Watch and wait ends, Vidaza begins.

[cathybee1]

Thanks, Chirley, I'll pass this along.

[Chirley]

Hi Catherine,

I gave blood for the reearch people yeterday. They are looking for the APT7A gene.

My last blood test (last Tuesday) showed my copper has dropped a little to 13.1 which thankfully is just at lower normal levels. However, it means I have to keep on my weekly visits at the moment. If they drop again on todays test I may have to come back twice next week.

My haematologist is referring me back to the Prof of metabolic medicine for monitoring of my other problems. i.e. the MTHFR gene, the Vitamin D deficiency, the osteoporosis etc, etc. I saw my neurologist yesterday and I told him that I thought my neuro problems were improving but all my reflex tests etc came back with the same abnormalities and he said that it was wishful thinking on my part.

So it looks like ISQ.

Hope Bruce feels better since his transfusion.

Regards

[Chirley]

Forgot to mention, I got the results of todays CBC and biochem. I still have lymphopenia and for some reason my platelets are down a bit to 130 and I suspect they are not functioning normally because I'm bruising easily which is unusual for me. Protein is low and liver enzymes (AST,ALP,ALT) just slightly higher than last time but continuing a worsening trend.

Teeny dog was bad on Sunday, thought Id have to have her euthanised on Monday, I was quite upset but I couldn't take her to the vet because I had medical appointments (when are they going to stop??). Well, she's improved and back to walking on all 4 legs again and looking very happy. I think it might have been my fault that she relapsed. Because she is on a strict diet I wanted to give her a healthy treat. I gave her 1 macadamia nut. I've since found out that these can cause bad joint pain and swelling in dogs. I will NEVER do that again.

Regards

[Birgitta-A]

Hi Chirley,
What luck that you didn't have the time for the vet when the poor dog had got a kind of nuts that gave joint pains!

You know I don't think the neuro tests can measure the function exactly - maybe you can feel that you have better control before the tests will show that.
Kind regards
Birgitta-A

[cathybee1]

Hmmm, my last reply didn't take, it seems.

What a scare you had, Chirley, with the pup. I'm so glad she's doing better. I never knew mac nuts were toxic for dogs -- just knew about almonds.

I'm still keeping fingers crossed that once you stabilize the copper level, your neurological symptoms will improve -- and in a measurable way.

Bruce got an informal readout on the copper excretion tests from the nurse who does the push IV -- she said it was 3x normal -- I suggested to him that he discontinue the herbal chelation for a while.

Bruce blew out another vein during the last IV -- he is reconciled to a port now, it's just a matter of when he can be scheduled to install it.

It suddenly got warm here -- around 100 F. Just in time for our Independence Day festivities. Even the dog doesn't want to go outside right now.

Hugs, Catherine.

[Chirley]

Hi Catherine, good to hear from you. Interesting that Bruces copper excretion is high. It definitely looks as if we both have the same problem. My 24hr urinary copper is 9.6 when normal is <1.

5 minutes ago I got a phone call from my GP to tell me that my blood tests from last week weren't very good. My copper has fallen to 12.3, ceruloplasmin is 0.19 and liver enzymes have increased again. I'm not looking forward to seeing my haematologist tomorrow, I'm going to have my treatment bumped up again, I can feel it in my bones.

BTW, I was checking out copper sulfate and weight gain (I'm still gaining weight and I'm truly not eating as much as I used to). It looks as if they have experimented with copper and various animals to see if they could increase productivity and all the results point to increase weight gain. This happens in 2 ways, first by increasing food intake (I'm always hungry, but won't give in) and then by metabolising the food more efficiently thereby increasing weight gain. I don't stand a chance of losing weight with both the hydrocortisone and copper working to increase it. Everyone tells me I look well, this is a euphemism for fat. Oh well, I suppose it's a small price to pay for better health.

Also I think Bruce will like his port once he's used to it.

Regards

PS happy Independance Day. Our Australia Day is 26th of January.

[Chirley]

What's going on?

I went to put on my favourite pair of cords and they won't do up!!! I wore them a week ago and they were a little snug but now they don't button up and the legs are really tight. I have been eating very little and I just don't understand.

