vidaza/zarnestra?

[patti]

Hi,

In the wake of finding out that revlimid will not be available for awhile my MIL is now considering if she should start Vidaza treatments. I have gone back and reread every post on Vidaza and don’t feel any clearer about this stuff.

Mom is doing natural treatments with neupogen. She is on procrit but it does not appear to be working. The reason she’s now wondering if she should “do something” is because she can tell her disease is progressing by symptoms she is having. At diagnosis her blasts were above 30%. We have no idea what they are now. Although we have discussed the increased symptoms with the doctor they always just say she can try vidaza. Otherwise, they say she has no other options.

Is it upsetting the apple cart to start doing something when up until now she’s been managing on transfusions every 4 weeks? She’s not had any infections and really takes very good care of herself. She really looks to me for guidance here and will almost never make a decision without hearing me tell her I think she should or shouldn’t do something. Can you say “pressure?” I feel so torn. On the one hand I can see we don’t necessarily have a ton of time left (6 months, maybe? – who am I to tell?) and this is something we should at least try. What if it works? And, what if it doesn’t work and I end up hastening her death? I would feel awful. So often when I get put in this position with her I do just tell her she has to decide and she always chooses not to decide when I do that. Which is fine. But right now she just wants my advice and I don’t know what to tell her.

What is zarnestra? Is it something we should look into? I thought I read it was for older people. Mom is 75.

Any advice you folks can give would be so appreciated. I don’t mind giving her advice, I just want it to be good advice. I know I can’t make this decision for her but I also know she’s leaning heavily on what I think.

Thanks in advance.

Patti

[Suzanne]

most of these meds work better for one type of patient then another. A Dr. experienced in MDS should be able to give you information on this and a recommendation. However they do seem to push what is in trials in their institution. Zartnestra has been used for older patients in place of heavy chemo. The results were so promising (improvement in 30% is what I remember) they tried to get fast track approval from FDA but were required to do the phase 111 studies which should be in progress now. My understanding is that they had already been started in Europe. I had almost no side effects from Zarnestra and took it for a year in a trial to prevent relapse after chemo. It is a pill so easy to deal with. For more info you can contact my team. The study nurse is Jackie Greer- jgreer6@jhmi.edu – Dr. Karp at Johns Hopkins was the coordinator of the studies that were done all over the country and I believe in charge of the submission to FDA.

[patti]

Thanks, Suzanne. I was able to find a Zarnestra trial at the hospital where mom’s doctor’s office is. I’m going to check with the doctor. Unfortunately for us, mom’s doctor is nowhere near considered a good MDS doctor. But at the time of her diagnosis we got stuck with this medical group because of her insurance.

Patti

[Sandy L]

Hi Patti.

Keep trying to find a better doctor. Keep your own records of every test and every CBC results. Ask the doctor they are usually glad to give you your own copy. Then you can bring your recors to any new doctor you interview with. Call the local hospitals and ask for the head hemo list and then call each one and ask for the office manager or doctgor assistant. Do not ask the receptionist if they are familar with MDS. I would also make sure that the doctor’s office is also for oncology.
Mike started the Vidaza also because he felt the disease was progressing from the way he felt and from the difference in the lab results. It is very important that you keep the disease as MDS and not AML. With AML the treatment is much worse since the drugs are much more toxic. I can tell you that Mike is feeling the effects of the Vidaza. It took a good week but when it did begin he was very fatiqued and still is.

The Zarnestra seems like a better choice right now, but it is good to know that there is something else out there. Any chromosome abnormalties?

[patti]

Hi Sandy,

Thanks for your input. My husband and I were talking last night about maybe trying to find mom a new doctor. When I approached mom she doesn’t want me to do anything because she likes seeing the nurse practioner (who we usually see). Honestly, I think she’s just worn out and doesn’t want to deal with anything relating to MDS anymore. I’m not exactly sure. But I will keep the info you gave me in case we decide we just have to switch.

Have they given you any idea how long they think Mike will be fatigued with the Vidaza treatments? I know that is something mom worries about because she has to care for her daughter everyday. Mainly just fixing her meals and such but she does have to be able to function. Is Mike so exhausted he’s in bed most of the time right now?

Mom doesn’t have any chromosome abnormalties. And we believe she got the MDS from a bad root canal. Oh well. Nothing we can do about it now.

In talking with mom we sort of came up with this game plan – please tell me if you think we’re way off.

We’re going to request the doctor to a BMB because she hasn’t had one done since her diagnosis more then a year ago. At that time her blasts were greater then 30%. If it’s 50% or under she’s going to stay on the course she is now. Complimentary medicine. Natural foods/supps and the shots. If her blasts are greater then 50% we were thinking to try and get into the Zarnestra trial or do the Vidaza. At that point we were thinking the risk of AML outweighs any risks/concerns she has about the chemo. Does that seem like a reasonable course of action? It’s so hard to know.

I hope Mike gets better daily.

Patti

[Sandy L]

Hi Patti

Mike is wiped out from the Vidaza or the fact that his hemo is so low. He does not experience any shortness of breath but he does nothing. The mornings are especially hard. As soon as he finishes his bathroom toiletries he has to lie down. In the afternoon he gets a short burst of energy but he still does nothing exerting. The only activity is going to the doctors office or the hospital. Tomorrow we go for another CBC and 5 platelets and 2 more units of blood.

I have never heard that you could get MDS from a root canal. Why do you think that?

I was under the impression that you were considered to have AML if the blasts over 30.
It is a hard decision. Mike has me to look after him and your MIL still has to look after someone else.

