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Advice please

JazzyAngel
Posts: 5
Joined: Jan 2013

Hello. I am new here but have been looking for a forum where I could ask for advise to help my mother. She has stage 4 lung cancer it had spread to her brain but after 2 weeks of radiation her scan is clean. She was on Tarceva for a year and a half and it shrank the tumors but we have recentally found out it is not working anymore. Just Wednesday she had her first chemo session with Taxol and Carboplatin. She is not tolerating it at all well and my biggest concern is her eating. She vomits alot and I'm trying desperately to get her to keep trying. She was 120 before she got sick dropped doen to 85 during radiation when she was also very ill and ended up in the hospital afrter with a IV for 2 weeks. She got back up to 100 on the Tarceva but now has lost all the weight she had gained and maybe even more. Can anyone give me any advise on how to help her eat she doesn't even seem hungry anymore. I have 2 cartons of ensure but she doesn't like them and I have to work hard to get her to drink even a little. Any ideas would be greatly appreciated.

djs123
Posts: 102
Joined: Jan 2012

I would suggest you go to the Inspire.com website and post your question.  You will definitely get some good advice there.

Good luck

dennycee
Posts: 657
Joined: Mar 2011

There are two that I am aware of.  The first is Marinol.  It should help with the nausea and the appetite.  The second would be Megace, about which I know little except it can take a couple weeks to become fully effective.  Okay, third option is medical marijuana if its legal where you are at.  in the mean time try a little ginger ale or ginger tea to help with the nausea.  

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Everything you saying brings memories of my husband`s agoni with this meds: tarceva,radiation,quimo nausea,weakness,the worst is the weight, I remember cookingt and giving him everything I can think of and nothing was helping and he got to the end suffering, thank to God he is gone to heaven because this evil cancer especialy the meds, torture my dear husband and I don`t want for anybody to suffer like  this.....ask you dear mother if she wants to continue with the tredments if not let her live de rest of her life in  peace. I am sorry that I am so pessimistic, but it was hell for him to prolong his life like this. Now the worst memories and nightmares I have are the 2 years when he was taking all this crap.

I am sorry if some of you don`t agree with me!

love.

Rosi

 

JazzyAngel
Posts: 5
Joined: Jan 2013

Thank you for the suggestions I will talk to my doctor about the meds. We are not in a legal marijuana state but i will definately try the ginger ale and ginger tea.

Rosi thank you for replying and sharing your thoughts. When the doctor told us the Tarceva wasn't working anymore it was the first time I realized that this wasn't something that was going to be cured that this is the thing that will take my mother's life and all we can do is try to keep her with us as long as we can. I hope that my mother is fighting for herself and not because she knows how much me, my dad and my brother will suffer when we loose her but that is a hard conversation to have. One of the things that hurts the  most is that when she was taking the radition she said one of the things she wanted to do before the end was to simply take our 15 year old dog for a walk something she couldn't do because she was a 75 pound chow mix who pulled on the leash but we lost her back in september so she will never be able to do that. I have to wonder how many other lasts she won't be able to have because the side effects of treatment won't let her. Sorry I know i'm rambling a but but in my family i'm the strong one and I can't say or think these things in frount of htem so its spilling out a bit.

JazzyAngel
Posts: 5
Joined: Jan 2013

When we went to see the doctor I asked about Megace as you suggested and he prescribed it. It has really helped alot she is eating better and her 2nd treatment was much easier on her. She is also drinking Carnation instant breakfast drinks which if mixed with whole milk is as nutrious as the ensure so hopefully we'll be able to get more weight on her. *hugs*

jalu
Posts: 58
Joined: Jan 2013

I'm so sorry to read of your cries for help.  My Mother is also suffering from lung cancer that has metastasized to the brain.  They are recommending Whole Brain Radiation Therapy for her which scares me.  Too much of what I have read about WBRT is that it is the beginning of a long road of suffering to certain death.  The HIGH RISK of worsening side effects, the related drugs, etc.  After WBRT then they would be recommending chemo.  These treatments ARE NOT A CURE.  They only buy time.  Rosi makes a point below -- they buy a time of suffering and misery.  

I'm sorry I don't have any advice for you -- I hear your cries.  I know it is hard to watch your Mother suffer.  Realize that your story is invaluable to others out there.  It so clearly defines the two approaches to dealing with brain cancer and certain death:

1)  Fight it!  Your Mother has chosen to fight it and she is a trooper.  What a strong lady she is.  Based on your hindsight -- is it worth it?

and

2)  Live life -- as best as you can -- until the end.  Succumb to the disease -- you will die under either approach.  There is certain to be a level of suffering under this approach as well.  On hindsight, Rosi wishes she had taken this approach.  I HATE hindsight-- going all the way back to the day they found my Mother's lung cancer, I wish we had done things differently.