Breakfast is a bowl of Special K with no fat milk and a cup of black tea with 2 Equal. No morning tea, lunch or afternoon tea (if I get really hungry I might have an apple) and dinner is lean meat/fish with salad (no dressing). I drink black tea during the day. I have been eating this for the last month or so since I first became concerned about the weight gain. I don't weigh myself so I don't know the amount of weight gain just that I feel big and my clothes don't fit any more.

I did buy a breadmaker and decided that once a week on a Sunday I'd treat myself by baking a loaf of bread. I've done this for 2 Sundays had 2 slices of the bread each Sunday and given the rest of the loaf to my parents. Surely, that isn't excessive?.

I want to ask my doctor to investigate and find a cause of the weight gain. I'm not burying my head in the sand am I? Does my diet sound as if it's the cause of my weight gain? I used to eat more than that and maintain my weight. Does this just happen after menopause? If it's the copper causing the weight gain then I don't know what to do.

Help.

[Chirley]

I spoke to my doctor about the weight gain and he's going to do some research to find out if IV copper can be the cause. He said that the reduction in hydrocortisone should have prevented weight gain caused by steroids. I have developed a low blood protein level but it's not very low at 59 (65-?)and I don't know if that can be the cause. The doc says it may be a hormone problem and he is going to retest some endocrine functions including thyroid. I'm just pleased he is taking me seriously and not assuming that I'm just eating too much. He did mention fluid retention and frusemide but then he went off on a tangent and didn't get back to that subject.

I've been asked by the doc to increase my oral copper again (from 9mgs to12mgs day) but if I get diarrhoea I will need to decrease the oral again and increase the IV copper to 2 days a week.

Ambulance is here to take me home.

Regards

[Neil Cuadra]

Chirley,

I think that a sudden gain in weight is much more likely to be a result of fluid retention than of the other possible causes you mention.

Two weekly slices of bread wouldn't make such a noticeable difference, and you're probably eating them instead of something else anyway. Since you watch what you eat, that's another reason that this probably isn't an eating issue. Weight gain can also result from a drop in physical activity (the same number of calories taken in, but fewer of them used) but that doesn't sound like the case for you either.

I hope the doctor can determine the cause, and a simple way to correct it, especially if it's more than a few pounds in a short amount of time. If it's only a couple of pounds the doctor may not consider it important or medically significant. Of course not fitting in your clothes is still an inconvenience.

[cathybee1]

Been off a few days, and was glad to catch up with you. 2 days of visiting with friends around Independence day, 1 day of family crises, and 1 day with a Bruce crisis. When he went in for his IV injection yesterday his blood pressure was very low, he was woozy, and had an irregular heart rate. Bruce thought he might end up in the hospital. No copper injection as a result. After a phone call with the cardiologist, Bruce was advised to discontinue his blood pressure medication. Today, he has been feeling fine, even took a walk up the hill this morning.

He is scheduled for a visit with the Doctor on the 13th to go over the excretion tests and have another IV infusion. So in the meantime, his veins will have a chance to heal up some. Bruce made an appointment for a port installation on August 8th.

Enough of that...how are you? How are you feeling? How did the visit with the doctor go? How are you tolerating the additional oral copper?

The weight gain is puzzling, what you're eating is what is considered a weight loss diet here. Hope it was just a temporary situation.

Hugs, Catherine

[larryp]

Hi everyone. I am a new member as of today.

I was diagnosed with MDS in December 2009. I had a series of Vidaza treatments over a 5 month period and then in June of 2010 had a marrow transplant. I seem to be getting stronger as time goes by but run out of gas easily.

I filed a claim with the VA last week because of my exposure to Agent Orange in 1968 during my tour of duty if Vietnam, but based on what I have been reading, I don't expect a favorable response from the VA.

Thanks for all you do and the information you supply.

[Chirley]

Hello and welcome Larry.

I see you posted in another thread as well. Glad to see your transplant went well.

I've been well and just pottering around the house. There is a viral illness going around here and it's school holidays as well, so I thought I'd stay away from the shops and public areas as much as possible. WCC is good but I still don't want to catch anything I can avoid and the shops on school holidays are a nightmare anyway. School recommences on Tuesday thank goodness.

I increased my oral copper to 12mgs got diarrhoea and reduced it to 9mgs again. I thought I'd have to go in last Friday for extra IV copper but I rang my GP for my blood tests from Tuesday. The copper wasn't back yet but the ceruloplasmin level was back and had increased to .22 so I decided to forego the extra copper on Friday and cancelled my appointment. It'll be interesting on Tuesday to see what last Tuesdays copper level was. I found out that ceruloplasmin, like ferritin, is an inflammatory marker so I wonder about it's accuracy when there is a sudden rise in an otherwise downward trend. Like I said Tuesday will be interesting.

