[eveParticipant]

Hi Ozzy

Just a quick one about Claxane ,There is a pill I cannot remember the name,Slim used to be on it,and I think Andy is on it,does the same Job,so might be worth asking consultant about it,Eve

• This reply was modified 10 years, 9 months ago by  eve.

[eveParticipant]

Hi Stephen

Well I can only tell you about Slim,after SCT and 100 days BMB,he was told he was in full remission and had 0.00 Myeloma cells in his body !!! It came back before 6 months was out!!!

As you know different people different results!!!

So make the most of your life,lock the Myeloma away,get on with living,Eve

Forgot David ,only had partial response I think .

• This reply was modified 10 years, 9 months ago by  eve.

[eveParticipant]

Hi Carol

Sorry I thought I had replied to you,I have been following your SCT,and must admit you have done really well,must be the desire to get back to Australia !!!!
We have taken up the option of a second opinion and would recommend it to any one,even the experts have different opinions and views,I think it’s because Zmyeloma treatments are changing very quickly !I know from 3 years how quickly new treatments are coming on line,plus bringing some good and bad things with them.

I am also on the UK myeloma support on Facebook,much smaller group,not open for the world to see.
Say hello to Australia when you get there,we always said we would do the figure of 8 in a Motor home,and Slim wanted to dive the Barrier Reef,this illness does teach you not to put things off,or you will not do them. Wishing you a good return home Eve

[eveParticipant]

Hi Jan

How are things with you??? How is the treatment going,you are another one like Princess Fiona who has gone off the radar a bit!!!!,or is it me not looking into the site as much!!!!

Thank you for the connection recordmenow,I have looked at it,but do not know if it will happen,Slims not one for expressing his feelings about anything,so I have not spoken to him about it,watch this space you never know!!! I can see it could be a comfort to the person left behind.
We have both taken the attitude in the past,on all are travels we have never taken many photo,s that the memory,s belong to us and do not feel the need to share,or bore the kids for that matter!!
I do realise he is thinking about all the things he will miss,he would have loved to go back to NZ,so NZ is coming to us,Kiwi grand kids and daughter and husband coming over.so may be I can get a bit of a video going then,

Let me know how you are Jan?? How is your treatment going and what are the plans?? Love Eve

[eveParticipant]

Hi Everyone

As some one who is a carer to my husband,and over a period of 3 years,and going to are local hospital 15 miles plus Kings in London 86 miles,now Royal Marsden in Sutton just on 100 miles,double with return journey I know a fair bit about it.

As Ellen says unless you are on Trials treatment by NICE is adhered too.
If your local hospital do not have trials you can travel any were for them.

Everyone has to consider there own personal circumstances,when making decisions about treatment,I have learnt everything I can,about Myeloma and I am still learning!!!!
I cannot say we had a good relationship with Slims first consultant!!,he was not great at explaining things medical jargon,and plain English are entirely different,but after 3 years,I would like to think,we respected each other and had more understanding of each other’s views.
And yes he did get exasperated with me asking different things.i do think he has given us the best treatment available to him.
So please remember treatment is standed unless on trials and trial procedures have a format and have to be followed.Eve

[eveParticipant]

Hi Fiona

Well it is really nice to catch up with you princess lol !!!

It is a hard decision when it comes to an Allo ,if you are on Facebook and go into a private group called UK MYELOMA SUPPORT GROUP, Jet has put up some stuff on Allo plus there is a separate group,!!! So lots of information, Jet had hers over a year ago she only got 5 months with her own Stem Cells,but she is going from strength to strength with her Allo, might be worth getting in touch with her, I believe she has just contacted Ellen to be a help for anyone going through the same, I hope this is helpful,Jet is very factual.

Your daughter has backbone,good on her!!!, my own granddaughter has had a few problems in school since her brother died,the school look after her,but from being in a group of friends she has slowly been excluded,I think they grow up very quickly,and no longer fit in, just as a person with Myeloma,except as an adult you can deal with it. So it’s a good thing she can face it head on,it will hold her in good stead as time goes on,out of adversity a lesson is always learnt. Wishing you well Love Eve

[eveParticipant]

Hi Liz and Kevin

Thank you for your kind words,one of the reasons I posted this was for people to have an incite,because by the time you get to are position,all the upset and fear has gone.i suppose it’s knowing the situation before it’s confirmed,you do not ask,but wait to be told.
The bad thing about that is,since coming off Revilimide the Myeloma has increased,if he had been given a lower does and been supported with platelets,may be the story would be different!! I think when you have a patient that is unusual like Slim,calls for unusual treatment,you need a consultant who is prepared to think outside the usual format.
There is always that chance with people who have lots of Chemo having problems with cells,there is a disease called MDS,that can be caused by chemo.although Slims is similar MDS has not a word that the consultant used.

Having people like Dai, Min who looked after her husband,Sharon ,and many many more,helped me over a period of three years,must include the people who are still with us Tom David and Andy,and all the people who sailed through treatment.
We are all very lucky to have a forum like this,long may it continue,Eve

[eveParticipant]

Hi David

So glad for you,are the putting you on maintenance ?????

