Watch and wait ends, Vidaza begins.

[cathybee1]

Hi Chirley (and Greg) -- hope it's okay I'm doing a two-fer...

Chirley, I'm so so glad you're feeling better. That dehydration is awesomely serious stuff.

No news here. Last week, the hematologist discontinued the Aranesp for Bruce. And then made a pitch for Exjade. Because now Bruce is only gonna be on transfusions until we see if the copper kicks in (still waiting for results on that). After your experience, as well as watching a video on the AA/MDS site, Bruce is gonna wait.

We don't celebrate Easter or Passover either, but like you, Chirley enjoy watching others do it. And Greg -- celebrated both holidays when I was young with various parts of my family, but tonight we did nothing more festive than eat homemade mushroom soup.

It was a spectacular spring day here, howling cold wind one morning, then the wind stopped and it warmed up a lot!

Good to hear from you, Greg, do you know how your copper is doing? Your comments about Queens reminded me of some nice memories -- I had a hotel in Queens I used to stay in when traveling to Europe. I always spent a couple extra days there, get my clock reset a bit, would do some uptown touristy stuff, but always spent eating time right down the street from the hotel. Like you say, very good grub there!

Cheers, Catherine

[cathybee1]

We finally got Bruce's copper results on Friday. Here they are (from bloodwork 4/13!!):

Copper .74 (.75-1.45)
Zinc .59 (.66-1.10)
ceruloplasmin 14.4 (15.0-30) (this is WAY up)
Reticulocyte 3.0 (.5 - 1.5) (this is way up too)
Iron 194 (45-182) (this is down)
Ferritin 762 (23-336) (this is down)

Vid D 25 OH was also low, which was surprising. So the doctor is going to increase the dose of Vit D in the Myers Cocktail.

Bruce is feeling very well, we haven't had a CBC in a few weeks, so he doesn't know if his RBC has come up or not.

Cheers, Catherine

[Chirley]

Hi Catherine, it's good to hear Bruce is feeling well and the blood results are improving. It's different to mine in that when my copper level increases so does my ferritin and iron. I wonder why Bruce and I have different responses.

I saw my neurologist last Thursday, all my reflexes are the same as they were last examination with no improvement, I tried to persuade him that I did have a Plantar reflex but he couldn't be talked into it. I feel a lot steadier with more balance but apparently I'm just getting used to my new normal. I haven't had a blood test since I was in hospital so the neuro ordered one and made me have it at the office next to his surgery. He knew about my walkout from hospital, he called it "my hissyfit" and I think he suspected I wouldn't have the blood test unless I did it then and there. Anyway I should get results tomorrow.

I hope you're enjoying Spring as much as I'm enjoying Autumn.

Regards

Chirley

[cathybee1]

Hi, Chirley -- Bruce hadn't had a ferritin level in a few months and every iron and ferritin test done in the past 6 months has been through a different lab. Plus he had a blood transfusion since this test was done on 4/13, so his numbers should be higher. I don't know what to think about it, if this represents a trend or not. Till we find out what his blood counts are doing, it's hard to figure out what's going on

I hope your results are good from your blood test. I have kind of lost track now -- are you on an outpatient schedule yet for the copper treatment, or are you still waiting for that?

I wouldn't call what you went through in hospital a hissy fit -- with what you were going through at the time dealing with the side effects of the Exjade, it seemed reasonable to say enough is enough, there are limits.

Bruce is still feeling well. He actually did some clearing work on a little trail from our house yesterday, and then took a walk after that. That was unthinkable just 2 months ago. I hope your neuro tests are better next visit -- but how you are feeling is such a big part of it.

Hugs, Catherine

[Chirley]

Hi,

I just got my blood test results.

Good news. CBC normal except for low lymphocytes.

Now for the rest. Copper at 9 (13-25) ceruloplasmin 0.16 (0.2-0.45) Ferritin 3,000 (30-150) and liver enzymes higher than they have ever been.

I've worked out that my copper drops by around 2 a week. It would have been 3 weeks after the IV Copper when I had this blood test, so, if I add 6 to the current copper level of 9 (it was 0 when I started the copper) then 1 week of IV Copper gave me an increase of 15 umols. Going on these calculations, I would only need 2 days of IV Copper per month (I'd prefer 1 day a fortnight) and not the 5 days that my haematologist was suggesting. Maybe I could have venesections to lower the ferritin at the same time. Now I just have to persuade my doctor.

I'm trying to get hand controls for my car so I can be independant again. It's not that easy. I have to be referred to an OT at a hospital that has a Driving Assessments Unit (6 months wait) and see if I'm eligible. Even if I'm accepted onto the training program I then have to have my car modified at my own cost. Apparently there is no financial assistance available for this. Oh well, what else is money for?

