copper deficiency
 

Hi Chirley, That is wonderful that the treatment cycles are longer and that your counts are staying up. Hopefully they have finally figured out how to treat you. I hope the trend continues. tytd

Glad you are feeling better. Wondering if a mild anti-anxiety before treatment might help Just a thought.

Glad you get to extend your treatments and that they're going better!

I'm glad you have more understanding and open doctors now Chirley.

Deb

The things you find when you Google
 

Hi,
I just happened ;) to Google my chromosome abnormality and came across a website which pertained to a research trial asking for participants with the 15 q deletion. The page didn't have a date on it and it was for US and Canadian people only but I emailed the address given, gave them my details and sat back expecting not to hear anything.

Imagine my surprise when I received an email from the scientist running the trial. The trial is still current and they are willing to screen me as a participant. In that one email from him I already found out that no other person (that he has dealt with) has a copper transport problem associated with this deletion and that my disorder is, on the balance of probabilities, coincidental. This gives me hope that it may also be curable.

I'm very excited to have found this research trial and I have my fingers crossed that I'll be accepted.

Regards

Chirley

Great news! Good luck!

Copper
 

Very interesting, Chirley!
Kind regards
Birgitta-A

Accidental information
 

As I'm entering a research trial I requested an official copy of the results of my chromosome analysis (karyotype micro assay). Instead of receiving this, I received a copy of the gene study that was done at a Swedish University and that I had been told was negative for the Apt7ase mutation. That was all I was told about this test.

Well, it is negative for THAT mutation but they performed gene studies on neighbouring areas as well. They found three mutations, one of which they have never found before (but is associated with an amino acid called GLU) and another one which has been found in another patient with a copper transport problem. Genetic counselling and ongoing reinterpretation are recommended. I don't think anyone has looked at this report. I suspect they looked at the summary at the end which says negative for APT7ase mutation and filed it.

so now i have 3 homozygous mutations, a heterozygous mutation and the chromosome 15 deletion (that we know about).

I'm very pleased I never had children to pass these on to.

Now it's back to the drawing board and try to get the report I originally requested.

My Physician just rang. My blood test from yesterday is still very good. I'm being admitted next Thursday for copper infusions and will be in hospital Thursday through Monday but only because he is going away for a few weeks and wants to be proactive in keeping my counts looking good.

So now I'm having a smaller dose of copper on fewer days with more time in between and my counts are holding steady and mentally I'm coping a lot better. It's so good to have a doctor who listens and is willing to work with me.

Regards

Chirley

Copper
 

Very positive, Chirley, that you at last have a doctor who respect you and your experience of your complicated disease!
Kind regards
Birgitta-A

Copper
 

Chirley....so happy that you are doing better than a few weeks ago....did you get your eyes fixed up.....kate

Hi, my eyesight has improved with a combination of having the copper (at least now I know there is a definite cause/effect) and new glasses.

I still have intermittent loss of vision in specific spots. For instance right upper quadrant just disappears from time to time.

I have an appointment to see a neuro ophthalmologist in November but I think I'll cancel because there is a three hundred dollar gap between Medicare refund, health insurance and consultation fee. It's not the money so much as the overcharging that annoys me. Some doctors are just plain money hungry and I don't want to support that greed. Medicare is supposed to cover the entire cost for pensioners (me) or 75% for non pensioners so the gap in this case is exorbitant.

I think deep down I must be a bit of a socialist.


Regards

Chirley

Chirley.....keep the app't then tell him you are going on this big trial....maybe his name will be mentioned in the name of research .....he will forgo the $300.00....Ego is often bigger than money...kate

Hi, I'm in hospital (bored,bored,bored) for my copper infusions.

My blood tests yesterday had all dropped (but still very good in the scheme of things). Hb 100, WCC 3.0 (no neut count given), platelets 130. So it looks like I will be given copper infusions every sixth week (5 weeks between). That's so much better than the two weeks in between that I had been getting.

I'm grateful that I feel we'll enough to be bored.

I asked my Physician if he would write a letter to the bariatric surgeon recommending weight loss surgery. First off he said no! Then he said wait and see if my health stabilises. Then he said...."I'll think about it".

After he left I asked the nurse if she thought he'd agree. She said that it was all doctor talk for NO.

I've just been interrupted by a nurse with a stat dose of Hydrocortisone. The doctor saw my copper rash and was very impressed at how gross it looked :o. Luckily enough it looks worse than it feels this time.

She's...back.....that is the Chirley we know & love....you must be feelin' a whole lot better....
You must be getting ready for summer as we are getting ready for fall...the leaves up here are starting to turn...make sure you eat your veggies....Kate

I'm very surprised, the Physician has agreed to refer me to a bariatric surgeon. I think it was because I saw the physiotherapist today and he wrote a very negative report about my mobility.

The physio wants me to wear a back brace, a knee brace and an ankle brace so that I have some core stability when I walk with my walker. He thinks its important I have hip surgery to help correct my gait and improve function.

