[DaiCroParticipant]

At first I was phlegmatic and just said 'Whatever it takes'. Then I started to get depressed… suffering from withdrawal symptoms from seeing my Grandchildren and my daughter etc., now I am beginning to get bloody angry… and why? Because I feel I am being short-changed… and my whole treatment and future well being is being jeopardised.

I have had reduced treatments, missed treatment altogether and I have spent the last eight weeks Neutropenic and advised by my consultant to avoid seeing my Grandchildren and my family. Each time I turn up to the pre-treatment consult it is with trepidation as to the level of my Neutrofils… determining whether I have a full dose, reduced dose or any dose at all. Then I am asked by a fellow patient in the waiting room (like me he is also on Bendamustine and receiving GCSF injections) why I haven't been given GCSF injections to help with getting the Neutrofils up. Separately, an hour later, a nurse in the Day Case Unit asked me the same question… apparently GCSF are often given to boost the Neuts.

So why not me? Is there a medical reason… no, none as far as I know… yet each time, every cycle so far, I have had serious problems getting and keeping my Neutrofils high enough to guarantee a full dose of treatment and to keep from going Neutropenic within days of each treatment. For instance… this Cycle (4) I started with my Neuts reaching 1.17… so I qualified for a full dose (I only have to reach 1.0 to qualify). Then after a week my Neuts are down to 0.73 – so I qualify for a reduced dose (as long as my Neuts stay above 0.5). Now this is not a one-off… this is the story on every single Cycle so far… and on Monday my consultant (my original consultant but not my usual consultant, if that makes sense) has the gall to tell me that after the initial reduction in my light chains (from 2,800 to 880) there has been a slight rise (to 910) and it may be an indication that the treatment has stopped working (she only voiced this at the end of the consult when we had stood to leave… she had scanned the computer report as she does every time… not seeming to know where the hell I am medically when I enter the room. We often have to wait while she catches up with my records etc., it is galling and, for the first time I voice it, totally unacceptable. So she says that treatment might have to stop when there is nothing else available for me… nothing at all… when I have missed 1 treatment and had 3 reduced treatments in the total of four Cycles with 2 treatments per cycle.

So in the morning I will be ringing the lead nurse… raising my points and demanding… gently, firmly and assertively… about the issue of GCSF, which, if given, may well have stopped the need for reduced doses and about how my case is discussed and developed prior to my attending for consult.

I am angry… and I feel rightly so. :'-(

We shall see.

Dai.

[TrigletParticipant]

Dear Dai

I absolutely agree with you. Why didn't they offer you the GCSF injections to boost your neuts? Apart from the patient in the waiting room whom you met and is also on Bendamustine, you can add my name to the list as well. I was admitted in late February with a high temperature and low neuts . I had finished the treatment with Bendamustine in December as it had stopped working for me, but whilst I was in hospital in February. GCSF injections were the way treatment was going to go. Fortunately my neuts recovered on their own and it wasn't necessary – but it was certainly mentioned!

Good luck

Rosie x

[eveParticipant]

Hi Dai
I can understand you being angry,

You know you have to keep your eyes wide open,not giving Zometa early is an example.

Why wait?? Ring up speak to someone about the injections,this gives them time to have a talk,before they see you again.Eve

[janwParticipant]

Dear Dai,

I am so sorry to hear about your current situation. It's certainly a serious issue which will no doubt face a lot more of us when we have tried various different types of treatments for myeloma. It must be a considerably anxious, stressful and worrying period for both of you as well as your close family. I would also feel angry and upset if I were in your situation, particularly when you read about new drugs being approved in America, but it seems to take an age to access these drugs in the UK.

My neutrophils are never above 1.8 and are often 1.3 without any treatment, so I don't hold much hope if they dropped by even a little with the level requirements of future treatments. I was never offered extra GCSF injections in preparation for stem cell harvest and struggled to achieve sufficient cells for one transplant, but at least this was successful in providing me with nearly three years of remission. I battled to obtain monthly Zometa infusions Aand had to change hospitals to receive the drug.

Perhaps if you speak to the head haematologist consultant at your hospital, as well as your lead nurse and if you are not happy with the outcome of your discussions or available options, then I would contact your local GP for a possible referral for a second opinion at another hospital. You could also contact the myeloma support line to discuss your options and gain their advice on any new treatments which might be available or possible new trials. They were very supportive and with relevant detailed knowledge when I contacted them about my possible second line of treatment and the availability of a specific drug which I was interested in trying.

