[KeithH17Participant]

Hello everybody, Been to hospital today for blood tests and to collect my meds for the 5th cycle of Rev/Dex.
Since the steroid dose was cut apart from the first week of the cycle I have felt much better and my glucose level has returned to normal. What's strange is I received a call this afternoon saying that my Haemoglobin has dropped back from 9.7-8.5…Nuets from 1.8-0.6…and Platelets from 45-32.The nurse asked me how I was feeling and did I want a blood transfusion but I told her I was feeling the best I have for a number of weeks so she said they would leave it until after my next blood test when I'm due to have Zometa next week. I was told to stop the Tinzaparin injections until further notice because of the low Platelet count.
The way I see it if I wake up each morning minus any pain and without a body having all the rigidity of a Jellyfish then I'll be more that happy.

Good health to all.

Keith.

[tomParticipant]

Hi Keith

Well Thats Looking Good ? even if the Nurse want to give you more Blood?? am sure our Blood go up and down and its just luck that mine are taken on a good day Lol.

Am sure you will wake up with a Zest for Life and I hope am up with the same first Lol.

Argument Over 😎

Tom "Onwards and Upwards" x

[KeithH17Participant]

Thank's Tom for your very prompt reply. I must say you are always a great source of inspiration to us all.
Isn't it strange though that when they were telling me only a few weeks ago that my bloods were fine I was feeling absolutely awful while now? Sometimes I just don't get this whole Myeloma thing and I even wonder if the Docs do.

Keith.

[mhnevillParticipant]

Hi Keith

So glad you are feeling well in yourself, in spite of the low blood results. This is what is important isn't it!

Keep well. Best wishes for next week's readings.

Mavis

[tomParticipant]

Hi Keith

Your welcome and this reply is a bit later am afraid as I have been to work.

As for the bloods they are a strange thing and yes am sure its not all about bloods this MM as no one can get to grips with how some are doing great and others are always fighting it and its same Illness :-S as long as you feel OK and stay that way its Top Notch for you 😎

Keep well

Tom "Onwards and Upwards"

[BADGERParticipant]

Hi Keith

glad you are feeling better at the moment bit of a nuisence out the bloods have you thought about a transfusion i have had a few they do make you feel a bit better dont think it will effect sugars or any thing it might buck you up for the next round of treatment stay well
love Jo x

[VickiParticipant]

Hi keith

Sorry you are a bit up and down at the moment but glad you are feel well with it. Just wanted to add our two penneth of moral support 🙂

Vicki and Colin x

[PerkymiteParticipant]

It really is a strange old decease and that is for sure. But glad you are feeling on the up.

Kindest regards ? vasbyte

David

[DaiCroParticipant]

Hi Keith,

Let's get this right.

[b]HGB: 8.5

Nuets: 0.6

Plates: 32[/b]

and they offered you a blood transfusion and you refused.

However well you might be feeling IMHO it's a dangerous game you are playing Keith.

OK…HGB 8.5 is on the cusp… but it's not settled, its dropping. The same with your platelets which continue to drop to what I see as a level that should be causing concern. But your Neutrofils at 0.6, dropping from 1.8.to me is a major cause for concern. The flag goes up and the alarm bells ring whenever our Neuts drop below 1.0 qt our place… one silly cold, one trivial cough etc., and you could be in mighty trouble my friend.

However simple the ailment you will have nothing to fight it with and nothing to keep it from escalating… all for a matter of 6 hours or so, in relative comfort, with nothing to alter the status quo except by way of general improvement, by receiving life affirming blood.

My fingers and toes will be crossed for you until after your Zometa and the bloods that follow. If the readings were stable, or moving slowly upwards then I wouldn't be so concerned… but yours are dropping quite dramatically [b]while you are feeling good[/b].

Can you reconsider? And what does your consultant say? A nurse's say so because you have convinced her you are feeling fine is hardly a considered medical appraisal.

Me? I'd be shouting for blood, platelets and close monitoring of my Neutro's from a hospital bed… really!

Dai.

[KeithH17Participant]

Hello Dai and thank's for your comments on my post but I just want to clear something up.
I went to the hospital on Monday for a blood test before collecting the meds for my 5th cycle of Dex Rev.
This treatment although knocking the PP's down to virtually nil has also battered my blood counts in particular the Platelets/Neuts although the word Neutropenic was never actually said until I was admitted into hospital with a temperature of 38.5 and feeling quite ill. You know the saga about the diabetes so I won't go over old ground on that one but cutting the Dex to the first 4 days of the cycle 20ml on each of the days seems to have done the trick with single figure glucose levels and no more Insulin. When the hospital phoned me about my blood results on Mon the MM nurse had already discussed my results with the Consultant prior to contacting me and he said I was to stop my Tinzaparin injections due to the low Platelet count but that they did not want to change anything else until after my next blood test on Mon but be wary of possible infection and to check my temperature on a regular basis. As for blood transfusions it was mentioned but I did receive two just before my recent admission into hospital with little if any improvement but not a platelet transfusion. I did overhear 2 nurses discussing at what point are low platelet counts considered acute enough to warrent hospital treatment, some doctors saying below 70 while others say below 30 which is the level apparently taken by my own Doctor. (quite a difference between the two figures). What I will say is my present Consultant seems to take a somewhat different approach to the previous one I had who did seem to leave less to chance although that's not to say my present Doctor is any less competent but he does have a different way of doing things,of course the outcome is the most important thing and as I say I'm feeling pretty good at the moment.
I'll keep in touch Dai and once again thank's for your reply.

Take care.

Keith.

[HelenParticipant]

Hi Keith
Sorry it's such a minefield at the moment, I too would be a bit worried about those results, but this time 2 years ago mine were at that level just before diagnosis and if blood bank hadn't spotted it I might not know I had myeloma yet? So stay away from anyone with infection, take your temp twice a day, if its above 37.5 for 3 hours, go to the hospital, but I'm sure you knew that. Hope you pick up soon.
Love Helen

[eveParticipant]

Hi Keith
When you feel well the last thing you want to do is spend time in hospital,it was always a fight to get Slim there when I thought he needed to be checked over,you tend to think you know what is best,but I know from Slim there is a fine line between being well and being confused and he crossed it many a time.

The platelets below 20 is considered to need them,it is the neuts that can drop so drastically,I would agree with Dai,all these conversations nurse to doctor to patient,all third hand,dangerous.If you were an in patient you would be hooked up to drips by now.Love Eve

[KeithH17Participant]

Update as promised…Had blood test this morning prior to Zometa on Wednesday. Got a call with the results which is good news. HB up from 8.5 to 10, Neuts up from 0.6 to 1.2 and Platelets up from 32 to 37. Still have to stay off Tinzaparin until Platelets get up to a nearer normal level. Sugar has stabilised to single figures and temperature has stayed at around 36 so all seems to be ok although I stay vigilant just in case of any changes. As I've said previous this is the best I've felt for some time and long may it continue. My weight has levelled out at around 75 Kilos and after reducing the steroids down to just the first 4 days of each cycle thereby allowing my body to recover the muscles in my arms and legs have now become stronger.

Hope all is well with everybody.

Keith.

[andygParticipant]

Hi Keith.
Good news about your blood tests. Now all you need is your platelets to continue climbing. Then you'll be back to stabbing yourself again 😉
Good luck Keith
All the best
Andy

[tomParticipant]

Way to go Keith, Keep well and stay strong 😎

Tom "Onwards and Upwards"

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