New treatment centre

[Chirley]

I started shivering and after an hour or so it occurred to me to take my temperature. (Duh!)

It's 39*.

It's now evening again and I still feel unwell. I took a Neurofen this morning and I felt better for about 6 to 7 hours (sweating a lot). Besides generalised kind of flu symptoms, I don't have anything specific.

I wasn't told my CBC results so I have to assume they were normal. My only risk factors at the moment are the the recent steroid use and my portocath.

I've decided to take a bit of a risk and stay home. If I still have a fever in the morning or I feel worse then ill go to the ED.

All these small decisions just become plain annoying.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Too bad with the infection! Hope your flu symptoms will decrease and that you won't get some other infection while your immunesystem is trying to fight the virus.
Kind regards
Birgitta-A

[Chirley]

Hi, feeling better today. I still have a fever from time to time but only up to 38.5

I got a bit worried this morning when I used my electric toothbrush as usual and next thing blood was filling my mouth. I rinsed about 8to 10 times and the blood kept coming. When I looked the blood was just oozing out of my gums. They aren't red or sore (I've had generalised tooth and sinus pain for three days).

I could taste blood on and off all day. Tonight I switched to my baby toothbrush and was as gentle as I could be but once again the blood just oozed from my gums.

I really feel I have just managed to catch some virus and I am getting better.

Should I worry about my gums bleeding? I have good dental care and take care of my mouth and teeth so this is unusual for me.

I don't have any unusual bruises or spots.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Hope you continue to feel better!

Bleeding in the mouth and from the nose can be a sign of low platelets as you know. The virusinfection can have decreased the platelets. Hopefully they will recover when you recover.
Kind regards
Birgitta-A

[Chirley]

Day 7.

My muscle soreness has eased a little as has the joint pain but I still have daily headaches of varying severity.

I am still getting evening fevers and last night it was 39.3 again.

I'm starting to get become very tired of feeling like this. I'm so lethargic that I quite often go all day without having a drink because I just can't summon the effort to go to the kitchen and get something.

I have also developed a tender red lump over the vein in my left antecubital fossa. It's a bit like having a slightly infected IV site or blood taking site. It's also a little warm to touch (actually like 3little lumps in a triangle shape). I haven't had a blood test in two weeks and that was taken on the right arm. I just have a feeling that its somehow connected.

I think that if my fevers haven't gone by next week when I'm due for more copper that Ill cancel. I don't think having those steroids while getting fevers is a good idea but I will ring the centre and take their advice on that.

Regards

Chirley

[SLB]

How awful Chirley. I really hope you are feeling better soon.

[Birgitta-A]

Hi Chirley,
You know that it is important to drink much fluid when you have fever. I remember that once before you didn't drink enough and ended up dehydrated - very dangerous.

Most dietists participating in conferences for patients tell us that patients with leukemia-like diseases should drink 8 glasses of fluid extra each day. I have done that since dx - it means that I drink 4 L/day. It is much but I don't mind drinking water, tea, juice, milk, yogurt etc.

Hope the lump (infection?) in the vein will disappear!

Steroids are really not OK when we have infections.
Kind regards
Birgitta-A

[Chirley]

Overnight I have come out in multiple red lumps in both antecubital fossas. They are warm and tender to touch.

I think the time for staying home and waiting for the fevers to pass has past.

I suspect I have some kind of systemic illness, I just hope I haven't developed this from my copper sensitivity.

I have an appointment with my GP later. I hope if nothing else, he can reassure me.

Regards

Chirley

[Chirley]

Okay so my GP says I have a bacterial infection and need antibiotics. The lumps in my elbows are thrombophlebitis caused by inflamed blood vessels secondary to whatever infection I have.

He also said not to have the Dexamethasone/copper infusions next week.

I rang the treatment centre and told them that I needed to cancel next week. They rang back and told me the haematologist said I had to have both the steroids and the treatment. Who do I believe? What am I supposed to do? I suppose at the end of the day, I have to trust the specialist over the GP.

It would be really nice to know just where the infection is. No one has taken a blood test or cultures, it's getting kind of frustrating.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
As far as I understand you have to go to the ER and get treatment for the infection when they have tried to decide what bacteria is causing the infection. As we know that is often not possible so they try some broadspectrum antibiotic drug.
Kind regards
Birgitta-A

[Chirley]

Hi. I haven't been having copper treatment for about three months. My GP agrees with my decision given that I required increasing steroid cover for decreasing copper doses and still felt unwell.

Long story short. My GP ordered my first blood test in months. My copper is so low as not to be measurable BUT my CBC is not ""too bad". (He didn't elaborate further and I was happy with that). Unfortunately my B12 has fallen again and I need more injections which he thinks I will need forever.

