Watch and wait ends, Vidaza begins.

[cathybee1]

I read your letter to Bruce today. We are both claiming you as our friend now, so it is good to know today is a better day for you.

We sometimes get snow here at our location and elevation, all the way into June. This year has been unusual that we've had so much of it for so long this late. We normally have 4 distinct seasons, and once we're done with winter, we usually go into dry weather. We live in a very large state, and like you describe, the weather varies a lot from one end to the other.

I was surprised to hear how cold it can get there in the winter. But your fall does indeed sound glorious.

This journey has sure opened my eyes to the fact that doctors still have a long way to go to understanding what goes on in the body. Discoveries are made by accident. And doctors all have their own system of beliefs about what works and what doesn't. From what we've learned, one of those belief systems that needs to be changed is that copper deficiencies don't happen in developed countries. I think all of us, doctors and patients alike, have to be a bit open and curious to try and listen to what our bodies are trying to tell us.

Thanks again for the information about what can happen to the ferritin as the copper goes up. Ferritin is such an imperfect measure of iron. One of the consulting doctors suggested Bruce get a liver biopsy to see what was really going on, but as there didn't seem to be any real treatment choices after that other than to keep monitoring, Bruce decided to hold off.

Hugs, Catherine

[Chirley]

Hi,

Yet another update. I was waiting for the ambulance to collect me this am when the phone rang. It was day care cancelling my visits because they had been advised that the copper infusions can only be given in hospital.

My doctors secretary is trying to find an empty bed in my usual treating hospital but 3 weeks at short notice is a big ask. I'm happy if they take a few days to find a bed because of the practical aspects of such a long admission. You know, filling the cupboards with dog and cat food, buying one or two pairs of new pyjamas and something comfortable to wear in hospital during the day. (I dislike staying in PJs in the day time). I did buy a new book to read in daycare but might need to get a couple more and hospital book/gift shops charge too much.

I'll update again when something happens.

Regards

[cathybee1]

Hi, Chirley. I must say, your folks there are consistently last minute when it comes to messing with your head. But, as you say, it will give you a chance to plan your reading better.

Bruce went for bloodwork today. Had his first copper infusion a week ago, had CBC's this a.m., his red blood count went down almost a point to 9.3, but his platelets are up (he has been slightly low to low normal). No one had an opinion about that. His hematologist told him today that he can be on Aranesp another 3 weeks or so, it's doesn't seem to be helping. Bruce's last transfusion was the end of Feb and the numbers have been steadily dropping since then. The hematologist has wanted to start him on Vidaza for the past 6 months, but Bruce told him today he isn't ready to consider that.

Had another copper infusion today. We are still working at keeping the faith, this is definitely a patience game.

Hugs, C.

[Chirley]

Hi,

Ive been admitted to hospital for the next three weeks for copper infusions. I'm about an hour into my first infusion with no side effects. I'm having 5 mgs copper sulfate in 500 mls of normal saline run over 4 hours. This will be daily Monday to Friday with hopefully weekend pass each week.

My counts this am were Hb 72, WCC 0.6, Neuts 0.1, platelets 120. I think I saw a high eosinophil count (that would be a first).

I'll be having 2 units of blood following the copper.

This morning I have also been started on Exjade and fish oil capsules and my B6 and Folic Acid have been recommenced and I had an IM injection of B12. My haematologist says he is going to overload me with everything while I'm in here. He also said he recently had another patient who developed spinal cord problems from chemo and he started her on fish oil capsules and it really helped her. He said he was going "hippy" and giving supplements to augment conservative therapies.

Interestingly he said he had a baby patient with abnormal chromosomes and after treating the baby with B12 injections the chromosomal abnormality disappeared to the delight of the treating team and the parents.

My room mate is a 70 yo lady who had MDS and now has AML. She has just finished her 2nd lot of chemo and her counts are coming back but she has intermittant fevers, they think she has a fungal lung infection but are reluctant to do a lung biopsy. She was talking to me last night about having another 5 years to live?? Does this sound a bit opimistic? or is that the normal prognosis for AML?

