Watch and wait ends, Vidaza begins.

[Gloria J]

Chirley,

The treatments, meds, blood work - all of it is just so exhausting and wearing on your body and soul. I think, in the end, we all have to make the best decision for us. I wish you strength, keep your chin up,

Gloria

[cathybee1]

It's SOOO good to hear from you, Chirley. Am I right that your RBC is holding despite the drop in copper. That sounds like good news -- but bad news about the new parasthenia. Sent you a private message about Bruce's copper. The bottom line is he is not gaining much ground, and we're waiting to hear back from our family doctor, who so far is the only one willing to take this on.

Susan, I am so sorry for what you have been through. I can relate a tiny bit, having had a over year long personal fight about a workman's comp claim. The fighting and dealing with bureaucracy was totally beyond me at times, and I wasn't dealing with a bone marrow disease.

To both of you -- Bruce took a break from doctoring last fall. I was not for it at the time, but it turned out to be a very wise decision. The patient knows best what they need and when they need it.

[Susan L]

Thank you for your support. My husband is going thru some tests himself right now and as it is just the two of us - I want to put my attention and energy into supporting him right now. I am being careful - washing hands etc.. and counts are holding except for wbc's - so I will wait for alittle bit. Best wishes to you and your husband.

[Chirley]

I feel a little anxious. This will be the first week without a blood test since September 2010. Just kidding but it does feel odd.

I do have request forms for weekly blood tests but I made a decision that if I'm not going to have treatment, then, there's no point having the blood tests. However, it's taking some willpower not to go and have one "just to see" how I'm going.

It's a bit like knowing every part of your blood test result, it's frustrating to be told "your Hbs down" and not be given a number. My haem doc said that all his patients are OCD about their numbers and that's why he's no longer giving them copies of their results. He thinks it'll stop them being so anxious. AS IF!!! anyway, his heart's in the right place.

Still feeling okay, I don't think I'm anaemic yet. I've had one rehab session and was given very positive feedback on the potential for improvement. This is in total contrast to my neuro doc who was very negative about it. I'm about to go for my 2nd session, so talk later.

Regards

[Helen Robinson]

Hello Chirley

I have been wondering how you are progressing. I did not remember that you were now Tx free. That makes not having regular tests reasonable but you should not let yourself become too anaemic and cause damage to your organs. I guess your body will tell you. I admire your will power. It is a fine line between not worrying about the results and panic. Have you thought of approaching the counsellors at the Leukaemia Foundation? I am sure they have many patients with complex conditions such as yours. Just talking to someone impartial often helps.

It is positive that your therapy is progressing well.

I have just had a lovely visit from my son from Wales who helped me get organised so that I can base myself in the city. My project now is to get some structure into my new life and unpack!

My best wishes to you and good luck with your progress.

Helen

[cathybee1]

Had to smile when I read your hematologist is trying to keep his patients away from their results. The best our doctor can do is tell us he can't give it to us directly, he will put it in the mail, which delays it about 5 days.

Thinking about you, Chirley. I read a journal article in pubmed about a relationship between copper deficiency and celiac disease. We're going to talk that over with the family doc next week.

I'm SO SO glad you are feeling okay and you got a positive prognosis for rehab from someone. At least, you now have some options to weigh.

Hugs, Catherine

[Chirley]

Thanks for your replies Helen and Catherine.

I had a visit with my GP this morning and he acknowledged my right to refuse treatment. He also said that I was stupid (but with a smile). My ferritin level has increased another 100 in a month so I have been referred to a hepatologist to see what's going on. That appt is for the 14th March.

I went to the GP to see if I could get a clearance to return to work but unfortunately he refused and told me that he considers me to be permanently unfit for work and said that he thinks that I may be "terminal". He suggested taking my superannuation and enjoy spending some of it on a holiday. I still have 6 months paid long service leave and 1 months paid annual leave owing to me which I might take so I can leave my superannuation accumulate for a while yet. I hate thinking about financial things.

