› Forums › Caregiver Community › Stage 4 Update…Shooting Solution!
- This topic has 15 replies, 5 voices, and was last updated 12 years, 6 months ago by
FormerCaregiver.
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- October 28, 2011 at 10:21 pm
Hey all….thanks for all of the positive thoughts, feedback, and discussion from my earlier thread. So here's the latest….the mel is all over the place…brain mets, lung mets, liver mets, spleen mets, spinal bone mets (waiting to get path on fluid but we are hopeful), tumor in chest, and lymph nodes in left groin and abdomen are suspect. The good news…because I was so DILIGENT and refused to IGNORE what I knew wasn't right in my body, much of the mets is very small (1-2mm). From what I can tell, this is definitely a better place to start treatment from
Hey all….thanks for all of the positive thoughts, feedback, and discussion from my earlier thread. So here's the latest….the mel is all over the place…brain mets, lung mets, liver mets, spleen mets, spinal bone mets (waiting to get path on fluid but we are hopeful), tumor in chest, and lymph nodes in left groin and abdomen are suspect. The good news…because I was so DILIGENT and refused to IGNORE what I knew wasn't right in my body, much of the mets is very small (1-2mm). From what I can tell, this is definitely a better place to start treatment from than months down the road!
So….here's the plan….(fyi – I was just released from hospital 10/27)
10/28 – Met with WBR clinic near home…starting 10 treatments WBR today…they are even scheduling a special appt for me tomorrow (sat) to get my second dose in quickly
Once we complete the WBR, Gamma Knife will be employed at Hoag Memorial in Long Beach with Dr. Lindskey and Dr. Kuo. They anticipate having 2 -3 tumors left to attack post-WBR (remember most of the 8-11 brain mets are <2mm currently).
In the meantime, med onc is still working on the chemo solution which is still leaning toward Yervoy as soon as I recover from radiation. The doctors I am working with (Dr. S, Dr. J, and Dr. F) do not seem to be afraid to refer me out to a clinical trial they believe would be beneficial. The major concern we have briefly discussed is a lack of caregiver if I leave So Cal (except if I go to Indianapolis).
In answer to some personal questions which have been batted around about me….I am a 40-year old female with limited family support beyond my 74 year-old father in So Cal and a 55 year-old sister in Indy. I have spent my life being generally healthy and active, hiking 10-15 miles a week as recently as a few weeks before my July 2011 recurrence. The one theme I continue to hear from my team is about my ATTITUDE! I am going to kick the crap out of thisbastard! I have lived a wonderful life and will continue to do so for some time to come. I have been blessed with the people in my life, the experiences I have been afforded, and more than anything my own sense of personal awareness, responsibility and spirituality.
I appreciate all of you being out there in cyberland and I hope I can offer you similar hope as I progress in this journey!
Jacki
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- October 28, 2011 at 10:41 pm
Thatta girl Jacki, kick it's arse! Your being positive is infectious and that's a good thing. If I wasn't battling this disease myself I would offer you my home here in Chicagoland. Well, the home part is ok, it's the driving to/from the far away Dr. visits. Anyway….we are all here for you as much as you want us to be.
Karin
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- October 28, 2011 at 10:41 pm
Thatta girl Jacki, kick it's arse! Your being positive is infectious and that's a good thing. If I wasn't battling this disease myself I would offer you my home here in Chicagoland. Well, the home part is ok, it's the driving to/from the far away Dr. visits. Anyway….we are all here for you as much as you want us to be.
Karin
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- October 28, 2011 at 10:41 pm
Thatta girl Jacki, kick it's arse! Your being positive is infectious and that's a good thing. If I wasn't battling this disease myself I would offer you my home here in Chicagoland. Well, the home part is ok, it's the driving to/from the far away Dr. visits. Anyway….we are all here for you as much as you want us to be.
Karin
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- October 28, 2011 at 10:47 pm
Jacki,
Way to kick butt, girl!! I am pretty much in the same situation as you are, my caregiver is my 17-year-old daughter. As you can imagine, this is pretty limited care! The good thing is that she brings me lots of joy and a purpose to beat this stuff. I had my first brain surgery in LA when I lived in Las Vegas. I took a bus there and a bus back. I had the physical therapy people teach me everything I needed to take care of myself. I wouldn't recommend it, but I made it work. If I have to do a trial out of town, then there is a lot of arranging to be done, but I think it is possible. Anyway, keep up the great attitude, and keep us posted. You ARE going to beat this!
