› Forums › General Melanoma Community › ShariC Update
- This topic has 22 replies, 11 voices, and was last updated 12 years, 10 months ago by
Lisa13.
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- June 28, 2011 at 2:50 am
Hi All – Word from the Doc today via a PET scan after my latest chemo is that it isn't effective enough slowing down this mel. No more treatment is recommended. I don't have time to wait for Yervoy. The chemo was very hard on me and I didn't want to do it again anyway. I've got a 9 year old, and plenty of family and friends around me. I'm more peaceful than I thought I would be. Of course, my concern is for painfree.
Hi All – Word from the Doc today via a PET scan after my latest chemo is that it isn't effective enough slowing down this mel. No more treatment is recommended. I don't have time to wait for Yervoy. The chemo was very hard on me and I didn't want to do it again anyway. I've got a 9 year old, and plenty of family and friends around me. I'm more peaceful than I thought I would be. Of course, my concern is for painfree.
Thats it…for now. I'll try to keep you all up to date. I intend to manage this tumor load as long as possible and have some quality time left for journaling and perhaps a scrapbook. Life is good…truly is. Just sucks and is unfair sometimes. – Shari
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- June 28, 2011 at 3:25 am
Shari,
I am speechless. Your attitude is wonderful. Take dozens of pics of you and your son to put in that scrapbook. So glad you have such a wonderful support system around you.
Thank you for keeping us up to date, prayers are for you to be painfree and to enjoy your son for as long as possible.
Linda
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- June 28, 2011 at 3:25 am
Shari,
I am speechless. Your attitude is wonderful. Take dozens of pics of you and your son to put in that scrapbook. So glad you have such a wonderful support system around you.
Thank you for keeping us up to date, prayers are for you to be painfree and to enjoy your son for as long as possible.
Linda
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- June 28, 2011 at 4:13 am
Oh, Shari….
I wish I had words to describe my feelings right now. Don and I were right where you were: facing an ever-growing tumor burden and a "chemo or nothing" scenario. For some miraculous reason, his chemo is helping him. I wish there was a more fair outcome for you because it makes no sense that the same treatment would work for one and not the other.
God bless you that you are able to maintain such a positive outlook and are focusing on the truly important things. You are truly an inspiration to my husband and I and hope that if and/or when we reach this moment, we handle it with as much acceptance and grace.
My thoughts and prayers will be with you, Shari. I will pray that you can maintain a pain-free journey.
Michelle, wife of Don
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- June 28, 2011 at 4:13 am
Oh, Shari….
I wish I had words to describe my feelings right now. Don and I were right where you were: facing an ever-growing tumor burden and a "chemo or nothing" scenario. For some miraculous reason, his chemo is helping him. I wish there was a more fair outcome for you because it makes no sense that the same treatment would work for one and not the other.
God bless you that you are able to maintain such a positive outlook and are focusing on the truly important things. You are truly an inspiration to my husband and I and hope that if and/or when we reach this moment, we handle it with as much acceptance and grace.
My thoughts and prayers will be with you, Shari. I will pray that you can maintain a pain-free journey.
Michelle, wife of Don
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- June 28, 2011 at 6:28 am
Shari, I am deeply saddened to read this. Yes, life is very unfair at times and it is then
we realise that we really don't have much control over things at all.You are in my thoughts and prayers.
Frank from Australia
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- June 28, 2011 at 6:28 am
Shari, I am deeply saddened to read this. Yes, life is very unfair at times and it is then
we realise that we really don't have much control over things at all.You are in my thoughts and prayers.
Frank from Australia
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- June 28, 2011 at 12:31 pm
Hi Shari,
I watch Eric and others and all I can say is no one knows what their future holds. Just like Eric amazes me, YOU amaze me! Even if, away from this board you have total meltdowns, the grace and peace you bring here is a gift. And because there is a real sense of peace, somehow I doubt you've had very many times of weeping and wailing and gnashing your teeth. But if and when those times come, let them come.
I remind people with children who are in a similar situation, that you're giving your child lessons galore, lessons you don't even realize you're giving…lessons they don't realize they're learning. The rest of your child's days, he'll remember how you faced life and death, he'll remember and look to your example. This is a teaching moment you never asked for but my hat is off to you for making the most of it. So let him see the tears and the wrestling if possible as that's part of it. Please don't sugar coat it or he'll walk away with unreal expectations. But keep showing him bravery in the face of everything you're facing and let him see you facing this head-on.
You're modeling for us too. For we all walk the same road. No matter how our days ultimately end, they end.
Thank you. Prayers for continued peace, love with your child and your God, and a painfree journey. Lord, in Your mercy, make it so. Amen and Amen.
Grace and peace,
Carol
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- June 28, 2011 at 12:31 pm
Hi Shari,
I watch Eric and others and all I can say is no one knows what their future holds. Just like Eric amazes me, YOU amaze me! Even if, away from this board you have total meltdowns, the grace and peace you bring here is a gift. And because there is a real sense of peace, somehow I doubt you've had very many times of weeping and wailing and gnashing your teeth. But if and when those times come, let them come.
I remind people with children who are in a similar situation, that you're giving your child lessons galore, lessons you don't even realize you're giving…lessons they don't realize they're learning. The rest of your child's days, he'll remember how you faced life and death, he'll remember and look to your example. This is a teaching moment you never asked for but my hat is off to you for making the most of it. So let him see the tears and the wrestling if possible as that's part of it. Please don't sugar coat it or he'll walk away with unreal expectations. But keep showing him bravery in the face of everything you're facing and let him see you facing this head-on.
You're modeling for us too. For we all walk the same road. No matter how our days ultimately end, they end.