Helen, I'll send you a PM later on after I do some housework (visitors coming eeek).

Catherine, still no metabolic test results? If Bruce does have IV copper can you take note of the type of copper, what the dose is and how it's given. I wrote to the Mayo Clinic in Rochester but they wouldn't release that type of information to a layperson.

You would think that if Celiac disease interferes with iron absorption it would interfere with copper, zinc etc. I have had small bowel biopsies and I know I don't have celiac but I have had very high anti gliadin antibodies in my blood on a number of occasions. I don't know the significance of this in view of the negative biopsies. (also had very high gastrin levels).

I have my State Member of Parliament coming to my house shortly and I told him that I would have to clean the house before he came. He told me not to bother because his house was messy but I can't help myself, I'm doing a bit of a panic.

Better go.

Bye for now.

[cathybee1]

Hi, Chirley, I was feeling a little better about your doctors until reading this latest post about the conversation with your GP.

Regarding Bruce, the doctor's office said we will get the results of the metabolic tests next week. I hope that means it is good news.

Celiac is getting more press here these days. I had celiac, gliadin and food sensitivity testing last year, was told I didn't have celiac but nonetheless was told to stay away from grains and all products containing gluten for 3 months, because I was having some autoimmune responses. Bruce got the same information about his testing. But that was a year ago. I wish I knew more about at what stage autoimmune responses trigger non-absorption. One thing that was interesting in the Mayo clinic article was that the doctors said while they still don't know exactly where in the gut that copper is metabolized, they got good results from oral supplementation combined with a gluten free diet.

If Bruce ends up with IV supplementation, I definitely will let you know the protocol.

You definitely got my attention when you said someone from Parliament was visiting. That would certainly be a reason to straighten up the house.

Hugs, Catherine

[Chirley]

Hi Catherine,

Bruces' metabolic testing is taking a long time isn't it. I think mine took 2-3 weeks. When I got the anti gliadin test results, I thought I'd try the gluten free diet for a while and see what happened. I went to a dietition and followed their advice to the letter for about 4 months. I had absolutely no changes in blood counts but this was done before we knew about my copper levels so I don't know what might have been happening to them.

As for the politician visit, I rang his office to ask for some assistance for a couple of work colleagues who are being bullied. This MP is also an industrial relations lawyer as well as my local representative. Well, imagine my surprise when I rang his office and he answered the phone himself. He even remembered me from a previous meeting at a local community get together, he even knew where I lived. Anyway, he said that he'd come to my house to discuss the problem and I could show him supporting documents at the same time. I did a bit of a panic and madly vacuumed and dusted and tidied up and after all that he rang and said he couldn't make it. He is however, coming the week after next. His secretary is off sick and I think he is totally confused without her.

Why do women do the panic housework thing? I'm almost sure a man would just shrug his shoulders and say "I can't see anything wrong".

It's 9.30 am here and it's miserable and dark and rainy with some thunder and to top it off the weather bureau are predicting another cyclone to form in the next couple of days. We don't need more rain let alone another cyclone. I just hope they are wrong.

Regards

[cathybee1]

What immediately came to mind about why women clean is that our mothers did it??

Yes, getting the results from the metabolic testing is taking a long time. Last time we saw the doctor (in mid Feb) the results weren't in, he said he would phone with the results, I called last week cause we hadn't heard, and I learned he was gone until this week. Next week is our appointment, so...

I bet you thought private health care was quicker than govt provided...I have come to the conclusion that it's not, just more expensive. For some reason, all Bruce's doctors, including his hematologist, are part time.

I'm hoping you don't get another cyclone...it's dark and rainy here too.

I'm very impressed that you have a politician who answers his own phone. That's amazing.

Hugs, Catherine.

[cathybee1]

Hi, Chirley

Just got back from an appt. with the doctor. So much information my head is swimming.

Some very interesting news from the "NutraEval" -- the test on how Bruce has been metabolizing and utilizing vitamins, minerals, amino acids, etc. The report is 20 pages, so I'm writing here based on my notes from the appointment. I'm going to have to do more reading to understand some of what he told us. If the following doesn't sound right, it probably is not right.

