[jeff605Participant]

Hallo all. quick recap – was on CDTa for 8 courses,papaprotein dropped from 48 to 9.1,was told I was in partial remission, then put onto CDV (Vancade) for two courses. when I went to see the consultants last week, I was told that as my paraprotein was not responding,it had been decided to stop all chemotherapy as it meant just putting toxic drugs into me with no benefit.(I was also taken off the X1 trial, rather than radomised throuh to maintenance).I was assured that I would be monitored and action taken if things deteriated. So, how do I feel about this? Rather abandoned, worried, and yes , a bit frightened,as I don’t know what to expect – I’m one of those who likes to know what’s going on – with no idea of timelines of changes that I can expect.Has anyone experience of the above or similar ? Jeff

[meganjaneParticipant]

Jeff,

I am sorry I can’t answer your question but I know that while my husband Phil has been off treatment (he had his SCT a year ago) he has still had monthly blood and urine tests when he has gone in for his Zometa once a month. These tests have been checking his paraprotein and light chain numbers as well as the other more general blood counts. It may be that your paraprotein has plateaued but stabilised so they will continue to monitor your results but not give you anymore treatment until it is needed? Do you have a monthly appointment set up?

When Phil first finished his treatment we also felt like we were in limbo, after getting used to the twice weekly trips to the hospital it took a while to get used to going only once a month but we have the phone numbers of lots of people at the hospital we can call if we are worried about anything between the monthly visits and Phil has gone in once when he wasn’t feeling well and they did blood tests and prescribed antibiotics.

I would ask your consultant and/or nurse your questions and hopefully they will explain the plan of action more clearly.

Megan

[jeff605Participant]

Megan, thanks for the reply. Although I do have an appointment booked for six weeks time, when I shall have blood tests done, I think I shall write to the consultant, as I am still concerned that I have been taken off the x1 trial without fulfilling the ” rules ” as stated in the write-up for the Less Invasive Pathway, for such things as number of courses of VCD, and randomisation onto maintenance. It may be that I should trust my team to know best, however the way it has happened makes me wonder if there is something else behind it, such as me being inelegible for Velcade. As you said, Megan, you feel vunerable enough from the changes anyway, without any additional worries.One of the major problems with Myeloma is the indiviual way it affects us, no one can say when this or that will happen, so I don’t know if this decision is good news or bad.Anyway, I shall continue taking life one day at a time, and at least hopefully enjoy getting my sense of taste back!! Thanks again, Jeff

[meganjaneParticipant]

I think you are right to ask the question, as much as we need to trust the teams it is your health that is affected by the decisions they make so you need to be happy with what is happening and understand the reasons behind it.

I hope your taste buds return soon – that would be a plus! I know Phil stop liking the taste of white baguettes while he was on treatment, he couldn’t even stand the smell so it was nice for him when that side effect went away – white baguettes are our weekend treat for sandwiches 🙂

Megan

[mhnevillParticipant]

Hi Jeff

I can imagine how you feel not knowing the answer as to why you were taken off the Trial. I have learnt to be more assertive and ask “why?” I also always take a written list of the questions I want answering so I don’t forget. I nearly always see someone different, but I find having my “list” helps them to see I want to understand exactly what’s happening to me.

Couple of things I have learnt from the Site over the years are I. Many folk don’t get into complete remission yet carry on for a long time as if they were. ii. That sometimes PP levels continue to fall after treatment is complete.

Don’t be too down hearted. Maintenance is a fairly recent notion and some would say it is better to have as long a drug free life as possible.

Think of it like this, you will be closely monitored and there other drugs in the arsenal for later if you need them and more coming on stream all the tome.

All best wishes.

