[marlene]

Well that’s not good….Is he going to try desferral? And if he is, can they do a skin a test first to check for an allerigic reaction?

[marlene]

Sometimes reactions are dose related. Like skin rash, digestive issues, increased creatinine levels. Many docs will stop therapy, let the problems clear up and try again at a lower dose. My husband never got to a full dose. He started low and worked his way up. Eventually, he stopped because his kidneys didn’t like it anymore.

I too would ask about desferral. It’s not fun but if you cannot do Exjade, that’s all that’s left.

They say it takes 10+ years to see side effects of too much iron but the young and old seem to be effected sooner. I think it effected John’s endocrine system early on. Also, his doc said it could accumulate in the bone marrow, suppressing production. But John’s FE was up to 4600 within the first six months of diagnosis.

[marlene]

Nplate is not approved for those with MDS because it appears to cause the disease to progress. It’s doesn’t appear to be well suited for those with BM diseases.

[marlene]

Bergit,

John is at a point where he will do a few therapeutic phlemobomites to get rid of the remaining iron. As long as his HBG is 10 or higher, he will have 250ml removed every other month. So this option is only good if you’re transfusion independent and can maintain/replace the red cells on your own.

He’s done desferral and exjade in the past and exjade is easier. With both drugs, he was never able to get to full dose though. It caused digestive problems. The Exjade, in the past year, was causing a rise in his Kidney creatinine levels. We also found that in the past year, his zinc and copper levels were low. We highly suspect Exjade was pulling out more than the iron. So you may want to keep that in mind and make sure getting trace minerals in your diet or daily vitamin.

Marlene

[marlene]

I thought this would be a good site to share with everyone. It lists the reports filed with the FDA on adverse effect of med. So I looked up Exjade and was surprised to see so many. I didn’t think Exjade had big market, hence the high cost.

So here’s the link…when you put in a new drug, it will give you info on the drug and you can click on the FDA safety reports see them.

http://www.patientsville.com/medication/exjade_side_effects.htm

Also, John has stopped his Exjade. I have one unopened bottle of 500mg tablets and one almost full open bottle sitting around…. .

[marlene]

That’s wise to hold off on his BMT until you’ve healed from all that you went through. You’ve both been through so much and we will keep you both in our thoughts and prayers.

Marlene

[marlene]

Hi Greg,

We’ve used cherry juice, apple juice and pomegrantine juice with the Exjade. I would just shy away from any juice with lots of iron it it like prune juice .

IMO, if other juices were a problem, they would have stated that in the drug insert.

Marlene

[marlene]

Oh…that’s what that means….when I googled it I got some very interesting replies….none were Expected Due Date.

I’m sure they’ll ready with platelets and blood when you’re ready to deliver. BTW….John had surgery when his platelets were at 30K. They started to transfuse just before and during the surgery.

Press your doc for an exact diagnosis. Like Jack said, this will help.

[marlene]

I remember how “spun up” I was when John was going through his diagnositc work-up for his blood disorder. Once we got the official diagnosis, I was able to focus on just one thing versus all the “what ifs” . Of course he was not expecting a child . This does add another layer of complexity to your situation. I adopted a “mantra” that helped me get through some of this…”have tenderness for the past, courage for the present and hope for the future”. You do have to take this disease a day at time. I broke it down into more managealbe phases instead of looking at all we were faced with. Like…. What do we need to do and focus on for the diagnositic work-up; then the treatment/chemo phase; etc… It sounds a bit premature for your doc to suggest “aggressive” therapy if he’s yet to see the BMB results though. Our bodies are amazing and recover. So be kind yourself, rest when needed, keep up the recommended pre-natel care, and from time to time, allow yourself to “feel sorry” for yourself. It’s natural.

So my questions…..Have you gotten a definitive diagnosis yet? And what are your current counts? Your signature has EDD but I’m not familiar with that.

Also, when is your baby due?

Take care,
Marlene

[marlene]

Is it Anadrol, an anabolic steroid?

http://www.rxlist.com/cgi/generic/oxymet_ids.htm

[marlene]

I understand about the feet….John ended up with nerve damage (peripheral neuropathy) from the drugs during his treatment and it really does impact exercise. He came a across one doc who said sugery could fix this but we’ve been able to improve it with non-invasive treatments so much so that I don’t think it’s worth the risk at this point. And the operative word is “could” and always the risk that it’s worse afterwards is a strong possibility.

I hope this gets resolved for you guy.

Marlene

[marlene]

John never got to full dose and then last year we had to reduce it more because his creatinine levels kept going up. He was on it for quite a while before this happened. So each time it went up, he stopped it until it went back down and then went back on at lower dose. In the early stages, you may want to have your liver and kidney function monitored weekly for the first month or so. And then monthly thereafter.

Marlene

[marlene]

You guys really need a break. I hope everything is ok with your husband and that you can enjoy this father’s day.

[marlene]

Why won’t these specialist talk to one another? This is very frustrating I’m sure. I would assume your dad’s cardiologist has various goal established around cholesteral and clotting rate and uses the meds to achieve that. One would assume that he would be the one to play with reducing or stopping meds to balance the risk/benefit. The plavix and cholesteral meds can effect one or all three blood lines so you have to ask the question, for those that have BM/blood count side effects, can you find another med to replace it, keep it at the lowest dose possible and still achieve those goals. This takes time and requires the doctor to be engaged at a more thorough and thoughtful level. You got to wonder if it’s ok to stop the plavix, why does he still have him on it? Is it overkill? And do you stop it cold turkey, or reduce it slowly to prevent any rebound effects.

And then, you wonder why the oncologist doesn’t take the meds into consideration as to how they are effecting his bone marrow.

rxlist.com is great place to look up meds.

Does your dad have good GP who can help him sort all of this out and look at the entire picture. Unfortunately, specialist only look at a narrow aspect of ones health. You cannot mess with part of your body without effect the entire being. There are more natural methods for managing coronary risks that are less harmful, but you would need to work with a doc who’s skilled in this at this point. They center around reducing the various risk factors like inflammation, homocystiene levels, improved blood flow, arterial health, etc with diet, exercise and nutrients.

You can spend some time on the http://www.lef.org website to research cardiac disease to help facilitate your conversation with the doctors.

Marlene

[marlene]

I am a believer in ruling out the simple stuff and for the docs not to speculate based on a cbc.

The simple stuff is to check for B12, B6, folate, zinc, copper, MMA and homocystience. Sounds like he might be b12 deficient if they have started to give him shots. B12 is key to producing red cells, a healthy bone marrow and a lower homocysteine leve (usu elevated in those with cardiac issuess.

Also, look at what meds he’s on. Medications can effect all three lines. Statins, blood thinners. BTW, all statins deplete your body’s level of CoQ10. We have a friend who’s heart meds effected his blood counts.

A BMB is required in order to see what is really going on and until they have it, they should not speculate on diagnosis because like Zoe said, there are other reasons. My husband had Severe Aplastic Anemia which causes all three lines to fail but there are no abnormalities with cells. I remeber when we started this journey, they jumped to the conclusion of leukemia before getting the results and they were so wrong.

Those counts are not bad and appear to be stable for now. It’s important to monitor the trends vs just one cbc.

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