The most unusual thing and one that I have not been told about before is that my calcium level is very low. I told my GP that I had been having increasing hands spasms and cramps which I attributed to my neurological disorder but it turns out I have been getting tetany. I didn't tell him that I have also been having episodes in which I have felt my heart beating erratically which has caused me to feel faint and breathless. I have written here before about not being able to breathe and thinking I was having panic attacks but now I'm not so sure. Low calcium can cause heart arrhythmias. Perhaps I'm not suffering an anxiety disorder after all. The GP says I need this treated sooner than later. I have an appointment with a physician on Friday and will be interested in finding out the cause. I have had extremely low Vit D levels in the past which was treated but I have never had this tested again. Low Vit D can cause low calcium.

My GP seems amazed that I'm doing as we'll as I am considering my copper status. Fingers crossed that my bone marrow continues to function and my neurological condition doesn't deteriorate......so far so good

Regards

Chirley

[cathybee1]

Hi Chirley,

You are a remarkable person in the way you have dealt with so much uncertainty and shifting symptoms. Thanks for the update. It's wonderful your CBC is holding. I hope the calcium supplementation helps -- and glad the doc is taking this seriously.

Hugs, Catherine

[Chirley]

Hi Catherine, I hope you and Bruce are well.

I have had a wonderful break from hospital and doctor visits and I feel much more settled.

If I have no copper and my only problems are low B12 and calcium, then, I'm a happy vegemite. Hopefully treating both of these will be easy and I'm hoping to remain well.

Regards

Chirley

[cathybee1]

Hi, Chirley!

Yes, Bruce and I are still moving forward (slowly).

He is still on a 4 week transfusion schedule, and though that isn't major, it is still an improvement and he is feeling better between transfusions.

It is all about quality of life right now.

[Lbrown]

Good luck Chirley.

Deb

[Birgitta-A]

Hi Chirley,
Good that your bone marrow manages so well when the copper level is so low and that the neurological symptoms not have increased!

Hope the treatment for B12 and calcium will have effect! I have been taking B12 (and folic acid and B6) every day since dx 2006. B12 is very high. My doctor says that persons that take B12 every day seldom get B12 defiency.
Kind regards
Birgitta-A

[Chirley]

Hi,

I saw the physician today. He did a test and I didn't get tetany so the low calcium isn't the cause of my hand spasms

He also told me that I have got a degree of bone marrow failure because my platelets and WCC are low ( no numbers given), on a positive front...I'm not (yet) anaemic.

I am getting a cardiac arrythmia (ectopic beats) and he has given me a prescription for that.

He has agreed to take over my holistic care and for that I'm very grateful. He will ring me in a day or two with his treatment plan.


Regards

Chirley

[Birgitta-A]

Hi Chirley,
Hope this doctor will continue to take care of all your symptoms, knows what he is doing and is kind!
Kind regards
Birgitta-A

[Chirley]

Thanks Birgitta, I'm very disillusioned with doctors at this point in time. I have seen this physician before (he was the doc that referred me to the haematologist) and he was very honest and easy to talk to. He is willing to either do supportive care with transfusions, antibiotics etc or to investigate other methods of copper replacement treatment.

I'm not getting my hopes up, I will wait and see how things work out.

Regards

Chirley

[Chirley]

I had another blood test last week and my GP rang this morning to tell me that I am now officially severely neutropenic (0.4) WCC is 1.0

I think I'm doing a lot better than I expected and even though my Hb is dropping too, I still manage quite well.

My GP is starting weekly blood tests to keep an eye on things.

In reality I don't mind the bone marrow issues and have managed well in the past with neuts as low as 0.0. I'm more frightened of worsening neuro problems. Luckily, so far so good.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Yes, I remember that your neutrophils function very well. Still we hope that you will be able to restart copper treatment so your counts won't continue to decrease.
Kind regards
Birgitta-A

[Chirley]

I forgot to mention that the physician rang me and told me that there didn't seem to be any alternative forms of copper. He is going to speak to a haematologist that he knows about how best to treat me if copper isn't on the agenda.

Regards

Chirley

[Chirley]

I received a phone call from my GP yesterday. My ANC is now .19 and my Hb dropped from 126 to 102 in a week. Then my physician rang and told me my platelets had dropped from 145 to 64 in that same week.

My GP wants me to go to hospital (worst place to be with low neuts, I think) and the physician says he's happy to work with whatever my wishes are. I am having a repeat blood test today and then the physician will ring me and give me his recommendation.

I still feel well and am tempted to ignore the results at this time but I will listen to the physician and decide what to do after I speak to him again.

Regards

Chirley

[cathybee1]

Not good news about the numbers, but very good news your doctor is willing to work with you. I'm thinking of you. Hugs.

[Lbrown]

Good luck Chirley, how do you feel?

My counts last Thurs ANC was 0.16, platelets 27. I am supposed to have a molar removed in 2 weeks (requires dental surgery) and he wants to see my platelets above 50. I've quit the bactrim I was taking in hopes my platelets will increase.

Deb