Mavis

[jeff605Participant]

Hi, Mavis, thanks for the very positive reply. I haven’t as yet had a reply to my email to the consultant, in this I have asked questions concerning what the decision to take me off treatment means to me with regard to remission, what happens if my readings get worse, and why I was taken off the trial – all things I should have asked at the time, I think I was so suprised by what I was being told I went blank ! Talking to a friend of mine how has been fighting mleloma for some eight years, we agreed the one thing the consultants at Leicester aren’t good at is telling you in detail what is happening and why. You seem to have to drag the information out of them. The one thing remarked upon is the very good response I initially had to the chemotherapy, what significance this has I don’t know.Thanks again Mavis, best wishes Jeff

[jeff605Participant]

Just to inject a bit of humour – although having been on the X1 trial since last june it’s only two weeks ago I discovered it’s actually the eleven trial, not the x1 trial ! How stupid is that!Jeff

[jeff605Participant]

Eve Prokop, Eve for some reason as I’m having problems answering you message, so I am doing so here. Thank you for the reply, I appreciate you taking the time. I am not going the SCT route, due to my age ( 75 ). I found the information you have given me very useful, and much as I have come to expect, and really, what the consultant should have told me. Might I add you put it in much the way my late wife would have !
Although at present I am a bit restricted physically due to Myeloma affecting my spine, I am waiting to be called for a vertobroplasty operation ( this involves injecting a resin around the damaged area of my spine ), when this is done I shall take your advice and take a holiday.
It is all a bit scary, but I take the attitude of taking one day at a time, and try not to worry too much between consultant visits.
Thanks once more, and best wishes to you and your husband, Jeff

[eveParticipant]

Hi Jeff

Well age and not having SCT explains it.

I also think,we do not take every thing in when it’s not good news,I am sure the consultant will explain if you ask,or see the myeloma nurse who is in charge of the trials,they are usually better at explaining it,in none medical terms.

People can be smouldering under 10 and it’s only when other things start,like bone damage or AKF that there is a need to start,they have knocked them Myeloma cells back without the Chemo doing a lot of harm to you,it is a wait and see situation,but they will catch it quickly by blood test,some people do not have that option because they become non secretor.

David are Vesbyt man ,would say quality not quantity is very important,and remember there is a lot of drugs still to try,plus the likes of Velcade can be used again in the future.
The consultant wants to do the least harm to your bone marrow,and give you a quality of life,if the Chemo keeps working you will find your PP going down even though he stopped Velcade it’s still in the body.Hope you feel better about the decision.Eve

[jeff605Participant]

Hi, thanks to all of you who have helped me understand and to a degree come to terms with my situation. From what you have said it’s going to very much be a wait and see what’s happening scenario, and keeping my fingers crossed. I will treat this in the same way I dealt with the Myeloma when it was smoldering, I went from clinic appointment to clinic appointment and put it out of my mind inbetween appointments as much as I could, and got on with life.Once I get my back sorted out I should be able to get back to my hobbies and think about holiday ideas. I shall however, still try to get answers to the items mentioned in this discussion that are worrying me regarding my being taken off the trial, etc.
Thanks once more for the help and support. Jeff

[PerkymiteParticipant]

Every time I go to see a Consultant I get a copy of letter he/she then send to my Doctor. This I find jogs my memory of what has been said and generally explains a lot more. It would certainly give a reason for stopping a form of treatment, do you not get this? The list of questions to ask is absolutely essential and very good advice, some people even take small recorders I understand.

I went onto Velcade for my second line treatment, but only had three cycles I had serious PN in my legs. I am now on third line Revlimide and Dex, diagnosed in 2009

Kindest regard – Vasbyt

David

[jeff605Participant]

Hi, yes I do get a copy of my doctor’s letter, this does let me follow trends in my blood results, and as you said a ( usually ) rather brief resume of what took place at the consultation.Be interesting to see what it says this time. I usually have one of my daughters in the room with me, usually the one who is under investigation to establish if she has Myeloma or not, we jog each others memories and recall what was said. I didn’t have any questions going into the meeting as things were going well, as I said previously, what happened threw me completely.
Sorry to hear you had serious PN, I have minor PN in my fingers and toes, wearing off in my fingers since stopping treatment, but not in my feet yet. Fortunately as said, only minor discomfort.
Regards, I hope all goes well with your treatment Jeff

