Unexplained Rapid Haemoglobin Decline

Dear friends, many thanks for your quick replies and good wishes.
I'm waiting for a call from my oncologist's secretary this morning.
With luck I'll be added to the clinic list this afternoon.

Ian Pedley (my onco at Newcastle Freeman Hospital) has looked after me brilliantly for 13yrs.
He's the man I need to see a.s.a.p.

Lyn, those were very pertinent questions.
I really was 100% fit before the new meds.The tests I had done were the full bloodwork,U's & E's etc, a chest X-ray, heart trace and a physical examination.
I know Hb was a low 80 at 1.30pm last Tuesday, and was 71 when tested in A & E at 8.30pm the same day.

I have no idea what it is now after the transusion and will phone my GP to ask when I need re-testing.

And the question about whether I was eating OK during the first three months of this year is spot on.
During the severe depression I had no appetite, and quite honestly, my wife Lynn had to practically force feed me!

I did lose 10lbs, and I'm back at my fighting fit weight of 10st 7lbs.
However, full blood tests prior to my return to Zoladex on March 28th showed excellent results. Hb was 131, and it was always in that area.

On hearing I'd lost weight, the A & E doctor immediately leapt to the conclusion it might be bowel cancer or an ulcer.
I did try to explain anout the weight loss and previous good blood results...but he wouldn't listen. Just wasn't interested in any other explanation such as the new meds I'd had to stop, or any possibility of cancer activity in my lymphatic system.

Predictably, the next step for him was to arrange a colonoscopy and endoscopy.
Because of previous bad tretament at this local hospital, I will do nothing till I see my oncologist.

If such procedures are needed, in his opinion, I'd rather they be carried out at my main cancer hospital.
Also, Newcastle now has a brand new CT scanner which captures amazingly detailed images, and I'm keen to have that done.

GreatOakTree (I wish I knew your first name!), your dad Frank is having a terrible time of it. It makes my problem look so small in comparison.
I am so sorry, and shocked to read of his ordeal, 18yrs after Brachytherapy.
I have never heard of this happening so many years after a very successful treatment with Brachy.

And yes, If any light is shone on my Hb puzzle today or in the next week, I will certainly post the details.

Lyn, I really do prefer everything in Black & White. Just as well I do, innit? I can see Sunderland's derby matches being against South Shields in a few years time.

Here's a thought, perhaps the shame of seeing unrelenting failure for the last few years at The Stadium Of Light has made 1000s of North East guys ill.

I hope the new owner changes the name of the stadium. It's too easy for Newcastle fans to alter the current name to one which is probably very appropriate.

Once again, thanks my friends,

Let's all stay strong and positive (and stubborn.........and defiant!)

George

Edited by member 08 May 2018 at 10:15  | Reason: Not specified

HI GUYS AND GODDESSES!

It's been a LONG time since I posted. It's all a bit of a blur, but I've just updated my profile, and you can see the full story.

Anyway.....Good news. My engine is ticking over again. Soon it will move from idling to gently accelerating.

After five months of very worrying (and even scary...a first for me!) ill health, I suddenly realised on Thursay night that I'd had a good day. Friday and Saturday were OK too, as is today. I'm not breathless and suffering dizzy spells all day anymore, just small episodes.

It's miraculous, and I’ve had absolutely no treatment.

I did see the consultant cardiologist (at last), on Fri 14th Sept. That was a full three months since the heart trouble was spotted on two scans. And the doctor was one of the good guys, I'm pleased to say.

He wasn’t keen to do any radical intervention, as there had been an improvement shown on my last echo cardiogram. And, believe it or not, he took me along (mid appointment) to have a third echo scan, and watched as the physiologist did the scanning.

When we went back into his office, he told me the fluid level had lowered again, and there was a good chance it would go away naturally. I'll be scanned again in a few months time ahead of seeing him next.

It seems all this has been caused by a severe chest infection back in April.

It hadn't completely cleared, and caused a gradual build up of fluid around the heart, to the point when I started feeling so weak.

Even more good news, he told me that my haemoglobin had finally risen to a normal level after plummeting from 130 to 70, and the blood transfusion that followed on 1st May.

It's taken a long time, but the doctor told me it was up to 124. I was, in football parlance,’ over the moon’.

Hey, speaking of football, perhaps it was Sunderland’s rapid drop down the divisions that set all this off.

Complete rest, no exertion at all and trying to keep stress and worry at bay have been the key to getting better.

i HATE to say this, but we have to remember we aren't young and fully fit these days. :cry: Trouble is, nobody can convince us of that. In our minds we are 19 (well I am!) and all too often we think we're supermen, We've been kidding ourselves.

I swear my recovery is down to the complete easing up on everything. No dashing here there and everywhere. Whenever I did try to over-exert myself, I paid the price for it.