[Chirley]

Apologies for sending my unsigned post, a nurse came in to give me my very first Exjade. YUM. 1G(2 tabs) not too bad just a bit chalky.

Regards

[cathybee1]

Hi, Chirley.

I'm so glad you are doing okay with the copper so far. I hope the Exjade helps. Sounds like a similar regime to Bruce's but more high tech.

We had some excitement this past week. Bruce has had some pain and tiredness on exertion, all along the Hematologist has told him it was his heart not getting enough oxygen rich blood. Things progressed last week to the point that he was waking up in the night with pain in his chest, he was scheduled for an emergency angiogram. There was indeed a blockage in one of his coronary arteries and he received a stent. He came home 2 days later feeling much better than when he went in. Goes in tomorrow (Monday am) to the Hematologist and pm for his copper push.

Sending a hug and good thoughts to all of us for good results from the copper (etc) treatments. Did you find some good books to read? Bruce ended up doing very little reading when he had his brief stay in hospital, but they were checking on him every 1/2 hour day and night.

[Chirley]

I feel great this morning and slept for 14 hours straight (apart from having obs taken and bouts of diarrhoea). My doctor tells me this morning that he's hoping it's the Exjade causing the diarrhoea and not the copper because I should develop some tolerance to the Exjade over time.

I noticed the price on the Exjade box this morning. WOW. $5652.24 for a box of 28 which will last 2 weeks. Glad I only have to pay $33 towards it. Luckily because I'm having my copper in hospital I don't have to pay for any of it.

The nurse took my blood test at 5 this am and it's now after 8.30 but my CBC hasn't come back, my biochemistry was available and it's fine, just the liver enzymes up as usual.

Just 20 more days to go.

Catherine, sorry to hear Bruce hasn't been well but at least now with the stent in he should feel a lot better. One of my uncles had a CA stent put in about 6-7 years ago and he has been realy well ever since. Give him my best wishes.

Regards

[riccd2001]

Originally Posted by cme01

I noticed the price on the Exjade box this morning. WOW. $5652.24 for a box of 28 which will last 2 weeks. Glad I only have to pay $33 towards it. Luckily because I'm having my copper in hospital I don't have to pay for any of it.

o It appears your Exjade cost downunder is very high!! In Canada we pay roughly your equivalent. but for four boxes.

[cathybee1]

Hi Chirley.

So sorry about the diahrrhea -- and so glad you are able to sleep despite it and that you're feeling well otherwise. 14 hours! Wow, that sounds like heaven to me.

Thanks for the well wishes. Bruce is feeling "pretty good" today, despite his Hgb being in the 8's. That is progress.

Hugs, Catherine

[Chirley]

Hi,

I'm home on pass for the weekend. Everything has gone well. I've had 5 copper infusions and 2 blood transfusions during the week.

The copper has already kicked in and my neuts have jumped from 0.1 to 1.2 platelets are up to 120

I will be having iron studies and a copper level done when I go back to the hospital on Monday.

The only side effect I've had from the copper is throbbing bone pain. My haematologist said that it was the same type of pain that you get when you first start neupogen. He ordered Endone pain relief, I only had one and by the time it wore off the pain had gone anyway. All in all this whole process has been easy and the benefits are already showing.

One thing that was odd, they weigh you daily in the oncology ward and I put on 6 kgs in one day !!!eeek. The nurse rang my doctor and he ordered Lasix and I had lost 3 of those 6 kgs by the next day. Unfortunately my room mate was also on Lasix and the bathroom was a very popular place.

One week down, two to go.



Regards

[cathybee1]

Hi, Chirley.

So glad your numbers are improving. They are quite impressive.

Thank you for sharing the insight about the effect of the copper on bone pain. Bruce has been having that as well, it was quite intense this week, but attributed it to the Neupogen that he's been getting.

Hope you are still feeling well and you enjoy your weekend at home.