Thank you. Prayers for continued peace, love with your child and your God, and a painfree journey. Lord, in Your mercy, make it so. Amen and Amen.
Grace and peace,
Carol
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- June 28, 2011 at 1:19 pm
Gosh Shari, I am so sorry to read this.
Have you considered a trial like E7080?
http://clinicaltrials.gov/ct2/results?term=e7080+melanoma&recr=Open&no_unk=Y
And have you been tested for the BRAF mutation? These may both buy you some more time until another avenue opens up.
Michael
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- June 28, 2011 at 1:19 pm
Gosh Shari, I am so sorry to read this.
Have you considered a trial like E7080?
http://clinicaltrials.gov/ct2/results?term=e7080+melanoma&recr=Open&no_unk=Y
And have you been tested for the BRAF mutation? These may both buy you some more time until another avenue opens up.
Michael
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- June 28, 2011 at 1:58 pm
Shari – I am so sorry that they can't find something to help you. Take care of yourself, and take those pain meds. Jim's mel went to the stomach area also…He was in pain, and they even did surgery to resect one portion of the intestine, but he had so many more, but it did buy us a little time at the VA Hospital…He was optomistic up to the end. Your optomism reminds me of him. It is beautiful. Thinking of you and wishing you pain-free and quality time with loving family and friends.
Take Care,
Sherron, wife to Jim FOREVER
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- June 28, 2011 at 3:24 pm
Shari,
i think i understand the need or not need of saying to the doctors i can't take any more of your toxic brew for now…perhaps some surgery just to reduce the tumor load and/or radiation to shrink them? i just hate to think you are not given enough options…and this fatalistic outlook concerns me…i mean, it is what it is, but there are still options left on the table…correct me if i am wrong, but do you choose to do nothing?
i have heard of rare instances where someone, even with a large tumor load, had their mel just disappear…without doing anything…Ok, it was only one instance…
i don't know…just laugh and hike and fish and play with your son…enjoy your quality time…
i still pray for a miracle for us…i feel you and i have similar trajectories in regards to mel
boots
As I arise this day, I rise out of the realm of hopelessness and impossibility, I rise into the heights of all possibility.
As I am mindfully present in this moment , I can see the availability of unlimited options everywhere I look.
There is a new way, where I have not previously seen one.
In Your truth, there are unlimited opportunities opening to me!HO!
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- June 28, 2011 at 4:41 pm
Shari, you are an incredible role model for your beautiful son. Your strength reaches out to all. I pray for your continued resolve, courage, and peace. Please keep us updated when you can. A lot of people have been touched by your journey and are pulling for you.
Hope
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- June 28, 2011 at 4:41 pm
Shari, you are an incredible role model for your beautiful son. Your strength reaches out to all. I pray for your continued resolve, courage, and peace. Please keep us updated when you can. A lot of people have been touched by your journey and are pulling for you.
Hope
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- June 28, 2011 at 3:24 pm
Shari,
i think i understand the need or not need of saying to the doctors i can't take any more of your toxic brew for now…perhaps some surgery just to reduce the tumor load and/or radiation to shrink them? i just hate to think you are not given enough options…and this fatalistic outlook concerns me…i mean, it is what it is, but there are still options left on the table…correct me if i am wrong, but do you choose to do nothing?
i have heard of rare instances where someone, even with a large tumor load, had their mel just disappear…without doing anything…Ok, it was only one instance…
i don't know…just laugh and hike and fish and play with your son…enjoy your quality time…
i still pray for a miracle for us…i feel you and i have similar trajectories in regards to mel
boots
As I arise this day, I rise out of the realm of hopelessness and impossibility, I rise into the heights of all possibility.
As I am mindfully present in this moment , I can see the availability of unlimited options everywhere I look.
There is a new way, where I have not previously seen one.
In Your truth, there are unlimited opportunities opening to me!HO!
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- June 28, 2011 at 1:58 pm
Shari – I am so sorry that they can't find something to help you. Take care of yourself, and take those pain meds. Jim's mel went to the stomach area also…He was in pain, and they even did surgery to resect one portion of the intestine, but he had so many more, but it did buy us a little time at the VA Hospital…He was optomistic up to the end. Your optomism reminds me of him. It is beautiful. Thinking of you and wishing you pain-free and quality time with loving family and friends.
Take Care,
Sherron, wife to Jim FOREVER
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- June 28, 2011 at 6:21 pm
Shari, I'm so sorry to hear this. My prayers go to you and your family. Rich
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- June 28, 2011 at 7:23 pm
Hi Shari,
I'm so very sorry that you and your family are going through this. I know before you started chemo, you talked about "feeling at peace" and I wondered at that moment if you gave up or assumed the worse was going to happen and was mentally preparing for it. I can't imagine there is nothing they can do for you or perhaps you no longer have the strength.
I'm praying for a miracle for you Shari (and it is possible) and I pray that you don't give up. If there is nothing they can do for you, would you consider mistletoe injections? I hate to get all holistic on you, but there are virtually no side effects and you have nothing to lose……..
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- June 28, 2011 at 7:23 pm
Hi Shari,
I'm so very sorry that you and your family are going through this. I know before you started chemo, you talked about "feeling at peace" and I wondered at that moment if you gave up or assumed the worse was going to happen and was mentally preparing for it. I can't imagine there is nothing they can do for you or perhaps you no longer have the strength.
I'm praying for a miracle for you Shari (and it is possible) and I pray that you don't give up. If there is nothing they can do for you, would you consider mistletoe injections? I hate to get all holistic on you, but there are virtually no side effects and you have nothing to lose……..
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