I know you have changed hospitals and locations before. The travelling time and hassle of being treated at a different hospital within another area is daunting. After changing hospitals, I am now travelling just over an hour to reach my new hospital, but I realise this is still a lot closer than other patients have to travel for their treatment. However, when you are feeling poorly under chemo therapy with bone pain, nausea, muscle weakness,fatigue and then spend hours at hospital waiting around for drugs and appointments, then any travel distance is worrying and tiring. When my mom was diagnosed with Leukaemia last year, there was no way she was willing to travel beyond her local hospital because she was just not fit enough to consider a long journey possibly several times a week to another hospital.

I hope you are able to find a suitable strategy which works for you and your family.

Take care. Janice

[VickiParticipant]

Blinking eck Dai, you must be really cheesed off and that's an understatement and don't blame you!!!!

Gcsf was given to Colin a couple of times during his induction treatment when his neutrophils were a bit low. He never missed a treatment but might have been delayed a week. There is so much inconsistency between hospitals and given what's a stake is life you'd think they'd have more urgency! I would speak to the myeloma team on site as they were great when I called them during Colin's initial treatment 🙂

Fight for a good life!

Vicki and Colin x

[susannahParticipant]

Dear Dai Michael was in a similar position with the Bendamustine except his was low platelets, he had reduced doses missed cycles because of his low count but his consultant wouldn't give him a transfusion. Looking back we should have taken it further, but we assumed she was right. Saying that he did receive GCSF injections. I thought quality of life was important,your consultant obviously thinks telling you to stay away from your grandchildren will have no effect on you.
I know what you mean about the consultant catching up while you are there, she perhaps needs a wake up call!
Love
Suex

[bandityogaParticipant]

Dai

Hope you get this sorted out soon. Get an opinion from another consultant. You are quire entitled to do this.

NHS bah

Maureen

[janwParticipant]

Dear Dai

I have just been reading on this site's myeloma home page the summary from the 14th International Myeloma workshop, held in Japan, which states how Pomalyst is effective for relapsed and refractory myeloma patients who have been through a number of treatments – which I am sure you know quite a bit about this new drug.

Apparently there is a new trial called STRATUS which offers Pomalyst combined with DEX which is open, or about to start recruiting, in the UK in 9 locations. The downside is the distance from where you live in Nottingham as the trial is being offered in Manchester, Leeds, Liverpool, Wolverhampton, Belfast, Bristol, Canterbury, Newcastle and Sutton.

Perhaps this might be a way forward for you to possibly consider or discuss with your consultant?

Jan

[DaiCroParticipant]

Thank you one and all, your support is invaluable to me. 🙂

It wasn't cowardice but I didn't ring in today. The treatment has hit me harder than before over these last two days and when I started the day my Dex kicked in and I was snappy and short tempered. I apologised to Janet the first time… for snapping and for the snaps that might leak out during the day… Bless her, she just smiled and said that it was so unusual and not at all like me so she understood and would let any show of Dexitude to roll off her back. Perversely, knowing that, I managed to bite my tongue (literally on one occasion) and plug the leaks before they could escape… at least I think I did… knowing Janet she wouldn't tell me if they did. 🙂

Feeling grotty and with Dex on the rampage, I decided not to ring Sarah or Jenny, my lead nurses. I was afraid that I might get 'emotional' and while I am feeling angry I did not want them to feel that anger as first points of contact. I want to express my points of view with appropriate candour, leaving no doubts as to what I want from my call and I was not confident that my Dexitude would allow that… and God knows, they of all people don't deserve to be exposed to the raw face of a Dex fuelled angry patient.:-0

Janet has to be with the Grandchildren by 8am, so I will be abandoned to my own resources for the day… poor me. 😉 Actually, poor Janet… because she will have a mixed day of playing shop, Princesses and ad hoc stories made up by Edith as she goes along while trying to keep Alfie involved in something other than the iPad. One of those involvements will include baking for Edith's fifth Birthday Bash on Sunday… Alfie, who is seven next month, is a rather good pastry chef, having been trained by Janet since he turned five and he and Janet work well together. I can imagine them now, chatting away as they work. We bought him a subscription to Junior National Geographic for Xmas which he absolutely loves (so do we) and he will keep Janet enthralled as they bake. 😎