Towards the end of the last copper infusion I felt very swollen and a little breathless, as if my lungs didn't have enough room to expand properly to be able to take a deep breath, I just generally felt uncomfortable. I still have fluid retention and weight gain problems. I asked the pharmacist if the IV/oral copper could be the cause. There was a bit of discussion between the pharmacists and the consensus was that they THOUGHT copper MIGHT affect metabolism. It was pointed out to me that copper sulfate is a salt and can cause fluid retention but I also have consistently low blood pressure (90/50) and low pulse (48 to 50) so it's contradictory.

Catherine, it sounds as if Bruce gave you a bit of a scare the other day. I'm glad that reducing his BP medication did the trick although I don't know if I'd like going for a walk in the heat you've been experiencing hypotension or not.

Well, it's 2 in the morning and I'm getting a little tired so I'll say goodnight.

Regards

[Chirley]

I went into daycare for my copper infusion yesterday and I got the copper level from the week before. Despite the ceruloplasmin having risen to normal levels, the copper level had fallen again, down to 11.3 now. The doc gave me the option of coming in twice a week for IV copper or to just have the once a week copper and let the levels slowly drop until I start needing transfusions again. Some choice!!

I mentioned the weight gain again and the doc said it was probably due to the fluid load I'm getting with the copper infusion but I'm not buying that one. I only get about 750mls of fluid with the copper and my kidneys work okay, it doesn't seem right to me. I weighed myself for the first time in 3months and I've gained 8kgs (17lb) in 12 weeks. Last week the doc said he was going to order thyroid function tests but he didn't, so I mentioned it to the nurse yesterday and she added it to the blood test request but when the doc gets the results he'll know that he didn't order it and I hope he doesn't get offended.

I'm thinking of getting a second opinion on the whole MDS versus copper deficiency thing and depending on the results of that, whether the treatment I'm getting is appropriate. I'm kind of confused at the moment and don't know what to do.

On the good news front, little dog is getting better with the arthritis medicine (Meloxicam) and is able to be totally independant again and for this I'm very thankful.

Regards

[cathybee1]

Good news about the pup!

Sorry that your copper levels aren't holding.

I think a second opinion is always in order.

I would like to find ANYBODY who could tell us what the connection between copper and MDS is.

But...now I'm getting confused. Weren't your neurological symptoms attributed to the copper deficiency. So, for you, it's more than the MDS issues, yes?

We saw the doctor yesterday. Bruce's blood pressure and heartrate were good, so he had an IV infusion. There was quite a discussion about the implications of the urine excretion test. Bottom line -- it said something was going on, but the doctor isn't sure what. The doctor is ordering an analysis of stool samples. He thinks that knowing if copper is being excreted in kidneys, intestines, or both will help him understand better what is going on. In the meantime, no more chelation. Bruce will have 2 pushes next week, and more bloodwork, then we're off for 10 days on another trip -- this is the last "big" trip this year. And as soon as we get home, the port is going in. The surgeon did not want to do it before the trip.

In the meantime, we did get a source for oral copper sulfate, and Bruce will start with a very small dose of that in addition to the copper chelate pills he's taking.

We have had Bruce's daughter and 10 year old granddaughter here for a week. It is tiring to be around an Energizer Bunny - Bruce is missing his naps. But otherwise, he's still feeling pretty well.

Hugs, Catherine.

[Chirley]

Hi Catherine,

I'm glad you found some copper sulfate but just be a bit careful with the dose. I definitely get stomach pain and diarrhoea when I take too much. I have the drug information officer at the Mater Public Hospital doing some research for me (I did the right thing and told the haematologist I was doing this). The DIO rang me 2 days ago and told me that so far he's found out that copper sulfate can cause abdominal pain and diarrhoea (I could have told him that) but the mechanism for causing it is unknown. He's going to do more research to find out about the weight gain and any other potential side effects.

I got last Tuesdays copper level yesterday and it has risen to 12.1, I needed this improvement as I was becoming very negative about the treatment and the substantial chunks of my time that I was losing. The doc still wants me to come in twice a week for the IVs but hopefully that won't have to be a permanent thing. Yesterday my day started at 7.30 am when the ambulance picked me up and I got home at 7.00pm, it's very tiring.