Catherine

[Chirley]

Catherine, my bone pain lasted about 48 hours and sometimes it was only 1/10 othertimes it went up to 6/10. I didn't want to take anything for it but my doctor said that I didn't get Brownie points for putting up with pain and he insisted I take the Endone. I decided I like Endone so I better not have too much.

The pain was base of skull, spine, pelvis and sternum. I had to have an ECG to rule out heart problems causing the sternal pain.

Hope all remains well with both of you.

Regards

[Chirley]

Well things have happened. After I had weekend pass I went back to the hospital only to find they didn't have a bed. After waiting almost 5 hours I was finally shown to a bed in a share room which is what I'm used to BUT the lady in the next bed was unbelievable. I heard her life story and that of her husband before I even had a chance to say hello. I escaped into the toilet for 15 minutes hoping that she'd get the hint but NOOO, when I came out it was even worse.

To my shame, I lost the plot and walked out of the hospital. The thought of sharing a room with her for a week (or maybe two) was more than I could tolerate.

The nurse on duty called the Nurse Manager and they paid my taxi fare home. ($70.00) I'm ashamed of my behaviour and I have never thrown a tantrum before but in my defense, I have never had a private room despite having the top hospital insurance you can buy.

Unfortunately I have also been sick and I haven't eaten anything for the last 6 days or been able to drink anything for 5 days and I've become very weak. I went to my GP who said he was worried about my level of dehydration, he rang my haematologist who said just to stop taking the Exjade. I was told to just keep my mucous membranes in my mouth moist but I'm not so sure that's enough. I haven't passed urine since yesterday and I can hardly get a whisper out. I can't drink anything because I get stomach pain as soon as it hits my stomach. I don't think my GP was happy with the haematologists advice but what can you do?

Anybody else have this problem from Exjade?


Regards

[Birgitta-A]

Hi Chirley,
How terrible that you can't drink and eat! Good that you stopped taking Exjade. You have to go to a hospital and get some kind of fluid iv at once until your poor stomach can tolerate fluid again.
Kind regards
Birgitta-A

[Neil Cuadra]

Originally Posted by cme01

The thought of sharing a room with her for a week (or maybe two) was more than I could tolerate.

Chirley,

I don't blame you. Hospitals don't pay enough attention to patient parings. During some of my wife's hospitalizations she's been roommates with a patient who moaned loudly and continuously, a woman who was dying and having family members in and out constantly, and a woman with an undiagnosed and persistent cough while my wife was immunosuppressed. We understand that those patients need care too, but these situations get in the way of recuperation and can be real health risks. We had to ask for other room assignments and I think it's worth speaking up like that.

[cathybee1]

Oh, Chirley,

I am so so sorry you are having such a severe reaction to the Exjade. This is terrible. I agree with Birgitta, you need to get rehydrated right away. I'm surprised your GP did not admit you for IV hydration at once.

[Greg H]

Chirley,

My first roommate during my two week stay at NIH left his TV on all night on some religious channel playing seriously bad movies. I had to plug in my earbuds and use my phone to listen to Van Morrison all night. Not a restful night.

I didn't complain the next morning but the nurses were extremely apologetic. They turfed that roommate out to the Veteran's Hospital the next morning, thank goodness.

Let me echo the notion that you need to get some IV fluids ASAP. Like today. We'd like to have you around here a while longer.

Take Care!

Greg

[Chirley]

Thanks for your replies. I had an eventful night. I got such severe stomach pain I had to call an ambulance. I was taken to the local hospital ER and I can't say enough good things about them.

Apparently the pain was preventing me from breathing properly and my oxygen level was low and I had to be put on a mask also my heart rate was very high and my blood pressure very low so I was cardiac monitored all night. I was given 3 litres of saline and some IV med for stomach pain. I ended up feeling a LOT better. Apparently my blood tests showed some pancreas problem....never had that before. The hospital doctor is writing a letter to my GP to tell him about the pancreas thing and she also rang my haematologist (would have got him out of bed..oops) and he said that he was sure it was the Exjade.

