Copper deficiency induced bone marrow failure

[SLB]

Fingers crossed that this gp is a good advocate for you Chirley. Though you do a fantastic job of doing this for yourself! Good on you!! Sharnie.

[Birgitta-A]

Hi Chirley,
Congratulation to the new GP - hope you will be able to continue the treatment with as few side effects as possible!
Kind regards
Birgitta-A

[Lbrown]

Good luck Chirley. I can't believe the hassle you are going through, there's no excuse!

Deb

[cathybee1]

I'm so glad you were able to find a new GP so quickly and that you "clicked." Keeping fingers crossed that you will be able to find a new treatment center quickly too.

[Chirley]

I saw my new GP again today. He was not happy that the letter he sent to my previous daycare wasn't responded to. I, however, am not surprised. Not one letter ever written to my haematologist by my previous GP, neurologist or Prof was ever delivered to him. They all ended up in some daycare blackhole and I would have to get copies of the original and give them to him personally.

I have been referred to the local public hospital oncology daycare. I'll wait and see what eventuates.

I was given copies of all correspondence and investigation reports and told to carry them with me to all medical appointments.

I was interested to see that my diagnosis is still officially MDS. The last BMB result (taken months after having a stable copper level) still showed dysplasia in all three cell lines but at least my blast count had fallen to below 5% again. This may explain why my platelets are still falling slowly and steadily.

The GP said my diagnosis is really a moot point as long as my counts keep responding to the IV copper and that's exactly what I've been thinking for quite a while.

Now it's a matter of wait and wait rather than the years of watch and wait that I've already endured.

I'm actually feeling quite well but I suppose at this stage I've only missed two doses of copper.

Regards

Chirley

[cathybee1]

Glad you're feeling well, and hope you new GP can stir the pot a little!

[Chirley]

I just received a phone call from the new oncology daycare unit that I have been referred to.

I have an appointment to see the haematologist next Wednesday and they have contacted my old treatment centre to have my medical records released. The old centre said they would contact me and get my permission. This was last week. I haven't heard from them and was unaware they had been contacted.

If my records aren't released I won't be able to have treatment until the new haematologist is satisfied that my diagnosis is correct. (understandably).

I can't believe the old treatment centre is being this obstructive. Perhaps they don't want to be found at fault for administering my copper at the wrong rate.....who knows!

I just want this to GO AWAY.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
You are probably right when you think that doctor at the old treatment center doesn't want to be found at fault for administering my copper at the wrong rate.

Can't you contact them and tell them that you want the records sent to the new treatmenr center.
Kind regard
Birgitta-A

[Chirley]

Hi, I contacted the treatment centre myself and the secretary I usually dealt with told me that management had not asked her either for my files or for her to contact me. She also said that there was no record on the computer that I had refused treatment or changed doctors.

Carol gave me her email address and we circumvented the organizational obstruction by sending her my permission in writing to release my records, who to release them to and the fax number of the new centre. Carol is going to deal with it personally. I hope she doesn't get into any trouble.

Carol sent me a receipt for my email with a personal note that was very supportive and wished me well for the future.

I feel a little sad that the centre I have been attending and where I have developed friendship and respect for the staff, have such bad management and are so profit focused that they are willing to sacrifice staff morale and patient care.

Oh well, time to move on..regards

Chirley

Ps my doctor has not written the discharge letter I've requested either.

[cathybee1]

Glad there was a fix, and hope you develop new friendships at this treatment center.

[Chirley]

Hi,

I went to the new daycare yesterday and was assessed by a Registrar and then the Haematologist. I have been accepted for treatment at the centre.

There are two issues.....the Haematologist whilst agreeing to oversee the copper treatments will not take responsibility for the underlying cause of the problem. He told me that it is well outside his scope of practice, that he doesn't know anything about copper transport mechanisms and he will ONLY monitor my blood copper levels and provide the treatment. He told me I had to find the appropriate medical practitioner myself. I don't know what kind of doctor I should try to find to care for the whole syndrome as opposed to just the treatment component. The Prof that I used to see says that I don't need to see him any more because he can't help me, and the neurologist I used to see doesn't want to monitor my condition...he only wants to see me if I have an
acute deterioration.

Any ideas? Would a General Medicine Physician be okay, or maybe an Endocrinologist. Do I need someone to oversee the underlying syndrome at all?

The other problem is that this new daycare NUM assured me that they could access the Copper Sulphate easily...then I get a phone call this morning from her saying that the pharmacy hasn't been able to access the Copper but they are still working on it and she is still confident. Fingers crossed.

If the copper is available, I'm due to start treatment on Monday.


Regards

Chirley

[cathybee1]

At least the hematologist is being honest with you. Ugh,it sounds like you're being thrown to the wolves.

[Birgitta-A]

Hi Chirley,
You said a long time ago that Your Professor was one of very few experts in copper diseases and you can probably not find another expert. Perhaps it will be impossible for you to find a doctor who can oversee the underlying syndrome.

Hopefully you will get the treatment and evaluate the effect on your neuro-symptoms yourself. Then they will monitor your copper level in blood and your counts.
Kind regards
Birgitta-A

[Chirley]

I received a phone call this afternoon. The treatment planned for Monday has been cancelled....they couldn't get the Copper but they are hoping to get it on Monday for treatment on Tuesday. I'll just have to wait and see.

I think I've decided to find a neurologist who is willing to be involved in my long term care. I feel that my neuro condition is very slowly deteriorating and it would be good to have someone to monitor any changes. Perhaps this will satisfy the hematologists concerns about the underlying syndrome.

Regards

Chirley

[Birgitta-A]

Hi Chirley,
Good if you can have contact with a neurologist and at the same time the hematologist will perhaps be content as you wrote.
Kind regards
Birgitta-A

[Bambam]

I find all the talk about Copper interesting and a new topic for me in this rotten journey called MDS.
Always interested in maximizing wellness in order to offset illness, I have joined an amazing Integrated Therapy Program that is a "club" or sorts for people with any sort of cancer diagnosis. Our provincial government believes so much in the concept that they are contributing to funding - hitherto unknown. If you check the website, you will see that this Program is attracting much positive attention here in Canada. Their two day LIFE program is fantastic and once joined, access to their enlightened and dedicated Medical Doctors is easy and generous, with 30 minute appointments available for the asking. These doctors are not replacements for others in the system, but work in conjunction with them to fill the gaps in the treatment circle.
My "Inspire MD" has drawn up my personal "Life Plan" and it includes meditation, exercise, nutrition etc. as well as high quality supplements. All suggestions are based on documented research studies.
I have been advised to take 3000 mg. Vit D daily (levels will be tested and dosage adjusted if necessary in 3/12), 1,000 mg daily of DHA/EPA (Omega 3) and to AVOID a multivitamin supplement that contains copper or iron.
Would welcome your comments ...