First, from our doctor's research, copper is transported via 12 different proteins. The mechanism how this is achieved is still poorly understood.

Some very old research indicated that 10x the dosage of oral copper is required to double the serum copper level (I think I got that right).

Bruce has been taking 10 mg of copper/day. His serum copper has come up slightly, but the ceruloplasmin level has not budged.

Though his blood serum levels for folate, B12, and Zinc have been normal, the metabolic tests indicate that B12, some other B vitamins, copper, and Zinc are not being well absorbed into the blood cells. The B12 finding is very interesting as Bruce is self-injecting B12, not taking it orally.

Also the test indicated that Bruce is low in Vit C -- Bruce had discontinued the supplements when we discovered the high ferritin level.

The doctor also found that Bruce is deficient in molybdenum and glutathione which are required to metabolize iron. Dr's theory (?) is that high iron and ferritin levels are preventing transport of the copper by creating oxidative stress in the liver.

The plan is to do an "IV push" -- basically an injection once a week into a vein -- at the doctor's office consisting of glutathione, copper, zinc, B vitamins, perhaps Vit C and molybdenum.

The doctor will be using copper sulfate in this, which he says is easiest on the body, using a standard dosing which is 65 mcg/kg of body weight.

He is also going to have Bruce do some chelation with oral EDTA and DMSA.

They are ordering the "cocktail" from the other side of the country, so it will probably be a week to a week and a half until Bruce can start.

I did inquire about the possibility of celiac disease inhibiting absorption of these substances. Apparently Bruce was tested for this a year ago, before the diagnosis of myelodysplasia, and it came back negative.

[Chirley]

Hi Catherine,

Thanks for the information. I hope all those nutrients will help Bruce. I had a friend who had fatigue and hair loss. Her GP did the usual tests which all came back normal. She then went to a doctor who (being polite) was alternative (being honest, was a quack). He gave her weekly intravenous vitamin injections, put her on a dairy, caffeine, gluten and red meat free diet for 12 months and yes her hair thickened again but the tiredness remained. I don't know if the treatment helped her but she still has hair, so she's happy. I know the doctor was a quack because he has since been deregistered he was also found to be psychotic.

No wonder Bruces test took so long to come back. It sounds very thorough. I don't think we have a test like that available here. That part about high ferritin preventing the utilisation of copper is what my haematologist told me too. As your doctor and my doctor have said, the whole copper, zinc, ferritin metabolism pathway is not properly understood and that makes it difficult to devise a treatment plan.

My haematologist did mention IV Copper Sulphate but the neurologist didn't want to even discuss this.

It's interesting about the Vit C because I was advised against taking it because of the high ferritin, mine wasn't tested so I wonder if it's low too.

I haven't had a copper level done for a few weeks but if it kept to the path it was taking, it should be zero now. I have noticed in the last week or so, my skin has become that odd grey/white colour it used to be. Also the conjunctiva has become paler so I might be becoming anaemic again. Oddly enough my neuro symptoms aren't any worse and in fact the physio is impressed with the balance progress that I'm making. She tested my cerebellar function yesterday and that is still abnormal which is what she expected. I think if my balance keeps improving, I may be able to walk with just a stick in a couple of weeks time.

Catherine, it must be reassuring to know that they did find a nutritional reason for Bruces condition.

Best of luck to both of you.

Regards.

[cathybee1]

Thank you, Chirley. I am so glad your neurological problems have not gotten worse.

All of this is quite a journey.

Bruce has not been feeling so well after his last transfusion, so I am really keeping my fingers crossed that this treatment helps, and hopefully with the anemia.

He did have a trial push of the glutathione today, to make sure he tolerates it, and he said he did feel better afterward. That's a good sign.

Our doctor is an MD, formerly a biochemist, and he mentioned he had done 5 hours of research after getting the metabolic test results back. He said there's more information about copper in hepatic case studies than hematological, which was interesting. This is "alternative" in that Bruce will not be getting pharmaceuticals, so insurance doesn't cover. We will not be continuing it too long if we don't see results.