I'll try to attach some very basic studies on copper and weight gain in animals. Just an excerpt or two from a couple of studies that I found when I Googled. No, it won't let me, it says it's an invalid file. No problems, just Google copper and weight gain.

I hope you enjoy your time away. I'm still planning a trip to Tasmania in October all going to plan.

Regards

[cathybee1]

Thanks, Chirley.

That's wonderful news about your copper coming back up...and my heart sank a little reading you will have to face TCFH 2x/week again. I re-read some of your back posts, and was reminded of my mother's struggles getting her Coumadin (Wayfarin) levels stabilized. I'm hoping you are getting closer to getting dosing regulated so you can spend more time doing enjoyable things.

Bruce's doctor wants B to start at .25 mg extra of oral copper sulfate and work up from that. Hopefully he will be able to separate any changes arising from taking that from all his other symptoms.


It is so nice to make fun plans. Here's to more of them!! I can't imagine many people looking forward to ambulance rides, 12 hour days, and cozying up to an IV. Tasmania sounds so exotic to me. Of course all I knew about Tasmania was the Devil. I googled the place -- it seems like it's like our Alaska - the photos are breathtaking. Now I want to go too!!

Hugs, Catherine

[Chirley]

G'morning.

I went to daycare yesterday for my regular 4mgs IV copper sulfate which is continuing at twice a week. I was really surprised when the nurse took my observations that my pulse was ...20. I knew I wasn't feeling very well and had already told the nurse that something was wrong but that I didn't know what it was. Well that gave me such a fright my pulse immediately increased to 48.

The nurse told me that I should tell my doctor I had a low pulse rate (surely the nurse should do this) but I had already seen the doctor and now he's away on holidays. I know sometimes I feel as if my heart beats really fast (feels like 200) then stops for a beat or two (feels like I'm dying) then starts again with a big thump a few little thumps then back to normal. I've never mentioned this to anyone because I thought it was just anxiety or something like that, now I'm thinking it might be significant.

My thyroid function test was normal and the doctor offered to send me to a dietition. I was frustrated beyond belief. I have been fat and I have been skinny but I have never been in denial about my food intake. When I was fat I readily admitted I ate too much and vice versa. I know I'm not overeating and I have gained 2.2 kgs (5lb) this week alone. I have decided to get that second opinion and I have an appointment with my GP to get a referral this morning, I will also mention the slow pulse problem to him and see what happens.

All in all there is not much difference in the blood tests. Hb and WCC good, platelets 120 (sl lower) protein 58 (sl lower) LFTs =ALP, AST, ALT sl higher. Others all the same.

I have just finished doing my taxes for this year and I will get all my tax back thanks to paying for the Vidaza myself. I had so many tax offsets that I have credits left over for next years taxes as well. I will have a nice little windfall to spend in Tasmania, it's going to be a good holiday. I can't wait.

Regards

[cathybee1]

Haha, Bruce and I have also thought that getting taxes back was (almost) worth paying the high medical bills.

2 weeks ago, Bruce did not receive his IV copper because his blood pressure was very low, his pulse was slow, and his heartbeat was irregular...the cardiologist attributed it to Bruce still continuing with his heart pressure medication, but now I'm wondering.

The good news is that Bruce took a 1 week breather from the copper and everything resolved. This will be the first week he has had it 2x in several.

Please let me know if you learn anything about your weight gain. Bruce's weight hasn't fluctuated much, but he has quite a bit of bloating, explained as connected with his high bilirubin (this predated the anemia and neutropenia).

Sometimes it seems that they are throwing darts against a concrete wall, doesnt it?

Hugs, Catherine

[Chirley]

Hi,

I'm in daycare having copper as we speak. Nothing much to report. Disappointingly, the copper level from Tuesday has dropped again despite the twice a week visits. I'll just have to wait and see what the doc thinks when he gets back from holidays or where ever he is. Frustrating isn't the word!!

Also I've been started on daily Frusemide for fluid retention. This has turned TCFH into something even more diabolical. I'll look upon it as continence training and try to see the positive side of sitting the whole way with my legs crossed and whincing at every bump in the road. On the upside, I do feel better with the diuretic.

