[PerkymiteParticipant]

Hi Eva, Sorry, catching up on posts. Sorry to hear of Slim’s predicament.

Why did Slim have to come of the Revlimide? Did he get to the maintenance leval ?

Kindest regards – Vasbyte

David

[eveParticipant]

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!!!!

[duskParticipant]

Dear Eve

You are right to ask questions as you have done. I do not think it a good future for humanity when society starts putting a price on human life. The question is why is there research and money put into drugs and trials when people are going to be denied them based on cost or age etc.

I am so glad for you that your strong stance has helped Slim to buy some time and perhaps improve the time he has to a better level- this is no less than he or anyone deserves.

Now you might understand why I am so questioning of the health system which uses the high cost of the cutting edge novel drugs to deny their use more freely in a disease like cancer- it should be a clinical decision with each patient, not a NICE one, to use any regulatory approved drug. I also do not accept doctors always know best, they do get things wrong.    You have shown that sometimes another doctor can take a more helpful approach even in a disease whose roller coster journey we are all acutely aware of.

[eveParticipant]

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.

[GillParticipant]

Hi Eve and Slim I don’t log on very often and I was sorry to hear that Slim had been so unwell, but things seem to have improved a great deal since you changed hospitals.

None of us are oblivious to just how life threatening mm is, and I think the quality of life is paramount.

As you know Stephen died in 2012 aged 57. Up until a few weeks before his death he was still enjoying quite a lot of things, although it was obvious that his body was slowing down. His death was still a shock. He died 4 weeks after we had been told he’d got a couple of years left.

I know we all have to plan ahead somewhat or we would never make it to a hospital appointment, dental check, we could even run out of food! But I still think there is a place for Carpe Diem, seize the day. Another way to say this is

Yesterday is history
Tomorrow is a mystery
So live for today

I don’t particularly want to live so long that I am a dribbling wreck but I hope I live long enough to see this B*****d disease kicked into touch and vanquished forever.

I hope Slim continues to feel a bit better and wish you both well.

Love from Gill xx

PS I am sure I’ve said this before but here goes anyway. My darling Stephen’s last words were “Gill is this it? and please don’t give me any Bulls**t” he very rarely swore but this still makes me smile.

I did not need for him to proclaim his love etc. (I know I was adored)

Good luck Slim xxxxx

[duskParticipant]

Dear Eve

I do read the Myeloma Beacon and yes have read Arnie’s post. I prefer the Beacon as it is very informative indeed.

I think your notion of  ‘coming out of the closet’ differs from mine and you might not take me seriously but I can assure you most do in the realm I operate in.  Some people, like myself, do not seek to focus on their personal picture- that I can do well enough with clinicians and friends/family.

I do not seek the re-assurance of others  but am concerned as to how human beings fail orther human beings- in our case the drug company shareholders/ directors, the government, NICE and, to be blunt, sometimes our consultants.  Focus on personal wealth and security of ones own position blinds most of us to the cruelties that make resources the excuse for inaction when action is perfectly possible for thooise determined to act.

I do realise the complexities of myeloma- more than you might imagine as you are very clued up I see. I am in a very different place to many posters I have looked at on this forum.  As to vitamin C these things go in and out of scientific fashion and I take the view that one should do what feels right for you- no doctor will pursuade me otherwise.  If someone wants to try out an ‘alternative’ treatment and their clinician says no it is up to the patient to take responsibility for going against the clinician’s view. Although I take a much more ‘measured’ approach to unclear therapies for untreatable serious illnesses, I can understand how desperate and vulnerable people become that they will try anything when the odds are stacked against them. I however fear their being ‘duped’.

You are a strong woman Eve, a credit to your husband and family.  I too am strong in many ways, but even strong people have their weak points/ moments. I want the best for everyone, knowing there is no single answer for everyone who has MM and how cytogenetics and clonality, with drug resistance of certain plasma cell clones, creates a unique picture in terms of treatment outcomes. That is a huge challenge for the clinician- who really needs to be a scientist too.

The challenge remains for treatment. Any one of us can only seek what seems possible for our needs / situation and should be alllowed this.

[eveParticipant]

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

[eveParticipant]

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

[eveParticipant]

Hi Everyone

Thought as I am on would keep you up to date,

Slim has had his first month of treatment,after being told there was nothing they could do!!

Well we have had a good month,the weather in are little corner of the world has helped,most days out and about,lovely to see the daffodils in bloom,the sunshine helps even thou the south wind is bracing,very unusual a south wind this time of year,but we are making the most of it.
Managing are once a week visits to the Marsden,So all good,bloods in general have improved,holding his own,so life is GOOD!!!!!, Eve

[jmsmythParticipant]

Hi Eve

So glad to read of your news. I hope it goes on for a long time. When does your daughter arrive. Something to look forward to

Best wishes to you both
Love Jean x

[eveParticipant]

Hi Jean

She is coming the start of NZ Easter break with Kiwi kids,husband arriving on business a couple of weeks late,and yes something to look forward to,the whole family back together again for a short time.
So all good at the moment!!
Sorry to hear about the dreaded shingles!! So so painful even when spots are gone,Slim has been on the anti viral treatment even when not on Chemo,his immune systems not great,plus has not had chickenpox,so took no chances. I had it a few years ago,and the coward I am I found it so painful!!!

He needs a holiday away from stress,treat him to a cruise Jean .love Eve

[jmsmythParticipant]

Hi Eve how long since you have seen the family. I’m sure You are both excited. Shingles are awful. He says the pain from the spots has eased a bit but back pain is terrible. (He had been free of it form months)

We have a cruise booked for 8 May. Don’t like booking that far ahead but it gives Frank something to look forward to.

Long May Slims bloods be good
Jean x

[GillParticipant]

Eve I had chicken pox aged 28 I was delirious and could see spiders climbing up the walls. The pain was unbelievable. When my kids had it as children they were absolutely fine

My daughter was terribly ill when she caught measles and was close to being hospitalised but we were told not to have her vaccinated because she suffered from febrile convulsions She grew out of them thank God

I do hope that Slim continues to improve

love from Gill xx

[GillParticipant]

PS great news about your daughter. I don’t suppose you will have time to post with your visitors are with you. So post nice long message after they have gone xxxx

[DizzylizParticipant]

Hello eve,

Really happy for you and slims continued good results, only popped in as I haven’t been on for a couple of weeks, kevs had an unexpected hospital visit! High temp: and very bad diarrhoea which we think is related to his treatment revlimid as this is getting to be every cycle, so now the hospital are keeping a close watch as he is on cycle 14 they say the longer he’s on rev/dex the more likely he’s gonna get more side affects, and we’ve all,grandchildren too have had some sort of flu’ey bug! But fingers crossed alls well and kevs enjoying today in the garden and hope you and slim are doing the same.

I bet your both looking forward to the family coming!
Keep well eve & slim love liz & kev xx

[Author]

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