Take care, Chirley,

[Chirley]

Hi Catherine,

I'm sorry if I inferred Bruces doctor was shonky.That's not what I meant. I was only talking about my friends doctor because she persuaded me to go to see him too. I only went once and he diagnosed heaps of intolerances and allergies by looking into my eyes. Every thing he said was the same thing he said to my friend and the treatment was going to be the same as well. He wanted to charge over $250 a week (for a year) for the injection plus charge medicare for the visit as well. The vitamins were just going to be the routine ones of Bs and C. I never went back.

I don't know anything about glutathione. I'll go and look it up now. I reread my earlier post and it sounded judgemental and I didn't mean it to. Sorry.

Regards

[Marlene]

Hi Catherine,

Please do your research on the chelation therapy before moving forward. At one point we went to a "functional medicine" doctor to get a more comprehensive view of hormonal and vitamin levels. He too wanted to do chelation but it was the IV method. At this time, John was on Exjade and still dealing with high FE so we were not planning on doing chelation. After researching it and talking to some his patients, there's always a segment of people who end up feeling worse from the chelation, especially the DMSA. DMSA can create new issues for you like food allergies to any food with sulphur like garlic and onions. Especially if your health is already compromised, chelation will can be harder on you. Just like with treatments for AA/MDS, no one can predict what your reaction will be. Oral is probably safer. Here's a site on adverse effects of DMPS, which is another sulphur based chelator.

http://www.dmpsbackfire.com/dmsa/default.shtml

Chelation releases a lot of heavy metals which is very taxing on the detox organs. If your body cannot handle that, the toxins will take up residence else where in the body. Unfortunately, they cannot identify the organs that are compromised by the heavy metals and target the chelation to them. IMO, detoxing a small amount in the compromised organs/tissues would be so much more powerful than a shotgun approach.

I personally feel that less is more. There are less aggressive ways to detox.
Getting the liver glutathione levels up will go along way in improving your body's detox capability.

Which leads me to glutathione. Glutathione supplementation is not very effective in increasing tissue levels of glutathione. There are other nutrients, like NAC, Lipoic Acid, milk thistle, that will improve your body's production of glutathione. And vitamin C is critical.

On the B12....Bruce may not be converting the type of B12 he's injection into a useable form. The methyl form of B12 is bio-available, the Cyno form is not.

I don't mean to discourage you regarding chelation. Many have been helped by it. Just put a critical eye on it.

BTW...after spending lots of $$$$ on tests, we walked away and self treated. This guy was just too aggressive and cavalier for our taste.

[cathybee1]

Thank you so much, Chirley and Marlene.

Chirley I did not take your post as judgmental. Rather cautionary.

Marlene, I took your post the same way.

I appreciate both of your comments. I have not done enough research of my own yet, and this gives me some good direction.

IV chelation is not in the cards. The plan is for only the glutathione, B vitamins, and copper to be administered intra-venously.

The doctor started yesterday with a trial dose of glutathione. For whatever reason, Bruce was actually feeling better today than he has in a while, and could walk uphill (the only way we can take a walk around here) without distress.

The chelation is going to be via supplements. The one the doctor has suggested is Xymogen Chelex, which contains DMSA and EDTA, NAC and Lipoic Acid. And it will not be daily. The doctor has actually provided a schedule for the dosing of the chelation of 4 days on/11 days off. I'm hoping that will be adequate to give Bruce's body a break.

The doctor told us yesterday that he is basing much of this plan on hepatic clinical trials, because there is very little on copper deficiency in hematological research. And since Bruce's liver issues predated his hematological issues, it seemed like a reasonable approach.

I really do appreciate the heads up about chelation and DMSA. And Marlene, the information about the B-12 is a revelation. I have a lot of reading to do.