My haematologist also told the hospital ER doctor that he didn't blame me for walking out of the hospital and that he had made enquiries to find out why I was treated like I was. He is trying to organise IV copper as an outpatient and I can't sing his praises enough, he's so patient and caring.

I had to eat a slice of dry bread and drink a cup of tea before I was allowed to leave the ER this morning and surprisingly it didn't hurt, just caused more diarrhoea but I can live with that if it's not painful.

Thanks for the advice, turns out I was sicker than I thought.

Turns out that having inconsiderate (or just plain crazy) room mates is common. Good thing this disease tends to make us more patient. However, I still feel embarrassed that I walked out.

Hope you all stay well.

Regards

[cathybee1]

Chirley, I am so relieved to read your post. I am so so glad you are feeling better. Don't know anything about pancreas problems -- and wondering if your electrolytes being so out of whack as they are when dehydrated could affect it. Another medical mystery! I hope the outpatient copper treatment can be arranged so you don't have to deal with any more roomies from hell.

Hugs, Catherine

[Neel]

Hi Chirley,
went thru ur posts, u r one hell of a though girl, keep it up and god be with u, god bless.

Regards,

Neel

[Neel]

read though as tough

[mausmish]

Chirley - it's a big relief to see your post here this morning. It's great that you went to the ER and that they're treating you so well. Thank goodness you got yourself rehydrated. That was scary.

[cathybee1]

How are you doing? I've been thinking about you.

No news here. Still waiting for bloodwork to see if the copper injections are helping.

The hematologist took Bruce off the Aranesp Tuesday, said it's just not working. Bruce was bummed out for a few days, but is feeling physically better now, he's saying he thinks it's cause he's not on the Aranesp, for whatever reason, it's good news.

Spring still hasn't arrived here, snow yesterday at 4000 feet (which is pretty low for late April), rain at our elevation, for weeks! Hope your fall is still lovely there.

Happy Easter if you celebrate it!

Hugs, Catherine

[Chirley]

Hello Catherine,

I'm doing well. After my overnight stay in the ER it took until Monday afternoon before I finally started feeling better. I haven't seen or heard from any doctors since then, (despite being told that I would get a phone call to organise outpatient treatment) so there's no further plans for any more copper at this stage.

I just looked back on my Hb numbers and it's a bit scary. My Hb dropped from 124 to 72 in 18 days after my copper level bottomed out. Just proves how much our bodies need copper doesn't it? Has Bruce got his latest results yet?

The weather here is wonderful. Clear blue skies, light breeze 25-26 degree days and 16 at night. We did have an afternoon storm 2 days ago but it was all noise and no substance, thank goodness. This is by far our nicest time of year. It's Easter Sunday morning here and we have a 5 day weekend this year due to our Anzac Day celebrations as well, both sets of neighbours are playing cricket in their backyards so there's a lot of laughter and fun around today.

I'm an athiest but I respect everyone's right to the faith of their choice and I'm more than happy to celebrate any and all religious celebration days. Isn't it Passover shortly as well?

Happy Easter.

[Greg H]

Chirley & Catherine,

I noticed that this Easter is Easter on both the Roman and Orthodox calendars -- and you've got Passover to boot, so it's been a big weekend!

My daughter lives in Astoria, Queens, New York, a neighborhood filled with Greek immigrants and Greek culture -- even the third generation high school boys on the street speak with each other in Greek as much as English.

In any case, when she was walking home last night about midnight, the sky exploded with fireworks -- the Greek Orthodox faithful welcoming Easter morning. I love that they do fireworks in the middle of the night for Easter! We never got quite that excited in the Baptist and Presbyterian churches of my youth. She was unfortunately a bit too late coming home from work to catch the candle light parade that preceded the fireworks.

Queens is like that -- the most amazing polyglot, multi-cultural place I've been: sari shops right next to taco shops; Indian and Mexican video stores facing each other across the street -- not something we have much of out here in the wilds of North Carolina. A very fine town for a celebration of any ilk.

Happy Easter-Easter-Passover to you both!

Greg