dusk,I am a desperate vulnerable woman,who feels like screaming at the moon,often drive along the road with tears streaming down,for things I’ve loved and lost,just like most people feel on here,that’s how we have become cyber friends.
If people feel the need to try a different approach,so be it what ever floats there boat,on here different ideas are often the subject of postings,and something’s help specially during SCT,everything is worthy of an open discussion .
Looking forward to your views as you start your roller coaster journey.Eve
Hi Graham
I would be lost without having my husbands blood results,they give so much information to his general condition,and show improvements or any condition that needs to be watched.!!!
I also have results from any scans that have been done,I think personally it saves the consultants time,and you can ask questions on things you do not understand,which in it,s self saves a lot of worry!!!.
I usually ask the nurses for the blood results in clinic,but if you cannot get them,go to your GP,they can go into the hospital system and can print copy for you.hope this is helpful,also your GP should be fully informed of all procedures and results by letter.
Something has gone wrong with this procedure if you cannot get results.Eve
Hi Gill
Lovely to hear from you,I know you are coping!!,you made me laugh about your adventures to France,even if we do not like it life goes on,people seem to think it should get better after a short time,the first year is a challenge,the second year reality sets in,but saying that you seem to be facing it all head on,my admiration of how well you are coping,goes out to you,the offer is still on,if you want to be 15 min from Dover when you start your journey to France!!,!
Well the scan results came by post,must say this new MRI Scan has brought me some peace of mind,some times I think doctors do not understand what it’s like when the only way to tell what’s going on is a BMB,so that’s all good even with the good and bad.
The difference in Slim is very noticeable !!!this Roller coaster has lots of highs and lows,but I am just grateful he is on treatment and been given a chance,at the moment he seems to be responding well in himself,which is all good.
The journey was not to bad yesterday,started off at 6.30 am made it for 9am,and we were on are way home at 1.30 pm,I would rather hit the rush hour in the morning than in the evening when it’s dark,.
Lovely day today,going to get ready and take Slim and the dog out for a good walk a long the seafront,and look at France with envy.Love to you and the doggies Eve
Hi Dick
Try to think of it as major blood surgery!!! Give yourself three months,then think the next three months will see you responding well,3 weeks!!! What the hell do you expect!!! Lol.
Seriously some people take a long time others don,t.i think guts and bowels are the last to improve,you have age on your side,so don,t despair make the most of being looked after.Love Eve
Hi Dusk
I knew you would come in on this one. Lol
May I suggest you go into the Myeloma Beacon and read opinions a man called Arnie who is a MD with Myeloma,who is nearing the end of his roller coaster ride,well worth a read,he puts the emphasis on what treatment that is available,plus gives his opinion on trials,it’s about drugs and not him,
I still do believe the first consultant gave us what is available to him!!!!!,I think in the case so Slim,he is unusual as has been stated many times,but treatment is the same no matter what.
Years ago a consultant did have a lot more power on what drugs could be used,they do not now!!!
NICE should be held accountable for there decisions,about available treatment,but are they there for the patients benifit????? Or there to budget the money concerning drugs for the NHS???? Next question what can the layman do about it?????
To me it seems sensible for a consultant and patient to choose the treatment!!!! Because going through the treatments that NICE offers,might not be the correct treatment for the individual,as Thalidomide was the case with Slim,every Chemo weakens the immune system,plus causes other problems,plus in some cases extra cancers,plus all the money spent on treatment that was unsuitable ,the way forward must be to define what Type of Myeloma before starting treatment and treating accordingly.
There use to be a big thing about vitamin C helping Cancer patient in the form of injections,and recently the is testing going on with acid killing myeloma cells,some people in America have regularly injections of vitamin C along side treatment,the drug companies will never do research into this as they cannot patent it,and there for make a lot of money,the NHS saves a lot of money by providing patients for trials the patient is a willing participant as they have a disease that is incurable plus they want to live.
Myeloma UK work hard at promoting Myeloma,figures show myeloma patients in general are living longer,but there are a small portion who do not respond to conventional drugs,with no hope of trials,no hope of new drugs because the companies do not want bad statics with the start of new drugs!!!,these are the people who are best to try them,as all hope fades!!!!
I do still think even with all of the above,Slims consultant did the best he could with the drugs and knowledge he had,as for why no more treatment!!!!that is a question I will ask,I do not know if I will get a correct answer!!! Because I think it comes into the range of policy’s ,or in other words very political,and most doctors just want to be doctors not politicians.
Would live to hear your comments!!!!,I think you still have to come out of the closet to be taken seriously,no offence lol.
Hi David
Slims platelets never reached dizzy heights after his SCT,then the myeloma came back after 6 months ,so he went on CDR,,at the time no choice part of NICE controls with drugs,I was against this at the time because Revilimid is a cousin of thalidomide and during his 6 cycles on thalidomide his Myeloma increased to 80 percent in bones plus he had mass blood clots in lungs,but the consultant said I should not make the same judgement on Revilimid !!!! Hindsight would be wonderful!!!!