Regards

[Chirley]

Hi,

Well I went to the cancer centre for a port flush today. I was about to leave when a nurse came and handed me an appointment time for Monday. I didn't know anything about this and neither did she, she just said I was booked to come in 5 days a week for the next 3 weeks for "treatment".

After then having to see my haematologist it turns out that he has accessed some IV Copper Chloride which he wants me to have for the next 3 weeks and then maybe once a week after that. He said I could be admitted into hospital for 3 weeks to have this or have it in the day care. I'm not sure I even want it. I went to the pharmacy to find out how long it takes to have the infusion, what the side effects might be and how much it costs. Guess what, they didn't have answers to any of my questions. They did say that they would prefer it if I was an inpatient for at least the first week of treatment. I'm supposed to get a phone call from them today with the information I wanted.

I still feel well and I have progressed neurologically and I no longer have to use my walker. It's so good to be back to the walking stick. The doctor said that I'm not physically improving but the neuro rehab is helping me adapt to my new normal.

I had a blood test for the first time in a month and I didn't get numbers the doctor just said that my Hb is good but my neutrophils and platelets have "crashed". My ferritin has fallen 3,000 in 4 weeks BUT he said this isn't an accurate reading because copper deficiency masks iron overload and that he wants me to start chelation next week. He said maybe Exjade or IV chelation (I assumed he meant Desferal-does that sound right?) He said that when I start copper replenishment the ferritin level will increase a lot.

I'm not sure about any of this, I'll have to think about it and make a decision by tomorrow.

I know ignoring it is just burying your head in the sand but I would've liked to have had a bit more time "off".

Regards

[cathybee1]

Wow, Chirley, this is a lot to digest.

It's wonderful that your doctors are trying to take such good care of you (even though the timing isn't right). And that IV copper is a possibility offered, rather than more of the awful self-injections.

Re not getting answers to your questions about the copper, we're experiencing a little of that too: Bruce was supposed to start the IV copper yesterday (it's set up in the doctor's office) but it got delayed a week because the doctor wasn't going to be in the office until next week.
We were told nothing untoward was anticipated, but the doctor wants to be there "in case."


I know you would still like to be on holiday from all this. Do you know where your copper level is now? Is there a possibility the neurological problems will worsen if the copper deficiency isn't addressed?

Not trying to butt in here -- okay, a little. I really do respect your wish to give this all a rest. But my mother's voice was sounding in my ear as I read your post -- about not missing opportunities.

Wish we lived closer or at least in similar time zones, sorry I haven't been able to respond before now.

Whatever your decision, here's a huge hug, Catherine

[Chirley]

Thanks for the hug Catherine.

My copper level hadn't come back yesterday. If it was 2 last time I had it done and it dropped anywhere between 1 to 4 each week, then it's probably pretty low about now.

As an update, I didn't get a phone call from the pharmacy so I rang them and they said that I can't start the copper on Monday because they couldn't find any copper chloride in Australia. They said they could get copper sulphate but that isn't what the doctor wants. They said they were going to order it in from the US but I told them not to bother. I said I didn't want them ordering anything until I'm told about the side effects, how it's infused and how much it costs. I know I won't hear anything.

I tried to ring my doctor and it was the first time I've tried to do that outside his office hours. I couldn't contact him and that in itself, annoyed me. He should be contactible at all times. So I rang the day care and the nurse manager told me that my appointment had been cancelled, so why didn't they contact me?

Oh well I'm the same as I was yesterday morning, nothing has changed. Ecept I did get a phone call from the hepatologist who told me that the tests he ordered showed that I do have liver disease (mildly) from the excess ferritin. He said that he had been talking to my neurologist who said that the consequences will be "dire" if I don't have copper replacment. Nothing I haven't been told already.

It's a little worrying to have my pharmacy say that I should be in hospital for the first week of copper but that Bruces doctor is going to give the copper in his rooms. Has this doctor done this before? The literature my doctor gave me about the copper chloride didn't say much but one of the things it did mention was that it WASN'T to be given as an IV injection. Only give it diluted as an infusion. It didn''t say how long it had to be run over but the pharmacy indicated to me that it was a few hours.