I will keep you informed and I hope that the next BMB your MIL has does not show any significant change .

[patti]

Hi Sandy,

I appreciate the information on Mike and his reaction to the Vidaza. It sounds like mom will either need some live in help from my husband and I or we’d better go for the Zarnestra.

There seems to be a lot of discrepancy when it comes to how many blasts determine AML. Even on this list many patients have heard many different numbers (I asked one time because I thought what you do). It seems like folks on the list who are going to MDS speciality doctors have BMB more often then we have. Our doctor has always told us, “why bother?”

I would like to know how Mike does. How long does it take him to get his energy back? Does the Vidaza help? How often they do a BMB on him? Please keep me posted as you go through his Vidaza treatments.

The root canal thing is another story. I’ll give you the short version. When a person gets a root canal and it’s “cleaned out” before they finish, no matter how hard an endodontist tries, you can never completely clean out the infection in the root unless you remove a little bit of the tissue (and they usually don’t do this). The theory is that the infection sits there and festers for years but if a person is generally healthy their body fights it off. However, if they undergo some extreme amount of stress and the body cannot fight the infection then it spreads throughout the body causing diseases of all kinds. The research done on this tried to prove the theory by pulling the affected teeth from people who are sick and implanting them under rabbits skins. When they did this in 4000 cases, all 4000 rabbits got the exact same disease that the person they took the tooth from had. So, if someone had cancer, the rabbit got that exact cancer. If someone had heart disease, the rabbit got heart disease.

In mom’s case, she only has one root canal in her mouth. She spent 3yrs taking care of my FIL at home with Alzheimers and the last 2yrs were near torture (on her and us). She literally has never been sick in her life (never needing antibiotics). All of a sudden her tooth with the root canal started bothering her when dad was sick but she didn’t have time to take care of it. A few years after he died she popped up with MDS and her tooth was STILL bothering her. Anyway, it’s a lonnnnggggg research thing but we do believe that is how mom got this. There is a book out called the Root Canal Cover-up that is very good. There are only 3-4 dentists in the US that believe it. We managed to find one in Washington State and one in California. Unfortunately, by the time we found out about mom it was too late to fix. We’ve never been able to get her platelets up enough for either dentist to go in and fix the tooth. I often wonder if we pulled that sucker and put it in a rabbit what would happen……

So there’s a long story short. If you can call that short. Sorry to bore you.

Take good care. I’ll be thinking of you and Mike in the days ahead.

Patti

[Sandy L]

That was quite a story, and I was not bored at all. What a shame if that is how she contracted the disease. Mike had his tx today and 5 units of platelets. When I came to pick him up he looked so rosy that I thought he had a fever but he did not. He is so tired after the tx. Is that common? You would think that he would be full of energy but that is not the case. I will kepp you posted. We go again to the hospital tomorrow to be cross-tped and the more platelets in the emergency room on Sat.

[frank]

i will be really exhusted after each blood tx, i will get my energy back after a week. maybe it was the blood or something else. i really don’t like the tx experience, especially you saw the blood come into your body, and the counts is dropping everyday, it was a frustrated experience.

i alwasy look into the post about vidaza, since maybe i have to get back the drug someday, hope everyone have a good outcome after the drug. so many unknown for people with low numbers in their counts, i continue ask my Doctor and everyone i knew, it seems no data for individual categories, especially for RA(or RARS), and no data for the fatelity… you have to be really careful if your number is low during the down period.

Frank

[Sandy L]

Hi Frank
Thanks for posting. Hope you are feeling well! What is your life like? Do you work? So young and such a young family to look after.

[patti]

Hi Sandy,

My MIL SAYS she always feels fine. She almost never says she feels tired. Occassionally she’ll say she notices a small boost from a transfusion but in general she says she doesn’t notice. I can’t tell you if she’s lying or not because she tells everyone the exact same thing. Honestly, I believe it’s the grace of God that she doesn’t feel bad when she’s low on blood. She had a transfusion today and it was just like always. They start out asking if she’s short of breath, tired, etc. and when she says “no” to everything they ask her why she’s there! Because she always says she feels good we have to go strictly by the numbers for when to transfuse her. She can go to 25 HCT and 7 or 8 HGB. Any lower and she does start to have chest pains.

I’ll keep you and Mike in my prayers.

Patti

[Sandy L]

Hi Patti

How is your MIL doing? Thinking about you.

[patti]

Hi Sandy,

Thanks for asking. Mom seems to still be holding her own. She’ll be due for more blood on the 4th if she continues to trend as she has for the past six months. We are now investigating getting a new doctor. I’ve talked to his office but seem to have trouble getting him to call me back. That’s not a good sign! Also, I found out he’s actually in the same group of doctors as her current doctor. So, we’ll see what happens. I’m hoping to hear from him this week.

I think like everyone else on this list, she just gets tired of dealing with this disease. She feels like she spends her whole day juicing, taking supplements, watching her eating. I think doing all that stuff exhausts her.

All in all, hanging in there right now. Thanks for asking. How is Mike doing with the Vidaza? We’re still considering it.

Patti

[Sandy L]

Mike had another day of Vidaza. He is very nausous. Nothing is working, but at least he is not vomiting. That only happened once and it was pretty bad. Are there any foods to avoid that may be adding to this continuous n…. feeling?

[eve]

is mike taking any anti nausea medication

my dad takes zofran 1/2 hour after his shots – the only problem with that is that zofran is very constipating

eve

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