Regards

[Marlene]

Wow....that's great. If you can keep the HGB up with the copper, then by all means, a venesection(phlebotomy) should be doable to get the excess iron out.

John's doctor approved him getting therapeutic phlebotomies as long as his HGB was at 10 or above. He only gets 250 ml removed each time though because a full one is too taxing on him. If your HGB remains stable over the next couple of months, then they should approve it.

[Chirley]

Hi Marlene,

The haematologist and I originally decided to do venesections instead of Exjade but a doctor specialising in iron overload said that it would deplete my copper as well and recommended the Exjade instead as it's supposed to be copper sparing. Hence my couple of weeks of gastro misery. Maybe I can start Exjade again but at a lower dose but I'd rather not. I really don't want to risk that ? pancreatitis/abdo pain and dehydration I had before.

Regards

PS I just got my first injury from my neuro problem. Because I don't always know where my feet are, I walked into the leg of a lounge chair and I've broken a toe. Unfortunately I still feel pain, it just takes longer for the impulse to reach my brain so it was a good 20 to 30 seconds after the injury that I felt it, by then it's too late to minimise the damage.

[cathybee1]

Hi Chirley,

That's great news about your Hgb. Yay (doing high 5's). And to get down to a couple of days/month for the copper is awesome news.

So sorry about your toe! There's nothing good about that. I've done that too and it hurts.

Bruce is still feeling well enough that we're very positive about our trip to Hawaii next week. I'm sending good energy your way for you to get all the meds balanced soon so you can enjoy your trip too.

Hugs, Catherine

[Chirley]

Hi Catherine,

I saw my haematologist this morning and he insists I have to have 3 weeks of daily IV Copper before I go to a maintainance dose.

I start outpatient treatment on Monday at Chermside Cancer Clinic which is about 75 kilometres each way and because I don't drive I have to go by Ambulance and they have a reputation for picking you up 2 hours early and collecting you for return 2 hours late. All in all I'm expecting long days.

I'm not being restarted on a lower dose of Exjade. Lowering the ferritin is once again on the backburner.

My doctor looked at my toe and said that it was indeed broken and I need to strap it to the next one, I'm sure I'll get ariound to that before I see him again on Monday.

The haematologist also told me that he asked the hospital what they had done to annoy me enough to make me walk out because he considers me a very placid person. They didn't know ......!!! You just have to wonder sometimes.

Regards

[Neil Cuadra]

Originally Posted by cme01

The haematologist also told me that he asked the hospital what they had done to annoy me enough to make me walk out because he considers me a very placid person. They didn't know ......!!! You just have to wonder sometimes.

They should read Marrowforums and get the real facts about their hospital!

[Marlene]

Catherine.....Have fun on your vacation.

Chirley,

I can understand putting off the iron until you can get to a maintenance dose of copper. A lower dose would be better. John started with 250 mg and worked up to 750 mg. He never got beyond that due to side effects. Even then, he would take a break from it after about two weeks of being on it. How about desferral? That may be easier on your system.

Regarding balance and neuro issues.....you really do have to be careful. In the beginning, John's was so bad that I was ready to wrap him in bubble wrap from head to toe. One time he tripped on a speed bump and landed belly down on the ground. Broke his wrist and severely bruised his chin. He had no platelets at the time. The second time he lost his balance and fell, he ruptured his quad tendon. He's much better now. We've done so much to improve the PN with body work and nutrition to heal the nerves. After one visit with his Chiro, his gait changed back to normal walk. And then he worked with John on his balance. Recover can be long road.

Take care....M

[Chirley]

Hello,

My IV Copper in Day Care was supposed to start yesterday but I couldn't get transport so it started today instead.

My doctor had been to a doctors' conference where my case was discussed. The other doctors weren't happy about giving me IV Copper but did in the end agree to it. As a compromise my doctor has agreed to reduce the dose to 2mgs/day in 250mls of Normal Saline over 2 hours.

I'll be having daily treatment for 3 weeks and then once a week on an ongoing basis.

The idea is to keep my copper level within normal limits at all times to try to improve my neurological problems. The bone marrow has high cell turnover so it responds very quickly to copper replacement and can cope with fluctuating copper levels but the spinal cord is a much slower long term process and requires copper stability.

Hope it all goes well.

Regards

[cathybee1]

Hi Chirley...

Hmm, I'll be interested to see if the new dosage is sufficient for you. They're still fiddling with Bruce's dose too. Actually increased it a smidge yesterday. But there's such a delay with getting the bloodwork back, it takes weeks for us to get feedback.