He had 4 cycles of Revilimid ,platelets and general bloods taking a battering,although he was on 40mil preventive Claxane,he had a blockage in his artery from hip to knee,when he recovered went back on CDR,but was taken in with a sepsis infection unknown,released but was taken in again with another infection,on and off CDR,bloods taking a battering.he had a BMB and Myeloma was down to 5 to 10 percent patchy!!!,.
The consultant said we had to wait fro another BMB and do nothing and let the bloods recover,he was not worried about platelets,after Christmas,we had the results of another BMB myeloma had gone up,platelets had not recovered,and bloods in general not great,then the news,and although we new it was not good,we did expect to be offered some form of treatment but everything I suggested,he said it would do more harm or Slim was not eligible for trials as could not meet the criteria,said no point in applying for treatment on compassionate grounds!!!
They would still support him with bloods and platelets,he said the whole team could not come up with any suggestion!!!! Reading between the lines,go home and die,seems a bit harsh to say that!!!but you know me David,do you think I would settle for that,and I know Slim,the first thing he said is I am not ready to die!!!
We now go the Marsden 100 miles there,100 miles back,long journey in the rush hour on M25 but managing it.
Slim is on CDV second generation,but the main thing he is supported by platelets before injection,also steroids help to produce platelets,they give platelets anything below 30 were the other hospital was below 10 !!!!
He has had the new MRI Scan ,that should give us a better idea ,I have been asking for a PET Scan because there was no way to monitor Slims condition,refused many times on the bases it will not tell you what. Is going on in the bones!!!!
Well second opinion,Faith Davies,no promises,very straight! I like her.
Slims bloods have improved,no side effects from Velcade,more energy from steroids,less bone pain. Must be good just on that bases ,he feels better,given him hope for more time,daughter coming home from NZ.
One must ask the question!!! Was it because a whole team could not think of any options!!!!! Was it Slim is 69 and no longer contributes to society,does not matter that he served his country for 22 years.!!! Or was it money!!!!
Slim has been on trials and contributed 8 BMB plus dater as they tell me he is unusual, I think he is worth a bit more than being written off. Love Eve
Questions to be asked!!!!
Hi Julie
My husband is on fourth line treatment CDV. It’s exactly 3 years since he was diagnosed,I often wonder if he had not had a SCT would he have had a longer remission!!!!!
So I suppose we all do what ifs,hindsight is a wonderful thing,just wish I had the gift.
The problem is often the type of Myeloma and how aggressive it is,plus the fact that the Cancer evolves with the treatment,which can cause other problems,even the experts cannot predict how long a person will live.
When you get into the realms of fourth line treatment ,you know you are just buying time,but they have learnt a lot from trials,and just may be because of that new treatments might come on line that will buy more time,this is the only thing you can hope for.
So forget about will it or won,t it buy more time,just enjoy this extra time you now have.Eve
Hi Jean
Well we have just passed three years,in this Myeloma Bubble,and the Myeloma seems relentless if I clocked up how many hours have been spent driving,waiting for treatment and every thing that goes with it,I am sure it would add up to a good portion of those three years,yet it’s time we are trying to buy,a bit like Dai trying to get to milestones in his life.
daughter coming home in May from NZ and his birthday November.
The treatment is giving him some energy he has gone from hating Dex to looking forward to it,Velcade he does not mind as very little side effects,so even if we do not get the right result he seems to be benefiting from it.so that’s good news.
So glad to hear you are enjoying life,
Specially for you,I would not have let Frank watch the football,(Facebook) lol.love Eve
Hi Jean
You will never get away with Gushiness at Scrabble!!!! Miss playing but did not like the new format and I tend to use an I Pad,also lack concentration these days,so it’s jigsaw puzzles at the moment,it’s something we can do together.
We now go to the Royal Marsden in Surry,bit of a journey,but easier than going to central London.Started treatment last week and going well,Velcade was good for him last time.
So glad Franks doing well,have you been on another cruise or is that an old picture????
Make the most of it Jean,enjoy lots of holidays,and your lovely family.Love Eve
Hi J
Welcome to the site,if I was you I would put your post in general,as people do not look at carers very often,I post here as I am a carer and at the moment my news is not good and I am aware,some people do not want to hear bad news!!
Now to you J,it’s going to be a hard roller coaster ride no matter what your Dad decides,you will not get any one trying to change his mind,they will tell him the facts,but if they say once they have his symptoms under control the future looks good,then that’s what I would impress on him.it sounds if they are not writing him off,so that a good,I have sen many patients in there eighties having treatment,plus there was one man who was 90,he did not look it and was very trendy,it’s more attitude than age I think.
If he decides not to have treatment,you have to respect that,it is not a decision he has taken lightly,for someone to choose to die earlier than he would do takes a lot of courage,others have chosen to do the same. You do not say if your mum is alive,that is the person who would have the most influence!!!
I hope no matter what your Dad decides that you learn all you can and be there for your Dad.Eve