The doctor printed the information off the HOSPIRA website who are the suppliers of the copper. I don't want to worry you but it's best to be informed.

I wish you and Bruce the best of luck with it all.

Hugs back.

[cathybee1]

Oohh, Chirley, so sorry about what you have been going through, seems like the right hand doesn't know what the left hand is doing but it sounds like once more the universe has come through and slowed down this process for you to a more reasonable pace.

The doctor said at the outset that he had included copper (don't know what type) in some "Myer's cocktail" formulations given previously to 2 patients in the office. That is what he is proposing to do for Bruce. The "cocktail" he is prescribing will include some copper sulfate, so it sounds like it is different kind of treatment than being discussed with you. The "push" that will be used is more like a very slow injection, given with a syringe intravenously. it is timed, and takes about 10 minutes. Bruce was told yesterday that the glutathione will be administered separately and that the glutathione will be given first, then the Myer's cocktail. He had his second gluathione injection yesterday and is feeling pretty good today.

Copper chloride hadn't even been on my radar before reading your post. I did a quick search to see what the differences between chloride and sulfate were. What I learned about copper chloride and copper sulfate were from this website http://www.drugs.com/pro/copper.html. http://www.drugs.com/mmx/cupric-sulfate.html. They are both used as a component of parenteral nutrition. Unfortunately, the diagnostic criteria that lead to favoring one over the other isn't very clear. There were warnings about using copper chloride intravenously, if undiluted. And enough other warnings that I could understand why they would want you to be in hospital "just in case."

I'm going to check that website you mentioned and also go back into pubmed and see if I can find anything else about copper protocols. I hit a dead end very quickly before. If I find anything worthwhile I'll let you know.

Going to wrap it up for now. It was a very early day, snow on the 2 passes we have to cross to get to the doctor, etc. Bruce had a consultation with the cardiologist -- he has been having some chest tightness and pain with exertion. Cardiologist said it sounded like classic angina and prescribed a beta blocker. This is a new prescription and may very well delay the onset of the copper treatment.

Another hug because you had such a rotten day. I still find it hard to believe that a hospital stay would be cancelled on you, without letting you know, and the doctor wouldn't hang around to talk about it.

[Chirley]

Hi Catherine,

It sounds so exciting to have to think about snow falls. That seems so exotic to me.

I thought there might have been some difference in the administration between sulphate and chloride but when I went on sick leave my employer stopped my external access to Clinician Net and I can only get some abstracts now. I used to be able to access MIMs but alas that's gone too.

I rang my doctor today and he was surprised, to say the least, because no one had told him they hadn't got the copper or had cancelled my appointment. He said he would "deal with it" and call me back when things were organised again. In the meantime I'm to start the oral copper again in the hope I can absorb some of it. My copper level has dropped to 0.4 and he said that it's critically low.

I'm a little concerned about my neutrophils because a friend and I are going on a pacific island cruise in September/October and cruise ships are an ideal breeding ground for bugs. Last year my doctor wouldn't let me go because of my neutropenia so I hope I'll be okay this year. Oh, he said my neuts were 0.5, better than they were this time last year but not as good as being in the normal range a month ago.

It looks as if I'm at least going to get another week of peace so i'll make the most of it.

Regards

[cathybee1]

Hi, Chirley.
I'm very glad you got to talk to the doctor. And that you get another week of peace!

Your cruise sounds like a great thing to look forward to. We are scheduled for a trip to Hawaii in May for our 25th anniversary. On days like today thinking about the tropics keeps us going. We're also hoping Bruce's immune system will be a bit more robust than it is right now, as 5 hours each way in an airplane cabin is a crapshoot for sure.

Our snow is not very exotic right now, it's snowing hard, we are supposed to get over a foot of it here, and already have lost our power twice.

