Update: The Battle is Over

[brookelizabeth]

Hi Ty...I am happy to hear surgery went well and will be praying chemo does the rest of the job!

 

[Pea-n-Me]

I rarely post on this forum but having read this thread I have been moved by the kindness of "strangers" in giving practical information and emotional support to TyRy. It restores my faith in the goodness of human nature.

Thank you for a very up-lifting thread, although of course I am sad that the thread ( and this forum as a while) has to exist.

This is a really great forum.

A lot of the regular posters are people who've been through "stuff" themselves and know how how hard it is and how much it means when people care. It also helps us "Pay it forward" to be able to help others when so many helped us when we needed it.

I imagine some here consider it a "downer" and stay away. (Just look at the responses on the recent Farrah Fawcett thread.) It's easier not to think about the bad stuff when things are going well for you and your own family.

But eventually stuff happens to everyone, so it's good to know that there are people here who will offer information and a hug when you need it.

Thanks for posting.

 

[Mskanga]

If there's something I want after what I went through with my daughter ( other than a cure for cancer ) it's to have nobody go through it alone .

 

[TyRy]

Hello everyone,

Before I say anything else, I really do want to echo the sentiments Erics Mum - this really is a wonderful forum for support, kindnesss and even knowledge.

I kept meaning to get back on here and post, but haven't been dealing with things well and today was a blow. DMIL was great right after surgery, then had a minor hospital stay as she was bloating and having trouble breathing, then was ok again. The diagnosis was also changed to "poorly differentiated synovial sarcoma" (not sure if I spelled that right.) Even so she and DFIL were even at our house for a Father's Day celebration, although you could tell she was still somewhat out of breath. Later that week they did another scan and it now showed two spots on her lungs, which had not been there before. That now meant instead of radiation first like they planned they waated to start chemo.

Well, they did another scan on Monday...today we got the results. The cancer has spread like wildfire, and is now intruding on most of her organs and really strangeling her heart. The doctor still did her first chemo treatment and wants to do a double dose one next week. But if it doesn't show results we are not sure what will happen. He has prepared us that if the cancer continues on this path, her heart will give out soon and she'll have a massive heart attack.

Everyone is just devastated, but DMIL is still in somewhat good spirts. It's the fact she can't walk five feet without being out of breath that is getting her down. We're not sure what's going to happen next...I guess we wait a week and see what happens with the chemo. But when the doc starts telling you what to say to the ambulance that you'll be calling, it's just devastating.

Thanks all for letting me ramble!!

 

[Mackey Mouse]

I am so sorry to read this..spend your time loving her and being with her in any way you can. Cancer is horrific and sometimes it is slow growing and other times it spreads everywhere.. I hope that whatever does happen for her it is without pain. God bless you all.

 

[dougsmom98]

My thoughts and prayers are with your family.

 

[Flossbolna]

TyRy, I am so sorry! I wish your DMIL all the best and hope that the chemo is a success. I will keep your family in my thoughts and prayers!

 

[luvmarypoppins]

So sorry to hear this news. Praying that you all will know Gods peace and comfort in the days ahead. May all your time together be precious to you all.

My heart so goes out to your mil. My tumor was crushing my trachae and I could barely breathe, walk or swallow before they took it out. I am sure you have all the things that could help her like walker, commode, wheelchair, shower tub seat etc. Any or all of those things might make things a little easier for her ADL activities.

Blessings to you all.

 

[minniebeth]

I know that was not the news you wanted to hear, I'm so sorry....
I'm glad you DMIL is in somewhat good spirits, and when the shock of the news settles, you all can be too and enjoy your time surrounding her and loving her. You all will be in my thoughts and prayers...

 

[OKWMom]

I'm so very sorry. Prayers for you and your family.

 

[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...

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]

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

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.

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.

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.

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.