[DaiCroParticipant]

I always have a short or disturbed night's sleep before a consult and felt very tired when I attended this morning. I had my bloods taken and then waited to be seen and when we were ushered in my consultant was looking at my bloods results sheet with a frown. My bloods were okay apart from my neutrofils which were lagging on 0.88… meaning I was neutropenic… again or still. I have had half measures twice in three Cycles but always on the second infusion and my consultant wanted a full measure for the first infusion of Cycle 4, so another week's rest was the order of the day and try again next week. I will go in next Tuesday for bloods (it would normally be on the Monday but it's a Bank Holiday) and as long as my Neuts are over 1.0 I can continue with treatment. My light chains are at the same level as the last test but there was only 4 days in-between tests for some reason… they are always way behind anyway so it is difficult to gauge just where I am at the moment.:-|

I asked about MUK 5 and I was told that our hospital is not on board yet but they will be receiving guidelines and procedural protocols in the next few weeks. My consultant did say that we cannot skip from one treatment to another… there has to be a few weeks break but she will know more about the trials by mid-April… so it is a matter of wait and see.:-/

So I'll wait and see.8-)

Dai.

[meganjaneParticipant]

Hi Dai,

I am sorry to hear that your neutrophils are not behaving themselves, hopefully by next week they will have recovered enough for cycle four to start.

Megan

[tomParticipant]

Hi Dai

As I do I hate (though we have to) have my bloods taken every four months now I think?, then wait four days before I get confirmation that all is well, its not a good feeling.

I hope you can continue with your treatment and all picks up.

Stay Well and Fit

Tom Onwards and Upwards

[eveParticipant]

Hi Dai

Sometimes these experts forget what it is like for the person with Myeloma,and we can make up all the excuses for them,we know they have to be practical,but I do think they need to go back to school and take lessons in compassion and politeness .

I would not wish this disease on anyone,but they should show some understanding how we feel,when options and time is not on our side.

You are not asking to jump from one treatment to another treatment,you are asking what the possibility is of getting on this trial if this one fails,you are not asking any thing abnormal .

I have come to the conclusion they do not like patients who ask questions,you are just suppose to sit there and nod your head.and then your 10 minutes is finished.Eve

[VickiParticipant]

Never mind Dai, the neutrophils are just being a bit sluggish! Hopefully they will gird their logins and get a wriggle on! 🙂

Vicki and colin

[DaiCroParticipant]

[quote]Never mind Dai, the neutrophils are just being a bit sluggish! Hopefully they will gird their logins and get a wriggle on! [/quote]

Hi Vicki,

They certainly need to get a wriggle on… I will have my bloods done in the Day Case Unit on Tuesday morning (due to no clinic on Easter Monday)and if my Neuts have managed to squeeze over the 1.0 (from 0.88 – a growth of 0.12) then an order will be placed with the pharmacy and treatment will continue when they have made up the Bendamustine to the right strength and consistency. 0.12 is very little but I'm hoping for a bit more to allow for a full strength infusion.

The problem I have had since starting on Bendamustine lies in my Neutrofils score. Because the 2 infusions are only a week apart my Neuts don't have time to recover and I end up having a half measure for the 2nd infusion… this is Cycle 4 and I ave not managed to have 2 full strength infusions yet.

Wriggle on Neuts, wriggle on.

Dai.

[DaiCroParticipant]

Hi Eve,

I have to agree with you regarding sending the consultants back to school.

One of the prime objectives in giving treatment is to ensure a balance between efficacy and quality of life… apart from hospital visits for consults and treatment I have not been out of the house in 6 weeks due to being Neutropenic. I told my consultant last Monday that I could not see my Grandchildren and that they and I were upset about the situation but she glossed over my concerns and told me to carry on avoiding them and people generally (although they bring us in to packed clinic and Day Case waiting rooms where patients and their carers are sniffling and coughing like there is no tomorrow).