[jeff605Participant]

Hallo to all. Well here I am, 10 weeks of ” wait and watch ” later. Just had a consultant meeting last Thursday, with a consultant that did listen and answer questions.Not the best of news, p/p has risen from 9 to 15, the consultant explained the team was to discuss and decide on future treatment on Friday, I don’t know the results of this as yet. The other negative results from an earlier meeting two weeks previous was that I am quite anemic, which explains the tiredness, lack of energy, etc.( have decided to stop driving to the hospital 25 miles away as I found I was losing concentration on the way back ) I had an urgent ( 5 days later ) endoscopy which didn’t show significant bleeding, so had a blood transfusion last Friday,
(doesn’t seem to have much effect yet ) with further investigation to follow.
I asked the consultant about being taken off the X1 trial he explained it was to prevent the trial pathway from limiting the options for further drugs. Makes perfect sense, just wish I had been told before, ( when asked reason previously was told that the trial had finished with me !) not knowing caused me worry and more importantly affected my positivity to my future. So, now waiting to see what ” they ” are planning for me. Regarding my back problems, I have been scheduled for an MRI scan. I have had one of these before, and found it quite difficult, I am claustrophobic, and one of the drugs I am taking gives me a very dry mouth, when lying on my back the difficulty in swallowing this causes gives me a lot of distress. Any suggestions in dealing with this gratefully received .
All the best to all, from Jeff

[eveParticipant]

Hi Jeff

I do not know much about your present state to comment on it,feeling if you have been abandoned ,I can understand,your PP are going up,but your tiredness is I would say because of your bloods!!!,even if they have given up on you,you are entitled to have a quality of life plus may be second opinion. I can only tell you my husbands story,and hope it gives you some hope.
First may I say,you could take some tablets or even have an injection that would calm you before MRI,plus what does the BMB say.!!!!!
My husband is 69
My husband came off Chemo last year through sepsis and low bloods,wait and see policy because he is non Secretor ,BMB done,again wait and see policy,not a happy bunny but excepted it. Appointment in new year,Myeloma up to 25 to35 in bones but patchy.bloods not recovering still platelets often under 10 HB going down to 8 on occasions,nuets just holding around about 1.
Then we were informed there was nothing more they could do,they would continue to support him with bloods and platelets!!!, I expected them to be able to do something,and yes we felt they sent him home to die!!!!.

Moving on 2 months,we now go to another hospital he is being treated,he has a better quality of life and he has improved in his general condition,his bloods have improved,his everyday condition has improved,less pain as well.
We understand fully that this might not work,plus he could die of an infection,but at the end of the day his attitude is I am not ready to die.
We have a daughter coming home from NZ,we are hoping to make the best of the summer small trips away in are Motorhome,lots of things to live for.

So never give up hope,and enjoy everyday.Eve

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

[jeff605Participant]

Hallo Eve, thanks for the reply, quite inspired by your husbands story. I’m sorry if my last entry sounded downbeat, probably caused by the effects of the anemia and rather bad news concerning my daughter, who is hospitalised just now. I am actually a lot happier with my understanding of my situation following the last consultant meeting and feeling that I am still under their care, and not now feeling somewhat abandoned. I am still apprehensive of the future as I would think we all are. I think one of the things that ” downs ” me is the physical restrictions I am suffering due to a combination of back problems, sciatica and the general tiredness and lack of energy due to anemia stopping me getting on with hobbies and pastimes, even walking more than a few hundred yards,especially as I actually feel quite well in myself !! I know I have had things pretty easy concerning drug reactions and how I have felt in myself, compared to others, so apologise for going on and sounding sorry for myself – well I am a bit !! Jeff

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