Update: The Battle is Over

[frdeb1999]

So very sorry. Your all in my continued thoughts and prayers.

[Pea-n-Me]

I'm sorry, TyRy. Keeping your family in my prayers.

[Mskanga]

TyRy ;
I am sorry to hear about the latest setback , but let's hope that the chemo works. From what I was told initially , radiation is not very responsive to some kinds of sarcoma , and this could be the case here , but chemo may work better.
Let's keep faith and hope for the best. You're in my prayers.

[TyRy]

Thank you all again and I'm going to reach out for your help once more in just a second...

Originally Posted by Mskanga

TyRy ;
I am sorry to hear about the latest setback , but let's hope that the chemo works. From what I was told initially , radiation is not very responsive to some kinds of sarcoma , and this could be the case here , but chemo may work better.
Let's keep faith and hope for the best. You're in my prayers.

You are right on the money...we were also told that it could be resistant to radiation. The other problem is the chemo drug that will work best, could damage her heart further so they did not want to use it.

We saw her this weekend and it's amazing how fast this thing seems to be happening and weakening her. A week ago she was saying she didn't need a wheelchair and now she is in it to go anywhere in her house or outside. She can't sit comfortably unless she is leaning forward and is having a lot of trouble sleeping...very understandable!

As I said she had her first treatment last week using Gemzar and this week she'll get that and Taxotere.

We are having a meeting with the oncologist at Univ of Chicago she has been seeing on Tuesday. DFIL has asked us to come along as he is just becoming drained and we may be able to disseminate the info better. Some of the questions we have are:
Why is she not a candidate for any type of clinical trial...if they would all damage her heart and her heart is going to give out anyway (according to him) shouldn't we at least try?

Since it has grown like wildfire but is only pushing on other organs and not invading would she be a candidate for a heart transplant?

Could they go back in and remove parts of the tumor again to give her some relief?

Does anyone have anything else that we should be asking at this point? We are, of course, now playing the "what if" game...what if we took her to Northwestern, or Mayo or Cleveland instead...you get it. I may still call a couple just to see what that say and if they could even see her.

Thank you all and hope you are having a wonderful and safe weekend.

Ty

[Flossbolna]

Ty, I am sorry, I can't help you with your questions, but I really hope that the chemo will work!! My father had chemo a few years ago, which worked, but damaged his heart. Fortunately not too bad and while the doctors claimed that the heart would not heal, he actually is much better now. And I recently read an article that said that new studies claim that the heart actually can heal - so far the general opinion seems that any damage to the heart is irreversible. But this might be changing. I wish your DMIL all the best and will keep you in my thoughts and prayers!

[Pea-n-Me]

I sent you a PM.

[TyRy]

Originally Posted by Flossbolna

Ty, I am sorry, I can't help you with your questions, but I really hope that the chemo will work!! My father had chemo a few years ago, which worked, but damaged his heart. Fortunately not too bad and while the doctors claimed that the heart would not heal, he actually is much better now. And I recently read an article that said that new studies claim that the heart actually can heal - so far the general opinion seems that any damage to the heart is irreversible. But this might be changing. I wish your DMIL all the best and will keep you in my thoughts and prayers!

Thanks Flossbolna and that's great to hear about your father. It's so nice to hear a good success story

Originally Posted by Pea-n-Me

I sent you a PM.

Thanks Pea-n-Me...you have one in return.

[Mskanga]

TyRy;

Unfortunately clinical trials have criterias and requirements , some of them more strict than others and yes while I know sometimes it's not fair , doctors cannot do much about it. It also depends on if the trials are open or not at the time , I know people whose children have not qualified for osteosarcoma trials because their children are too young ( in age ). If the one chemo they did not want to try on her because her heart would suffer was cisplatin I can tell you from experience that they are right on the money , that is a very strong one and they have to be very careful with it. Sometimes the treatment is worse than the disease itself.

As far as going in to remove parts of the tumor , most surgeons will not do that because they do not want to disturb the tumor for the fear that it will spread. My daughter's surgeon did not want to do an open biopsy , he did a needle biopsy. The only time they go in is if they anticipate to be able to resect the whole thing or if there's no major organs involved.