I'm slowly going stir crazy and unless they find a way to get my Neutrofils above the 2.0 mark this situation could continue for the whole 8 Cycles. That is one of the main reasons for me wanting to get on the Kyprolis (Carfilzomib), Cyclophosphomide, Dex trial… all done by tablet form and not known to push down the bloods. Bendamustine might be effective but it is an old fashioned hammer of a chemotherapy and it caught me at the start of treatment when my Neuts were low (1.7) and they have never had the chance to recover.

They will be assessing the trial over the next few weeks… part of me hopes that I can't have a 2nd infusion this cycle which means that ostensibly I will have been off, or without, treatment for at least 3 weeks by the start of the next Cycle… if they declare me off Bendamustine then I will only have to wait 2 or 3 weeks before being qualified for the trial.

I would like to think that they discuss my case and my circumstances and try to work things in my favour… 3 years ago I would have said 'Yes. they would' but nowadays?

All the best for Slim as he starts on the Velcade… my advice is to go for the whole 8 Cycles, even if he reaches 0 after 4 or 5 Cycles… I did and they finished my treatment after 6 Cycles but my MM came back pretty quickly… the whole 8 Cycles doesn't guarantee longevity but it certainly helps to drive the disease right down and gives your cells a fighting chance.

Regards 🙂

Dai.

[eveParticipant]

Hi Dai

Slim has already had Velcade ,!!! I was hoping the doctors ,might consider a form f maintenance ,as BMB are the only way to tell Slim has Myeloma,you would not believe how good his bloods are !!, most properly healthy than mine.

We should. Have the answer once we have results of MRI and body scan,by the time we see consultant it will be over2 months since BMB and another BMB ordered for May.

When it comes to later stages and treatments,there seems to bea queue.time becomes a very valuable .
I think they are finding Velcade is excellent while you are on it,but the Myeloma just comes back,they need trials as a maintainance drug. You are right in saying,that once you are further down the line,it's how long!!!but you have to measure quality,against drug treatment,I would agree you are more likely to pick up an infection at hospital ,I know when Slim got Pnuemonia ,the only place he could have caught it was hospital.
Have you heard from Keith,last time he was in hospital !!! eve

[DaiCroParticipant]

Hi Eve,

Keith's last post was on the 10th of March, a reply to me when I asked him about his latest treatment (below).

Being home is good although he is still neutropenic with very low platelets. I am hoping that this latest treatment is working and that he will let us know of any progress as soon as he can. 🙂

Dai.

[quote]Hi Dai, yes Prodeserone is a close relative of Dex but not as strong as you don't get the sugar spikes with it like I did with Dex. And you don't get the come downs when coming off them. I don't understand the difference between PP's and Light changes either,it's enough trying to come to terms with what I've got. The got rid of the infection and I'm back at home trying to recover. Temperature is normal once again and I started on Melphalan/Pred on Friday.

Take [i]care[/i] all

Keith.[/quote]

[andygParticipant]

Hi Dai.
I'm at the day case unit Friday – hopefully I'll bump into Keith there and we'll have a catch up. The last time I saw him was the 8th March and he was just starting on melphalan.
As to your neutrophils mine haven't been over 1.1 for nearly a year now. My readings have hovered between 8 and 1.1 for the last 4 or 5 months but did go as low as 5.8 before that and only then was my treatment amended – I was told to stop the cyclophosphamide for a week. As you know I'm on RCD. Only when my Neuts were around 6 was I told to be extra careful around meeting people. I know everyone reacts to differently to treatment and every bodies circumstances are different but I'm happy when my Neuts are over 1.0 and so is my consultant so much so I'm only having my bloods done every 4 weeks now where as before when my Neuts where below 8 I was on weekly blood tests.

Every day is a gift
All the best
Andy

[PerkymiteParticipant]

I am getting a little confused; you guys are way ahead of me when it comes to treatments. I have my next appointment with a Consultant on Friday 5th. At my last last consultation I was told all being well I would probably move on to Velcade with Dex.