On February 26th we go back to Mother's oncologist to "re-evaluate" going forward with WBRT.  It is not a cure, so I'm having a hard time "going there".  As long as she is up everyday and active -- I can't put her "down" with WBRT.  Ultimately it will be her choice, and she trusts her doctors.  They are recommending WBRT so that is what she will do!  The doctor says, "she will do fine with WBRT."  No mention of any of the facts:  it is not a cure, it only buys time, side effects are harsh, the drugs are harsh, etc.  And then they will want chemo?  JEEZ!

Thank you JazzyAngel -- you and your Mother are in my prayers.  

P.S. My Mother is a little 86 year old, 90 pound lady.  I do so understand your concerns with weight loss.  That alone can kill and it is hard to watch.  I cannot imagine Mother losing any more weight.  We've been the Ensure route too -- we couldn't get her to indulge.  WHATEVER you can get her to eat is better than nothing -- chocolate -- ice cream -- corn dogs -- why not?

Good luck and keep us posted.

 

 

 

 

JazzyAngel
Posts: 5
Joined: Jan 2013

I can't tell you how much prayers help. Its like knowing someone else cares. My mom trusts her doctors as well and it helps to know he actually does care. Every time we got a good report he was delighted and when the bad news came he was almost tearful and he was also very honest about the chemo not being a cure and that the side effects where bad making it clear that he would be there no matter which choice she made. I've found that she can eat honey grams cereal pretty well and the docs are gonna adjust her meds more next time so hopefully it will be better. I will be praying for your mother andhope that if she does decide on the radiation that she has a easy time with it.

jalu
Posts: 58
Joined: Jan 2013

that you have found something your Mother will eat.  Your doctor too, sounds compassionate and realistic.  Our doctor offers the tools he has to fight the cancer, but has NOT been realistic with us related to the side effects from the treatments.  He tries to be encouraging.  He is ready to schedule WBRT as soon as we are ready, saying, "she will do fine".  Hmmm...

When my Mother had targeted radiation to about 5 spots in the brain in September 2012, it was hard!  The steriods -- the anti-convulsants -- the fatigue were awful.  SLOWLY, she recovered.  Maybe by December 2012 she was back to being independent.  BUT, it was a long time.  Of course, the January 2013 MRI showed more spots.  

Hang in there -- take it SLOW.  Recovery will be slow -- day by day -- over the course of months, but hopefully little-by-little she will improve and begin to see the BENEFIT of the treatments and the fight -- rather than the immediate effects which are so awful.  Ultimately, the benefits of treatment will give you more time -- perhaps years (according to our oncologist).

You are moving forward and I will be watching your fight.  You've done the right thing for your Mother and she is lucky to have you with her in the fight.  We are hanging in "limbo" -- hesitatnt to take that plunge -- at least for right now.  I'll keep you posted.  

Thank you again JazzyAngel for sharing!  Your Mother (and family) are in my prayers.  

 

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Hello Jalu, and jazzy angel,  I don`t know way I am back in this forum, it is almost 2 years since my husband of 40 years went to be with our Lord, maybe because I feell closed to everybody in this forum. Every  med. you mention Wayne try,why? because he trusted the oncologist, b/c he was the best, the nicest and so positive mama mia! everytime the meds or quimo,radiation, gama nife surgery, tarceva,mengar o something like that and all the rest to keep you stomack well and for depression and all the side effect, my husband was taking b/c the dr. told him that was going to keep him well, and the devil cancer never went away, it got worts.  all this suffering as a care giver made me strong and my daugther and her husband and grandbaby(about 2 year old) we may memories, and took many pictures, because we wanted for the little girl to remember granddaddy. tell you love ones how much you love them,pray toguether and trust God, He can do it, with out God nothing is possible.  and keep yourself healthy. love you.

Rosi 

Rosi's picture
Rosi
Posts: 69
Joined: Dec 2009

Hello Jalu, and jazzy angel,  I don`t know way I am back in this forum, it is almost 2 years since my husband of 40 years went to be with our Lord, maybe because I feell closed to everybody in this forum. Every  med. you mention Wayne try,why? because he trusted the oncologist, b/c he was the best, the nicest and so positive mama mia! everytime the meds or quimo,radiation, gama nife surgery, tarceva,mengar o something like that and all the rest to keep you stomack well and for depression and all the side effect, my husband was taking b/c the dr. told him that was going to keep him well, and the devil cancer never went away, it got worts.  all this suffering as a care giver made me strong and my daugther and her husband and grandbaby(about 2 year old) we may memories, and took many pictures, because we wanted for the little girl to remember granddaddy. tell you love ones how much you love them,pray toguether and trust God, He can do it, with out God nothing is possible.  and keep yourself healthy. love you.

Rosi 

Xiaowang
Posts: 17
Joined: Feb 2013

Hi,

I am sorry for your mother.

I did not want to eat after surgery. But I forced myself to drink milk, V8 and Ensure. Also some rice soup with pickles and spice food. Try to eat little bit all day long. It may work. Good luck.

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