Hard not to be so sad

[patti]

I’ve known for more than a year that mom’s MDS would progress some day. And I guess you always assume it will be tomorrow, not today. But for the first time her doctor put her hand on her knee and told her she needed to have a conversation with her family tonight about how much intervention mom wanted. The doctor was about 90% sure (without actually doing a CT scan) that mom did have a stroke last week. She also checked mom’s pitichiae which has covered so much of the lower portion of her leg you can’t see the white leg much. After checking a few other areas of pitichiae she told mom she’s done remarkably well this past year and has always felt good but taht now we are probably going to start having to put out “fires” pretty frequently. She said there isn’t anything else she could do unless mom wanted to try Vidaza, which only has about a 30% success rate. She suggested mom put her affairs in order. In appears that mom’s bone marrow is no longer producing platlets. As a family we have decided that as long as she’s still feeling well she will get platelet transfusions weekly until she becomes refractory to them. At that point mom will have to decide if she even still wants to get blood transfusions anymore.

Tomorrow we see a new doctor. We’re not expecting much change but it never hurts to have another brain thinking for you.

We knew awhile ago our time with mom was running out. But now that it seems imminent, it’s a little harder. Sad, that’s the only way I can describe my heart. For my MIL who has always prayed to be the one to care for her daughter forever and for my SIL who’s losing her mom and best friend.

I’m exhausted. Good night folks.

Patti

[sugarwhale]

Dear Patti,
I’m so very sorry that you are losing your mom (mother-in-law?). There’s nothing I can say to lessen the sadness and heartache that you and your family are feeling.
There’s just one thing to say: Patti, don’t give up! Yes, Vidaza works for less than 30%. But maybe it will work for your mom. What about ongoing clinical trials? What about something new like Revlimid or Decitabine? What about a specialist in Alternative Medicine? What about another country (e.g. Japan, Italy) which is ahead of us in research?
Patti, don’t give up! Please don’t give up!
Best wishes,
Janet

[VIOLA]

Dear Patti! don’t give up!!!!!!!

[Suzanne]

Treatment that had a 30% chance of working did and has now given me years of quality time with my family. If it does not have a lot of side effects that cause problems, don’t dismiss that alternative lightly.

[Jerry]

(((Patti)))

I fully agree with the other posts about not giving up, but in addition, if your MIL’s time is near, remember all the good times that you have had and all of the wonderful things that you have done for her. I am not trying to be negative, just realistic. There will come a time for all of us when we have to make the decision about how much more treatment we wish to have. I urge you to do as the Dr. suggested and talk with your MIL and find out her wishes. In the meantime, we will pray that Vidaza works in your MIL’s case. Our thoughts and prayers are with you. Try to get some rest … your health is important too.

Jerry

[Neil]

Hi Patti,
RAEB-t is very difficult to deal with. Both the patient and family have very touigh issues to handle.
At some point quality of life becomes a primary issue. Comfort and excellent care predominate.
Is Vidaza an option? Maybe. Side effects are generally mild if any. Some have had unpleasant reactions.
How much time will it buy?
Hard to tell.
What are her thoughts on Vidaza?

[CarolineG]

Oh Patti….

I feel so sad for all of you. I wish that I could do something to make everyone’s pain go away.

I hope that the new doctor you see today will be able to shed some new light on your Mother-in-law’s situation. Don’t give up.

In the meantime you have my prayers of hope and peace.

Caroline

[frank]

Patti;

don’t give up. i knew it is hard time, but like what you did said to me, don’t give it up.

Frank

[hope&faith]

Patti,

I’m so sorry, it’s selfish because I know in the future I will be going through it with my father. Stay in the fight… Dont give up…

jeff

[patti]

Neil,

We have talked about Vidaza extensively. Because mom is walking around with only 500 ANCs at any given time we felt like she would just be a walking time bomb for a massive infection from her counts dropping. She did seriously consider it. But to us, it seemed like she would lose her life faster if she did the Vidaza because of the high risk of infection and her low ability to fight it. We finally decided a short while ago that she’d probably have more time left if we just stayed the course we were already on. And, we did buy her a lot of time. More than 9mos. worth from the original prognosis. We looked into to several clinical trials but she always was minus one or another of the criterias.

While we believe God is the giver and taker of all life, it is still hard. It is her daughter we all ache for.

Better get this day going. I have appts. with her today.

Thanks folks for the support. I’m trying not to be sad.