My suggestion to you is make a list of your questions no matter how insignificant you may think they are , and ask those questions the day you go in. At the same time it wouldn't hurt to consult with other facilities , Mayo clinic or even MD Anderson in Houston Texas.

Keeping you in my prayers .

[TyRy]

Hi all,

We accompanied DMIL to the doctor today. At first, he was very encouraged because her cough had stopped and her lungs did not refill with fluid. Then her blood readings came back and he was not at all happy with her liver or kidney functions. He is hoping that this is due to her being dehydrated (which I think some other level showed). So instead of her second chemo, they will be doing IV infusions for the next couple of days, trying to see if that gets her levels back up and then do the chemo at the end of this week. I'm really hoping that dehydration is all it is.

Originally Posted by Mskanga

TyRy;

Unfortunately clinical trials have criterias and requirements , some of them more strict than others and yes while I know sometimes it's not fair , doctors cannot do much about it. It also depends on if the trials are open or not at the time , I know people whose children have not qualified for osteosarcoma trials because their children are too young ( in age ). If the one chemo they did not want to try on her because her heart would suffer was cisplatin I can tell you from experience that they are right on the money , that is a very strong one and they have to be very careful with it. Sometimes the treatment is worse than the disease itself.

This was something the doc mentioned today, that they know they cannot cure this one, BUT they can try to control it and explained the whole risk to reward type thing.

Originally Posted by Mskanga

As far as going in to remove parts of the tumor , most surgeons will not do that because they do not want to disturb the tumor for the fear that it will spread. My daughter's surgeon did not want to do an open biopsy , he did a needle biopsy. The only time they go in is if they anticipate to be able to resect the whole thing or if there's no major organs involved.

His big reason for not going in again was two-fold. First he said that then there would be recovery time needed where they could not do the chemo, and if the chemo is giving some relief or working a bit, they do not want to stop that. Second was that he said even if they went back in and got 90%, that it grew so quickly between the first surgery and now, it would come right back.

Originally Posted by Mskanga

My suggestion to you is make a list of your questions no matter how insignificant you may think they are , and ask those questions the day you go in. At the same time it wouldn't hurt to consult with other facilities , Mayo clinic or even MD Anderson in Houston Texas.

That's what we did today...and we started to ask about some radical/experimental, but the doctor said we are not at that point yet. He wanted to wait to discuss them later when the time comes. He reminded us that most clinical trials/experiments and just that and a lot of the time they fail. He wants to give chemo a chance. And we are in the process of trying to get another consult..I think we are starting with Northwestern since it's right here.

Ty

[Mskanga]

TyRy;

If the chemo is working obviously that is what you want to try first but don't let anyone discourage you from clinical trials by telling you they fail many times , they also work many times. Please keep that in mind.

Take it one minute at a time , not even one day but one minute at a time. And also take the small victories like the stopping of the cough or the lungs not refilling with fluid and focus on that.

[TyRy]

As Mskanga said below, we are now taking it one minute at a time. We recived the news we were dreading....no more chemo. They did another blood test today and it showed her kidneys were bad and she had zero blood platelets (I did not hear from the doc directly but from DH.) It seems that her heart is just not functioning enough to support her organs.

They are going to keep her in the hospital another day or two, and then send her home to hospice. The doctor did not give us a timeline, and we are not sure if we should be rushing to take off work, or wait in case her strength wills her to stay with us longer.

Thank you all again for your support through this...I'm still stunned at the speed of this.

Ty

[Pea-n-Me]

I would probably take the time off.

[Flossbolna]

TyRy, I am so sorry to hear the bad news!

[Mskanga]

Ty ;
I am sorry to hear the news. I will tell you though that I would be taking the time off from work now. Recovering from chemo treatments is hard enough on someone who does not have heart problems , I cannot imagine on your MIL's case with the compromised heart and other organs.
My suggestion is if possible take the time off now. Keeping you in our prayers.

[Mackey Mouse]

I am so sorry to read this, but I agree with the others now is the time to be there and if that means taking time off.. I would do it.

Chemo is so difficult and while it sometimes takes out those cancer cells, it destroys good ones as well. I am there myself watching my husband and truly it is difficult.

Hugs to you and yours,
Marsha