So, now that power is working, I went back to the Pubmed website. Haven't found much more than I did before when I was researching the link between anemia/neutropenia/copper deficiency. Haven't found anything so far about when to use copper sulfate vs chloride. But I did come across this article and am linking it because it appears to address many of the symptoms you have experienced.

http://www.mayoclinicproceedings.com...1/10/1371.long

I was struck by this:

No studies have addressed the most appropriate dose, duration, route, and form of copper supplementation. Little information is available on human copper stores. Serum copper may be inadequate for assessing total body copper stores, and activity of copper enzymes, such as erythrocyte superoxide dismutase and platelet or leukocyte cytochrome-c oxidase, may be a better indicator of metabolically active copper stores.

[Chirley]

Hi, just a quick update.

I received a phone call late today (Friday pm) from my haematologists secretary to let me know I have been booked in for daily IV Copper Sulfate infusions for the next three weeks. These are to start Monday morning. I haven't been told much about them, just that it will take a couple of hours a day and that I will need to come back once a week after the initial few weeks are over.

Although I'm happy to be receiving treatment, there is also a part of me that just doesn't want any more treatment. I'm a bit confused at my feelings.

Then there's the physical problem of getting to the treatment centre. It's over 60 kms each way and it's all heavy, heavy traffic. I can't drive any more and all my friends work (not that I'd ask them anyway) My Dad is 84 and although he still drives, he isn't comfortable driving outside the local area or in heavy traffic. The doctor has requested that I'm transported by ambulance and they have agreed to collect me every day at 8am and return home whenever they are available. Here we pay a levy on our electricity account and ambulance service is free, but I still feel a bit guilty about having to use their services for something as basic as getting to appointments.

Regards

[cathybee1]

More snow here, in fact, it is bad enough over a big area that it stopped us from going to an appt with Bruce's hematologist today.

Interesting that now copper sulfate is now going to be the treatment. Was there any word why the switch? And also good news that it can be done outpatient. However, the logistics sound horrible!

It seems from your post that the daily trips would be only for a couple of weeks. And it's clear your doctor cares about you a lot to arrange the transportation.

You are a true Ozzie to be worrying more about others more than yourself. But there aren't so many times in a lifetime when the stars align so perfectly for us as they seem to be aligned for you now. The treatment is available, the transportation is arranged, the commitment of time is relatively short.

Bruce had his first infusion Wednesday. We are expecting it will take at least a couple of week before we will know if it's helping. In the meantime, he is feeling well. Had no problems at all. His quote: "I'm not ready to leap tall buildings yet, but I feel just fine."

Keep your fingers crossed for us, I will do the same for you.

Hugs, Catherine

[Chirley]

Thanks for the answer Catherine,

I'm pleased to hear Bruces first treatment went well. This whole process is a learning experience isn't it. My haematologist is still amazed that when my copper goes up my ferritin climbs really high but when my copper drops the ferritin level drops really fast as well. This isn't real of course, the reality is that low copper levels disguise high ferritin levels, so that when copper is replaced the true ferritin level can be seen. So, how many people out there are being told they have low iron stores when in actuality they have low copper?

Does this happen with other minerals, micronutrients etc? Gives you something to think about doesn't it.

My doc is getting the copper sulfate simply because it is the only copper salt available here. There were logistical and financial considerations in trying to get the copper chloride from the US. I was considering flying over myself and bringing it back, it seemed as if that would have been the easiest way to do it. I checked out the airfares and I could have made the round trip for around $1500 including taxes just needed to add in living costs and the price of the copper. I didn't realise it was so cheap to get to the US. I was going to fly into Chicago and domestic flight to Rochester. My problem was the low neuts and my doctor not keen on me going on a plane. Anyway problem solved.

Is it late in the year for snow? I know where I live we are coming into the nicest 2 to 3 months of the year. I love April/May/June. The temperature dips to 12 or so at night and stays around 22 to 24 during the day. Magnificent. In July August the night temp can dip as low as 3-4 degrees and the day temp is around 18-20. Still good for winter and some people come to Queensland to escape the winter further south.

I woke up thinking about it differently today and the glass is more than half full. Hope things continue to go well for Bruce.

Regards