I need to be fitter before any one will operate on me......ergo...bariatric surgeon.

Chirley

Don't know if its good or bad
 

Hi, I had my fourth dose of copper yesterday. Just towards the end I started getting that familiar throbbing bone pain that comes with bone marrow regeneration.

I'm confused. It's good that my bone marrow can regenerate but this time my counts were all pretty good (for me), so I don't understand why I would get the regeneration pain.

Does anyone have any idea how long it takes for the peripheral counts to drop after the bone marrow starts failing? I know that my first to fall is usually the neuts, then the RBCs, then the platelets.

I am starting to think that my marrow only just lasted the 5 weeks (counts did fall in last week) between copper treatments.

Would this continuous depletion and replenishment of my marrow have any long term effects. Would there be more likely to be chromosome damage or fibrosis.....something like that?

If there are drawbacks to treating at 5 weeks I would rather treat at 4 weeks and avoid long term consequences. Especially now that the doctor listens and the side effects of the copper are more tolerable. I know my marrow is sparse anyway because every MRI comments on empty marrow in my bones.

Where can I get answers to these questions? I'm not seeing a haematologist at the moment and I doubt if the Physician would know.

Copper
 

Hi Chirley,
As far as I understand there are no rules for how different drugs will affect the bone marrow - how soon the HGB, WBC and platelets will increase or decrease when the drug isn't working any longer.

When I started to take Thalidomide the platelets responded after 4 weeks, the HGB reached max after 15 months and I could stop taking Neupogen after 17 months.

I have never felt any bone pain except when I had to take Neupogen every day during 9 days. As you know it is a cytokine and stimulates the bone marrow like the copper you are receiving.

Perhaps your bone marrow will function better if there always is enough copper for the stemcells.
Kind regards
Birgitta-A

I feel a little bad for posting this when others on the forum are going through a terrible time but......it's 4 weeks since my last dose of copper and my Hb is ....152!!! It has not been that high in 10 years. I'm not used to it and feel a kind of hot, flushed feeling but I think I'm just feeling like most people do.

I only had a finger prick in the surgery so no WCC but I feel great. Now, to work on this decrepit body of mine and try to make it function better. I was supposed to have a "real" blood test today for hospital admission for copper next week but the Hb is so good I'll have the "real" blood test next week and see if I can have 6 or 7 weeks between copper treatments.

I see the bariatric surgeon in two days so hopefully my medical condition is good enough for surgery.

Regards

Chirley

Copper
 

Hi Chirley,
It is almost incredible that your bone marrow has responded so well to the copper treatment! Congratulations!!!
Kind regards
Birgitta-A

Yes Birgitta, it's almost unbelievable but I'm over the moon about it. Even better is that if we let the copper drop and the Hb drop a little too then have copper and let my body manufacture the blood, it uses up my iron stores.

It's an easy way of doing the same thing as a venesection. When my ferritin drops to normal levels, I'll have the copper infusions often enough to keep my Hb in normal range so I don't become iron deficient.

The move to this doctor was the best thing I've done for my quality of life and my health. I feel a little guilty saying this because I really liked and trusted my haematologist too but sometimes both the doctor and patient can change attitudes and its best to move on.

I'm also pleased to read that the Revlimid is working for you. I hope you don't get many side effects.

I hope you had a nice summer. I suppose the days are getting cooler and the days getting shorter. I don't know how I'd cope with a Swedish winter. It's bad enough here and our day time temperature is around 18-22 degrees Celsius in winter.

Regards

Chirley

Excellent news Chirley. Good to see you happier.

There are a few girls at my work who have had the surgery some with good results some not so good. They all had to lose weight first before they were accepted. Would such dietary changes before or after affect your condition or create another deficiency?

On another note the girl at work who had the best results out of all of them, didn't deserve to, every time I walked past here she was gobbling down chips or chocolate, while the others snacked on a piece of celery or similar....go figure. Ugh! Just made her even more snooty and ruder than her larger self in a now I am fabulous way...bleh..makes you wonder how some are blessed, when others more deserving get the harder road.

Honey

Chirley - after reading your posts I asked my haematologist if I could have my copper levels tested next time and she has agreed.

Hi Chirley,
That is such great news about how you are doing. And after so much sad news lately, I think everyone is glad to read something to be happy about!
Thanks for the uplift and keep up the great work!
Best wishes,
Sally

Incredible response...

I've read so much on Marrowforums about the importance of vitamins & minerals (B-complex, Folate, copper, Vitamin D3)... And it seems to be working...

In my case I've always taken B-complex, and multivitamins, and I believe that the D3, and 'new' multivitamin with copper that I've started taking, has definitely made a difference...

Continued good health Chirley, and everyone else on here... :cool:

Wow Chirley,

That is amazing. You must be so happy.

Did you change anything about your treatment like the type of copper?

Deb