So a slight lay in, a gathering of my thoughts in writing and then I will ring in and speak to Sarah (Jenny, recently returned from maternity leave, doesn't work Fridays). I think it will do us all good for me to leave my points to lie on the table for the week-end… I don't expect any quick resolutions, I'd rather that they thought on my points and answered at least some of them by the middle of next week… the GCSF injections in particular… so that I can get my Neutrofils up in order to play shops and yes, Princesses and help Edith develop her made-up stories in between sessions on Football Manager 2013 and reading and discussing the articles in the latest Junior National Geographic. 😀

These are the really important things, things I am missing out on and I am angry that there may have been a way to ensure that I could enjoy them but for the sake of a little thought from my medical team. So gently but firmly with a follow-up email is the way I choose to play it. 😎

Hey ho. Sleep well… I'm here for the Dex friendly duration. 😉

Dai.

[janwParticipant]

Hi Dai

I have just looked up the other trial mentioned on this sites myeloma home page, where it mentions the new ENDEAVOUR trial which appears to be the same as the upcoming MUK five trial offering Carflizomb + Dex v Velcade + Dex.

You would need to read through all of the eligibility criteria for the Endeavour trial because it appears to be limited to patients who have been through one to three lines of treatment. Apparently any initial treatment, plus SCT and maintenance is considered as one line of therapy. Neutrophils also need to be 1.0 or more. However this trial is currently only open in two UK sites which are The Royal Free and Nottingham. Did your consultant discuss this trial with you?

Hope this is helpful.

Jan

[DaiCroParticipant]

Hi Jan,

I discussed the MUK 5 trial with my consultant again this last Monday and she was quite adamant that the trial had not yet reached Nottingham… this being so and with her stating that the Bendamustine needed watching because the reading was up slightly, makes me wonder why she did not raise the question of the 'Endeavour' trial.

Thank you… another point for tomorrow. 🙂

Dai.

[HelenParticipant]

Hi Dai
Having only recently ( yesterday?) thought you seemed to be doing rather better than for a while I am finding it really disappointing to read of your recent encounters and frustrations, I can totally see your point and don't understand the reasoning behind it,do they think gcsf might exacerbate myeloma cells ? Other people seem to get it in similar positions so it doesn't make sense. I was horrified too that with all your previous bone problems you were never on regular zometa until now, and you staying away from people especially your grandchildren is such a hardship, a serious downgrade in life quality. How can you exist happily in a bubble.
I think the trials Jan mentions are the ones I was told about last month, they are not up and running yet in Newcastle yet but are expected within the next few months. All I know is that there is to be a wash out period of several weeks with no mm drugs before either commences.
Anyway, do have a pleasant weekend, I hear the weather has a chance to improve so hope to get the garden gloves on again.
Love Helen.

[PerkymiteParticipant]

Hi Dai, Sorry to hear you are having a tough time of it. I am just starting (Monday) Velcade + Dex as my second line treatment so I am a long way behind you I think.

However, I have total empathy with you on the Consultants reading up your notes before an appointment. The random Consultant system is used at Musgrove Park Taunton and I feel really annoyed whilst I have to wait for them to go through my notes and just about every time I have to say, "No, I am now on etc…etc..". I accept it is better use of the Consultants time but it is annoying all the same to the Patient.

Hi Helen, No, my bulbs did not come up, or not all of them. It was so patchy you could not make out the words I Love You. This means I can try again in Oct/Nov this year 😀

Kindest regards to all – vasbyte

David

[scott9Participant]

Hello Dai

I've not looked on this site for a bit but you and the other fighters are always in my thoughts. Sorry to hear about your unhappy times. If it is any consolation my neutrophils have dropped to 0.6 and I'm not feeling too great. I was due to have my eighth bendamustine infusion on Monday but that was cancelled due to low neutrophils. I was told that my light chains at 137 are as low as they are likely to go. They were about the same reading the last two times. I have read that you are staying in and avoiding everyone. My goodness, I've been out and about and mixing with everyone. I was at a big family gathering Tuesday and Wednesday – 19 of us. We ate drank and made merry. I did my best even though I was feeling bad. As far as I'm concerned, life is too short now to stay shut away. If I can get out, then I will. I don't feel any worse for the experience.

I'm not sure what will happen for me next – maybe SCT.

Take care.

Scott

[tomParticipant]

Hi Dai

My you have been through the wars and like all good army's got some issues with supplies 🙁

Hope you made that phone call and its soon sorted out Dai.
Fingers crossed for you

Tom Onwards and Upwards

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