I have been getting a fair amount of bone pain and am taking Tramadol and Paracetamol for that. Last Wed/Thu I ended up in Medical Assessment Unit, at Musgrove Hospital because of the pain I was in, which I thought was bone pain. It turned out that I have an infection in my right lung and I now have two types of antibiotics for that. My MRI scan showed that I have 5/6 bone lesions spread through my body, two of which are either side of my chest. All in all I have not been a happy Easter Bunny for the last week or more.

The reason for my post is that I am getting mixed information about Velcade, if I am still allowed to take it of course? I picked up the impression early on that Velcade had a good reputation and could give you at least a year remission. Recent post have tended to be a bit more cautious. I quote my fountain of Knowledge Eve, what would we do without her, [b][i]I think they are finding Velcade is excellent while you are on it, but the Myeloma just comes back, they need trials as a maintenance drug. [/i][/b] I know things are ?individual? but as a general statement your thoughts on Velcade would be very much appreciated. By the way Dai I intend to ask about MU5 trial thanks for the heads up on that.

Kindest regards to all ? vasbyte

David

[eveParticipant]

Hi David

I see you are quoting me, At the time I ask Slims consultant about possible maintenance ,with Velcade I explained Slim had had CDT then Velcade then SCT and wanted to know if there was the possibility maintenance. As at the moment it is 10 percent in bones. I was just putting a possibility forward rather than possibil round of chemo.????

I thought after 2 years he under stood me,I say this as English might be his second language ,plus doctors tend to use medical language . So I did make allowances for the meeting we had.

I was not prepared for his explanation,but he did say if I thought Velcade was so good,how come it has failed for Slim,I will not repeat what else he said,but he did leave me gobsmacked,my daughter suggested it might be easy to write to him,it will give him time to digest the questions before are next visit,she also offered to come along,if he thinks he has problems with me,he has not met my daughter

It's not a chip of the block,she is the whole block,she has spent 16 years dealing with the medical profession,and does not take prisoners,now Matty is dead she is looking for a project .
The same with Myeloma it's different for everyone. And takes no prisoners
The only difference I can see in America they DNA profile and treat accordingly . Eve

[PerkymiteParticipant]

Hi Eve, I would be staggered by that reply as well.

In Taunton we generally do not see the same Consultant consecutively i.e. twice in a row, unless the Consultant has specifically asked to see you. I consider it a terrible system, sometimes I feel I am on factory roller feed table. I am going along to the inevitable end and my card is just being stamped on the way! I might make some diversions on that route but they are all just ticking the boxes, having said that I really cannot complain about my treatment, other that it is so impersonal. I certainly am spoken to civilly, kindly and with some respect. But I think it is a trait in the medial profession if they feel you are trying to ?do their job? they can get uppity.

Kindest regards ? vasbyte

David

[jillsParticipant]

Hi David,

My Mum had Velcade plus dex last year – she had four cycles of treatment involving a subcutaneous injection once a week and two days of dex per week. The Velcade did reduce her pps and light chains (she has IgA type)during the treatment but the levels started increasing again almost as soon as she had finished the last cycle and there didn't seem to be a maintenance option to move onto next. Her consultant implied that Velcade was not always good value for money in terms of ongoing effectiveness (I understand the cost is around £7000 per cycle). She is now on Revlimid (since Feb)and so far it seems to be working – I am assuming she will probably go onto some kind of maintenance dose after a number of full cycles.

All the best,
Jill

[andygParticipant]

Hi David
First of all I only see one consultant and she has been my consultant since I was diagnosed. Obviously if I have an emergency whilst she is unavailable due to holidays or at another clinic I see another doctor but my consultant is the one that treats my myeloma. I have been referred on to Prof. Jackson at Newcastle due to my myeloma being difficult to treat but up till now he has only taken on an advisory roll but will take a more active roll in my treatment when things start to go wrong.
As to velcade I had 2 cycles of PAD but unfortunately it had no effect on my MM so in my case velcade didn't work, but there again I haven't had any success with any front line treatment. CDT, PAD, and DTpace all failed. I'm now on RCD.

Every day is a gift
Andy

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