We did get a Retic back from Friday's bloodwork, and indicated they were back into low normal range again. Again...a different lab than the last test, actually using different reference numbers...aarghh. Why can't these labs agree on what's normal?

We're leaving tomorrow for our flight to Hawaii, Bruce's wbc are up high enough to feel comfortable doing that, he's still feeling quite well, so I'm planning on having a real vacation.

I'll only be able to do internet infrequently -- I'll catch up when we get back.

Hugs, Catherine

[Chirley]

Hello,

I've just completed my 2nd week of IV Copper.

For some reason I developed severe Hives on Monday of the 2nd week when I was about half an hour into the infusion. It required 2 doses of IV Phenergan and IV Hydrocortisone to ease the redness and itch a little. I still have some rash left although I'm getting 200mgs of IV Hydrocortisone a day. It seems a little early to blame the steroids so I don't know what's causing it, but I have been getting swelling of the feet and face for the last few days as well. All in all I'm just not feeling right but can't put my finger on it. BP has been down to 80/40 and pulse down to 47 but the nurses don't seem concerned.

Disappointingly, my copper level isn't rising very fast either. I just got the results of the copper level I had done on Monday after 1 week of IV copper. The original copper level was 4.4 and has only increased to 7.5 (13-25), I think I may require more than 3 weeks of daily copper to get the level into the high normal range which my doctor wants. This is a very tiring process and requires a minimum of 5 hours commuting every day, quite often it's 6 or so hours and then the 3 hours or so in day care as well. They are long tiring days. The day before yesterday, the ambulance broke down on the way home. The driver was making an illegal ("I'm an emergency vehicle and can do what I want") U turn when we lost steering and brakes. The ambulance had to be towed and they sent another ambulance car (not a van) from another town about 200kms away to pick me up and take me home. Now THAT was a long day. The ambulance officers have been incredibly nice and caring so that makes it a bit better.

Oh well, I'll see what next Mondays test will show and see where we go from there.

Regards

[cathybee1]

Oh Chirley, I hope you're doing better this week that when you posted, wish you could have this done someplace closer to home!

We just got back from our beach trip yesterday. It was good for both of us to get away. We both needed a break.

Bruce had another copper test done yesterday, it will be 2 weeks before we get the results. And it's been almost 3 weeks since the last copper IV push. But we learned his hgb is staying steady (not normal but not awful at 9.0), and the reticulocyte numbers were up a bit. So we're hoping that his marrow is finally starting to do its thing.

I really hope this week is going better for you

Hugs, Catherine

[Chirley]

Hello Catherine,

I'm pleased you enjoyed your holiday. I've never been to Hawaii but one of my Swedish cousins holidays there a lot and she and her husband enjoy it immensely. I'm looking forward to my cruise around the Great Barrier Reef later in the year.

It's 4 in the am and I've not been asleep yet because I have tingling and vibrations in my left arm. I've developed a little weakness in my left hand over the last couple of months according to the neurologist and I think it's started progressing a bit in the last week or two.

I will be seeing my haematologist today for results of last Mondays copper test but I'm not optimistic. He told me on Tuesday that the ceruloplasmin level had increased from 0.13 to 0.14 after 2 weeks of IV copper and that the increase was very disappointing. I have to have another 24 hr urinary copper excretion test because he thinks that the more copper I get, the more I excrete. I'm also going to be referred back to the Prof of Metabolic Medicine that I saw last year. It looks like maintaining a normal copper level is goingto require intensive, time consuming and ongoing treatment.

I know that I sound down and dismal but I'm just completing 3 weeks of daily hospital visits with daily IV antihistamines and IV steroids along with the IV copper each day is at least 8 to 10 hours including treatment and commuting. My CBC is looking good (just lingering lymphopenia) but it's a big price to pay. It's easier to just have a transfusion every week or two and take the risk that goes with neutropenia especially that I'mnot improving neurologically.

I would love to be able to have some time at home at the moment because my little 12 year old dog became lame on Monday and can no longer walk. She was fine Monday morning and I came home Monday afternoon to find her unable to walk. My father took her to the vet for me on Tuesday but the cause wasn't found. She was given an arthritis needle and some tablets in the hope that she had a temporary injury but she hasn't improved. I'm taking her out to toilet her every 2 hours while I'm home and I'm very lucky because my parents are caring for her during the day. She's in no pain and still likes her foodbut I fear thelast 8 years of her life with Addisons Disease and steroid treatment is catching up with her. I'm a little suspicious that she's bunging it on a bit for the attention. At least, that's what I'm hoping.

The alarm clock has just gone off. Better get ready for the day.

Regards

BTW was the volcano spectacular?

[Chirley]

Update.