Well, I'll finish now, with another motoring pun. I'm still here with engine idling, and feel like a learner driver, nervous and shaky about putting the accelerator down, BUT it will get pressed to the floor in the very near future!

I promise to be sensible. No more dashing about till I'm truly fit again.

Can't type quickly yet though (a bit dozy). I hear you all say "Nothing new there then"! :lol:

Stay well my friends, and remember, these glitches are sent to try us. Just get mad as hell and then plan your battle.

George

Edited by member 23 Sep 2018 at 16:28  | Reason: Not specified

But hoping the doctors can find a reason quickly

Lots of love

Devonmaid xxx

You don't like black & white at all, unless you are changing allegiance to a proper team at last!

I hope that you are correct in thinking that the two meds have not combined well. What tests did they do and when do you get the results? Were you still eating properly while you were depressed?

Crikey George,

Hope you find out soon 

I have no idea what it could be 

Regards Barry

Hi George
Glad things are on the move

Barry

Things are a lot better.

I've gone a week with no bad episodes of fighting for breath. It seems no coincidence that the improvement started when I decided to cut Atorvastatin back to 10mg.

Had a good chat with my Oncologist on Tues 15th May, and he certainly wasn't happy that a vascular surgery registrar had increased my statin to 40mg, even thought I'd done so well on just 10mg for 6 years. My femoral artery trouble had really settled down.

I'll be having a scan by that shiny new state of the art CT Force machine soon, BUT.......my onco does say I really do need to have the 2 procedures I was trying like crazy to avoid,

Endoscopy and Colonoscopy. And do you know what these jovial consultants call that? I'm to be 'Topped and Tailed'.
Laughing? I can't start!

Yep, I am not amused, ; )

Next step is re-testing of bloods this coming Tuesday. If by some miracle haemoglobin has fought its way back to 130, It will feel like a lottery win!

Many thanks for all you messages and emails. Your support has meant a lot at a time I really was shocked and worried.

You're all stars!

Hoping to see loads of you on June 23rd at The Mill On The Soar meet-up.

Stay well my friends,

George

Sorry you have had this set back George and hope you continue to improve. Look forward to seeing you on 23rd June.

Sounds like your guy has a plan and is being proactive.

""Endoscopy and Colonoscopy. And do you know what these jovial consultants call that? I'm to be 'Topped and Tailed'.

Laughing? I can't start!""

Have you looked at the definitions.

Hope all goes well and take care.

Thanks Chris

I was also topped and tailed about 18 months ago. Like Lyn says the 24 hour flush out is the worst part, that and the preperation diet. I opted to have sedation but it didnt work and I watched it all on a tv screen. If I had it again I wouldnt bother with sedation as its a breeze and actually interesting to watch if your up for it.

Good luck with the results.

Cheers

Bill

In my case they spayed some anaesthetic in first. Then the cosultant said try to swallow. You cant actually swallow but the action of trying opens up your throat. As I did that he inserted the endoscope. I remember having to concentrate on relaxing and then saying "hell was that it" it was so quick. I have a very strong\sensitive gag reflex and it really was still OK. Its hard to explain but I didnt actually get that reflex, maybe because something is actually in your throat rather than approaching it like you describe with your fingers in you mouth.

Good luck

Cheers

Bill

Thanks Ian,

Man, you have had a lot of 'oscopies' in a short time.

Funnily enough, I had been thinking about getting a sedative for the endoscopy. Now you've convinced me.

And yes, I'd say the same ....'Max dose please!'

Thanks for that Ian.

George

Edited by member 12 Jun 2018 at 15:30  | Reason: Not specified

Hi George

Had one last year with just throat spray. No prob. As Barry said really. For me just a bit boring so looked at screen a few times - interesting.

Good luck and keep winning.

Ray

Looking forward to seeing a rejuvenated George at the meet next year. Meanwhile, carry on doing things the same way which have worked so well

Good to see you back, George, you’ve certainly been worrying us.

Time to put your renewed energies into remembering not to dash around so much and enjoy life again, you’ve had a tough few months.

Take care, Janet, x 

They claim that the lymph node trouble in my neck is very unusual, and they are not convinced it’s to do with my Pca. Up until now I’ve had nothing but praise for the team that is looking after me. Things have always happened so fast. Hopefully the Pet Scan I’ve got coming up on Thursday will sort things out, an FDG scan is a first for me.

However I’m convinced that they will finish up zapping the darn thing, and they were at this point nearly 3 months ago. I’d even had an appointment all set to make a frame work so that I couldn’t move my head whilst in th RT scanner, which they canceled in lue of the biopsy.

Every change of idea just keeps adding more and more weeks.

Stu