Hope Bruce copes well with his 2x week regime. I note his high bili level. My bili level is always lowest level normal or below normal so nothing in common there.

Infusion just finished.

Regards

[cathybee1]

Hi Chirley -- the copper is difficult to get regulated, isn't it. I'm still jealous that you get your results back so quickly, tho.

Omg, how could TCFH get any worse? I can't imagine that problem on top of everything else. Ugh.

Bruce has been feeling fine, but had bloodwork this morning His Hgb has dropped to 8.4, so he will be going for a transfusion tomorrow.

Yes, the high bili level was the first symptom of anything wrong that Bruce had -- 15 years ago. It has gone up and down, but is always too high. The herbal chelation was an attempt to address it.

We will be gone for 10 days starting Tuesday, then right after returning from our trip, he is scheduled for the port surgery. Bruce is more and more convinced this is the right step to take now, and that his only chance of getting his copper levels regulated or even knowing if they will depend on regular infusions.

We had a little meltdown last nite when my niece, who is a nurse, told me that she doubted the medical people would leave the port unaccessed in between visits. Which put a crimp in the sales job the doctors have given Bruce (as in, "it will make your life easier.") The family doc just happened to be in today when Bruce was in for his copper treatment -- and reassured Bruce that he and I will have all the training necessary to make the port work as advertised. And save the multiple trips each week. That will make our vacation a little less stressful, I'm sure

There's still a little worry about the surgery and recovery, but that is to be expected. Give a pat to your babies for me.

Hugs, Catherine.

[Chirley]

Hi Catherine,

I don't understand about the port being accessed between visits. It's my choice whether I leave the needle in or not and at twice a week I choose not to, so I have a new needle inserted each time, given the copper and then removed. If you decide to leave the needle in, it's no big deal, it's hardly noticeable.

If the port isn't used for 2 months then it needs to be flushed with Saline and Heparin just to keep it patent.

I was just given (pharmacist) a copy of a research article about the MTHFR gene and Wilsons Disease. The article isn't really pertinent to copper deficiency but I think it establishes a tenuous link with homocysteine and copper. Homocysteine is sometimes high in people with liver disease. I have had a MTHFR genotype test done (18-20 yrs ago) and I tested homozygous for one of the mutations. I was never told which phenotype I had though. I will be mentioning it to the Prof of Met Medicine when I finally get an appointment. At the time of testing for the gene my homocysteine level was well above normal but has come down with the folic acid tablets and B12 injections. However, the thinking seems to be that even if the homocysteine is reduced it doesn't stop the problems caused by the gene mutation.

I hope Bruce can take advantage of the transfusion effects and that you both have a wonderful time away.

Regards

[cathybee1]

Yes, I doubt whether we will leave the needle in...the idea was that I could do one of the two per week copper infusions at home. And both if necessary -- during the winter, it is often impossible to get over one of the two 4000' passes to the doctor's office. Bruce is concerned about contamination if the needle is in -- even with the dressing on, because of where we live, and also because he is very neutropenic.

That article from your pharmacist sounds very interesting -- tho Bruce hasn't been tested for that gene. Could you provide the authors and the name of the article? It's possible I can find it on PubMed.

Bruce is off getting his transfusion -- I am going to take the dog for a short walk and then take him swimming. He loves to swim and won't get to do much of it while we're gone.

Hugs, Catherine.

[Chirley]

Hi Catherine,

I have the address but I couldn't access the article so the pharmacist got it for me. Note this is the address not a link.

http://www.sciencedirect.com/science...68827811001589

BTW to get either of my dogs to swim I'd have to push them in and then you'd see a miracle, they'd walk on water to get out.

Regards

[cathybee1]

Hi Chirley,

I actually laughed out loud reading your post. Our last dog Obie was like yours -- though he would try to walk on water, and when that failed, would make a hasty exit.

Gus got another swim today, it's getting too hot to walk him, and he will fetch sticks endlessly in the water, so good exercise.

Hugs, Catherine.

[Chirley]

Hi,

Daycare again today. Nothing very different. Lymphocytes still low, Hb still normal WCC still normal, platelets trending lower again, protein still low, liver enzymes a tad worse again. The new thing is a low anion gap. This has always been sitting on lowest normal but is now below normal, I assume it has something to do with the liver disfunction and low protein.

The copper level will be available Friday and I'm keeping my fingers crossed.

Regards