The bloods are good too,just watch out for those horrible DVT,read that e mail,wait till the wife goes out, lol

Seriously glad things are near normal long May it stay that way. Love Eve

[eveParticipant]

Hi Fiona
How are things going!!! Is hubby responding to new treatment,or are you still at watch and wait,because you have not been posting I have lost track a bit,he came out of remission!!!???
Please correct me if I am wrong,the last 6 months have flown by,just when you do not want them too.

You must stop typing and delating response !!! We expected this,but we dis think he would be offered some form of treatment even if it was just maintenance .??
The strange thing is we are not giving up,but there is no emotion about it,I would rather it was explained on here,so people will have some inclination,does that sound stupid???.

We are not in denial or thinking miracles will happen,just not giving into it,Slims not depressed,he was a bit emotional when he was offered the chance of treatment ,do not expect much different from a roughy toughy marine,they do tend to have a different attitude to life in general.
So Fiona I would rather you say it as it is,not try to think of a nice way to put it,all said in the nicest possibly way!!
Myeloma stays out of our lounge except when I have to do paper work,the day varies to Slims condition even with this biting wind we walk the dog,wish he was able to sleep better!!

Hope is the key word!! And a new consultant who is prepared to not give up on Slim,could not ask for more in the circumstances.

Why spoil today worrying about tomorrow. Love Eve

[eveParticipant]

Hi Trigger

The best thing you can do is ring Ellen on the free number above 9 to 5 weekday she can answer your questions,the reason I say this is some of your mums information plus yours seems in correct,but I could be wrong.????

My husband has had the following treatment CDT CDV and CDR these are the three chemo,s that NICE allow if not on trials if on trials there could be a number of treatments,plus some treatments can be tried again
Myeloma is a blood cancer and should be treated by a haematologist.any answers to your questions would be second guessing,Maggi or Ellen can put your mums mind at rest,you can phone or your mum,they are easy to talk to,and can save you all this worry,provide booklets,all sought,s of things. Eve

[eveParticipant]

Hi Trigger

It is very much an individual choice,and it is your mums choice,I would advice that you get a second opinion ,65 is not old.
You do not say what Myeloma your mum has,or what damage she has,or if it’s effected her kidneys these are very important in any decision she makes.

My husbands consultant advised us to go to Kings and speak to the experts,he did not think it was advise able not because of age but lung damage through clots,Plus kidney problems early on. Kings said yes to SCT.

For my husband it was not worth it,it takes a good 6 months to recover,and he only got 6 months remission,but know one knows what the out come will be!!!!!!!
What ever remission someone gets,you can half it next time,on average.
Some people do not have SCT and get good remission!!!!!
There are no fixed rules on this roller coaster ride,the only rule is it will return.Eve

[eveParticipant]

Hi David

Revilimid is known to cause DVT ,it will be your consultants approach to it,if you stay on it or not.When Slim was on the Revilimid he was on a preventive does of Claxane 40m but this still did not prevent an artery blockage from hip to knee although he had low platelets?????,

There is a tablet called RIVAROXABAN that does the same job of thinning the blood,must be taken 1 every 24 hours,saves all those injections.

You do not say what your blood platelets are,because all bloods diminish on Revilimid ,but do not be fooled in to thinking,you cannot get a blockage in Vein or Artery.look out for those symptoms I sent you in the private mail. Eve

[eveParticipant]

Hi Grega

I know GCFS injections boost white cells in the blood,if you contact Ellen or Maggi on the free number above they can explain. Eve

[eveParticipant]

Hi Andy

Well done Steph ,I do not know if you keep a BP gauge at home ,but I find this invaluable ,Slim never hits a high temperature ,but his blood pressure goes down,and he is not confused,but there is something not right about him,I have learned this is a prelude to bloods not being right plus,his temperature spikes very quickly,I am talking 40 plus,I use to give him paracetamol but was told not to because like steroids,paracetamol can hide an infection,so always best to get the bloods done.

I know what that feeling is like,Slim asked is this the beginning of the end last time,had a rigor as well,they just got on treating him,with out explaining assumed he could remember the ones he had in ITU,but he is still here alive,stubborn and fighting.
So glad you are home keep an eye on those bloods,while you are having a few problems,may be you should have blood test done more often.Love Eve

[eveParticipant]

Hi Peter

I try to look for positive than negative ,We have all been were Dusk is angry and confused,I think your story Peter is a an excellent example,over 10 years,not great remissions and bone damage and you are still here.

Information and hope is what this forum is about,but there also has to be space for people who need to air there feelings,if they are genuine they still need help. I think it is very important.
With any open forum you will get confrontation in some form,but I think the knowledge gained out ways this,your story is a good example,it gives hope,but there has to be a place for people who are not doing so well,there story might be negative because of there situation ,but any information might just give them some hope. Eve.

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