Patti

[eve]

patti

some patients on vidaza take an antibiotic to help prevent infection

eve

[Terri]

Patti, I can’t imagine how hard it must be. I sit and fear this day for Bob. He is currently on Vidaza, He started as an raeb-t. Not saying that it is a cure, but it has made him stable enough that he can still enjoy life, naturally with limitations. His plts are low about 59 right now and his legs are grayish tint near the ankles. Up until the Hurricane recently his Hgb was hanging in the hight 10 and mid 11’s reds were always normal. For him Whites are always too high. Last dr visit they bmb showed his marrow is very packed with a lot of immature cells so we shortened the span between vidaza rounds back to every 28 days. Bob gets tired a lot but He is here and gets to enjoy life and our beautiful grandson. Vidaza could be an option, but it could be a long period option, Don;t see bob getting off of it.

Whatever you all decide we are with you, just wanted to give you some insight on others experiences with the Vidaza. And as eve said Bob is on Levaquin an antibiotic. as well as all of the other Immune booster and vitamins etc.

My prayers are with you,

[Suzanne]

Whatever your Mom thinks is right for herself probably is right. We will all understand and support any decision made. I am one of the 1st to say there is a place where I would say to let things take their own course. I haven’t gotten there yet and hope not to soon but it is something that I have discussed with my famly so if/when it does come it won’t be a shock to them.I second Neil-quality of life is a major factor involved in making this decision for most of us.

[shirlsgirl]

Hang in there, hoping things get better….

Jody

[patti]

Hi Folks,

Last night I spent all this time typing out our latest news and when I went to post the website died on me. Arrgghhh. I lost my whole post. Maybe God wanted me to give a shortened version! So here goes (but I don’t think it’s any shorter)….

We visited mom’s herbalist first yesterday and when mom was away in the bathroom she told me that she didn’t want to discourage mom, but from looking at her eyes (she does iridology) her body is in a big state of breakdown and she’s very weak. Remember this, because I’ll come back to it in a minute.

In comes the new doctor. Dr. Lanier is fabulous. We switched immediately. He was visibly angry when he heard what Mooney has said to us (Mooney is his boss). Especially not giving us another biopsy so we could decide about the Vidaza. How are we supposed to make an informed decision? He did a CBC and thinks got real interesting, real fast. Last week mom’s white cells were 1900. They’ve been running around there for the past year. Yesterday, they were 6900. She’s been running 300 ANC, yesterday 4200. Anyone concerned yet? We all were. It’s only been 7 days since her last CBC. He did a blood smear to check for blasts in her peripheral blood. He finds ONE. Yes, one. That’s it. But her platlets are still only 13K and she’s spontaneously bleeding periodically. He says, not too worry. With only one blast she has not transformed to AML. I’ll come back to this also. He was able to diagnose mom’s yeast easily and told us what to get and how to take it. Bonnie (the NP we saw always) never told mom how much to use, or how often. I’m the one that told her to use the stuff twice daily until it’s gone. This guy, if the rash isn’t gone in two weeks, go see him. He gave us direction. Something we’ve not had in a year. He’s also questioning the original diagnosis. He said with 30% blasts in the blood the standard now is AML. Which brought back something Mooney said to me when he got the biopsy back. He said he didn’t get a very good sample because mom didn’t have many cells to grab. So did he make a diagnosis without enough information? Lanier was also upset that Bonnie had made a TIA diagnosis without a scan. He said based on what we told him about what happened he would have never made that diagnosis because with this disease there are too many things that could cause those symptoms. The the general feeling is that Mooney and Bonnie are diagnosing things without looking into them because they’re either lazy or just downright arrogant to think they know everything.

In comes my little sister. She worked in Oncology for years and had a daughter die of leukemia six years ago. I told her about the white counts and she said that only happens in two instances. 1, infection. 2, leukemia. We’re not supposed to see this guy again for four weeks because he wants to get mom’s chart and review everything from beginning to now. My sister said if that were her she’d be in that guy’s office next week getting another blood draw and checking for blasts again.

So, in light of what the herbalist said with the increased blood counts how can we not be at AML? But this is just bizarre. I’m not sure if I should push this guy to do another check next week. My little sister said if mom went AML that in four weeks she won’t be around to see this doctor again. So I’m not sure what to do. I do agree with my sister as far as getting another test next week. If there hadn’t been this huge change then I wouldn’t mind waiting, but this is too big of a change not to have an explanation for. She has no signs of infection at all. No swollen organs, nothing. The doctor was amazed at how well she had been doing. He also mentioned ATG and decitabine?

And to make matters worse, mom and I got into a big argument on the way home. I NEVER fight with her. But this one hit like a train coming. I’m tired.

Thanks so much for all of your support. Any suggestions on waiting for new blood counts or pushing for another next week would be gladly accepted. Also, he had them rerun the blood to verify the results were correct and they got the same results.

And right now, with Luke so sick, this feels so trivial. But I know it’s not.

Thanks everyone.

patti

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