It's Friday afternoon here and I'm home nice and early for a change. I just finished my scheduled three weeks of daily visits for copper.

This morning my haematologist told me my latest copper level was 4 point something !!! What is that about? It was 7.5 last week, I told him that it was a mistake but he insisted it was right. So, next week I have MORE daily visits with double the dose of copper.

He and I both agree that it's not looking good. Certain things were left unsaid.

Update with my dog Tina, In Status Quo.

Regards

[Birgitta-A]

Hi Chirley,
Too bad that the copper level still is very low in spite of treatment!

You know I don't think dogs can act lame just to get attention. What kind of dog do you have? Dachshounds can have a special kind of lameness due to their long back. I have seen dogs with their backlegs on a little wagon while they wait for the lameness to disappear.
Kind regards
Birgtta-A

[Chirley]

My Tina girl. Part Mini Foxie, all heart.

[Birgitta-A]

Hi Cirley,
Tina looks very sweet. Good that she is a small dog - I have understood that small dogs live much longer than big dogs. Hope she is getting better!
Kind regards
Birgitta-A

[cathybee1]

Hi Chirley:

Oh, I had hoped for better news! It seemed like copper would be such an easy fix at first. They did decrease the infused daily copper level recently, didn't they? To 2 mg/day? This has been so grueling for you, I really appreciate your posts, just wanted to let you know that. That is such an awful commute and schedule. I am sending positive energy your way, wish I could do more.

Your Tina is beautiful. I am sorry she is hurting! We love our dogs. Forgive this unsolicited dog advice, but since we're talking about our babies, I feel free to offer it -- our last 2 dogs developed arthritic pain and limping, and we dosed them with a product called Glycoflex at our vet's recommendation -- the primary ingredient is Green Lipped Mussel . I ordered these online from a veterinary supply company. The improvement in the dogs was dramatic. We've been peddling this stuff ever since, though we don't make a penny from doing so.

And we missed the volcano! We were on Kauai, no volcanoes there; we got rain, but I spent a lot of time snorkeling, so the weather didn't matter. I would love to go to the Great Barrier Reef some day.

Hugs, Catherine

[Chirley]

Hi,

The Mayo Clinic in New York recommended an IV Copper dose of between 2 to 4 mgs/day for 3 weeks. When I was in hospital for a week I had 4mgs/day but the other doctors in the practice my doctor belongs to weren't in favour of giving me any copper at all, so as a compromise, my doctor reduced the dose to 2 mgs/day as an outpatient. This dose hasn't been effective so I'm having a further week of IV Copper (week No 4) with an increased dose of 4mgs/day. Ongoing treatment will depend on my response to this increased dose. The response is measured by the Copper and Ceruloplasmin levels rather than CBC results because the CBC fairly much normalises with Copper levels of less than half normal parameters.

My doctor feels that for neurological stasis/improvement, it's important to have sustained Copper levels well within the normal limits.

There has been some good news with Tina. She has started walking a few steps by using both her hind legs together, kind of like a bunny hop. She's not in pain and she's still happy so I'll keep on hoping for progress. I started giving my dogs glucosamine last year but my other dog, Gidget, developed a GI bleed and ended up in hospital for a week. There was no connection established between the glucosamine and the bleeding but I stopped giving it anyway. Now I give them Sharks Cartilage but I will definitely get some Green Lipped Mussel. Thanks for the tip.

Regards

[Birgitta-A]

Hi Chirley and Catherine,
Here is an abstract from the European Hematology Association Conference about copper: http://www.eventure-online.com/event...ongressId=4634
Kind regards
Birgitta-A

[Chirley]

Thanks for the link Birgitta.

My doctor has given me similar material. On all the literature I've read it only makes reference to low risk MDS which still leaves me with the question as to why I developed Intermediate Risk MDS with increased blasts. I haven't seen any reference to increased blasts with copper deficiency in any of the articles I've been able to access. My blast count returned to 4% after 5 cycles of Vidaza and copper replacement so it's hard to know which treatment worked. Do I have MDS which responded to Vidaza or do I have Copper deficiency induced bone marrow failure or is it a combination of the two?

I asked my doctor that question and I didn't get a definitive answer, just some mumblings about how all very new this is and how no one knows much about it. He's been in contact with the Mayo Clinic so I know he's done his homework. He told me yesterday that he now includes copper and zinc tests on all new patients presenting with cytopenias. At least my experience has achieved some good for other people.

Regards

[Birgitta-A]

Hi Chirley,
Yes, actually all hematologists should include copper and zinc tests - as Marlene has written during many years - because copper difiency gives symptoms that are so similar to MDS.
Kind regards
Birgitta-A