Cristy, Stage IV
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- October 28, 2011 at 10:47 pm
Jacki,
Way to kick butt, girl!! I am pretty much in the same situation as you are, my caregiver is my 17-year-old daughter. As you can imagine, this is pretty limited care! The good thing is that she brings me lots of joy and a purpose to beat this stuff. I had my first brain surgery in LA when I lived in Las Vegas. I took a bus there and a bus back. I had the physical therapy people teach me everything I needed to take care of myself. I wouldn't recommend it, but I made it work. If I have to do a trial out of town, then there is a lot of arranging to be done, but I think it is possible. Anyway, keep up the great attitude, and keep us posted. You ARE going to beat this!
Cristy, Stage IV
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- October 28, 2011 at 10:47 pm
Jacki,
Way to kick butt, girl!! I am pretty much in the same situation as you are, my caregiver is my 17-year-old daughter. As you can imagine, this is pretty limited care! The good thing is that she brings me lots of joy and a purpose to beat this stuff. I had my first brain surgery in LA when I lived in Las Vegas. I took a bus there and a bus back. I had the physical therapy people teach me everything I needed to take care of myself. I wouldn't recommend it, but I made it work. If I have to do a trial out of town, then there is a lot of arranging to be done, but I think it is possible. Anyway, keep up the great attitude, and keep us posted. You ARE going to beat this!
Cristy, Stage IV
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- October 28, 2011 at 11:55 pm
Jacki-
WoW, what a lot to take in. But with your attitude and otherwise good health you've got the best chance. Have you been tested genetically yet? While, your getting the WBR why don't you see about getting that done? They are getting such great results with the BRAF/MEK combo. You could manage getting yourself back and forth to the Angeles Clinic somehow. Prayers and Much Love.
Good Luck,
Mary
Stage 3
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- October 28, 2011 at 11:55 pm
Jacki-
WoW, what a lot to take in. But with your attitude and otherwise good health you've got the best chance. Have you been tested genetically yet? While, your getting the WBR why don't you see about getting that done? They are getting such great results with the BRAF/MEK combo. You could manage getting yourself back and forth to the Angeles Clinic somehow. Prayers and Much Love.
Good Luck,
Mary
Stage 3
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- October 28, 2011 at 11:55 pm
Jacki-
WoW, what a lot to take in. But with your attitude and otherwise good health you've got the best chance. Have you been tested genetically yet? While, your getting the WBR why don't you see about getting that done? They are getting such great results with the BRAF/MEK combo. You could manage getting yourself back and forth to the Angeles Clinic somehow. Prayers and Much Love.
Good Luck,
Mary
Stage 3
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- October 29, 2011 at 12:23 am
Jacki,
You have a kick butt attitude!
Having someone to help you can be an issue. I do have my husband but we have only lived her a year and he's it. You need to think some on this and think of friends that might help when needed. When they scheduled the SRS the person said to me that if I was taking valuim to remember that I couldn't drive. I didn't have the issue but they told me that they have people drive themeselves to radiation all of the time!
By cyber space we can help you though all of this that we can. I've talked to many on the board on the phone and sometimes it helps just to have someone listen and research for you.
You did listen to your body and responded quickly to your intuition.
Linda
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- October 29, 2011 at 12:23 am
Jacki,
You have a kick butt attitude!
Having someone to help you can be an issue. I do have my husband but we have only lived her a year and he's it. You need to think some on this and think of friends that might help when needed. When they scheduled the SRS the person said to me that if I was taking valuim to remember that I couldn't drive. I didn't have the issue but they told me that they have people drive themeselves to radiation all of the time!
By cyber space we can help you though all of this that we can. I've talked to many on the board on the phone and sometimes it helps just to have someone listen and research for you.
You did listen to your body and responded quickly to your intuition.
Linda
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- October 29, 2011 at 12:23 am
Jacki,
You have a kick butt attitude!
Having someone to help you can be an issue. I do have my husband but we have only lived her a year and he's it. You need to think some on this and think of friends that might help when needed. When they scheduled the SRS the person said to me that if I was taking valuim to remember that I couldn't drive. I didn't have the issue but they told me that they have people drive themeselves to radiation all of the time!
By cyber space we can help you though all of this that we can. I've talked to many on the board on the phone and sometimes it helps just to have someone listen and research for you.
You did listen to your body and responded quickly to your intuition.
Linda
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- October 29, 2011 at 5:36 am
Jacki, you certainly have the right attitude! It is really good that you now have a treatment plan in place. While all this is taking place, I encourage you to research all treatment options as some may work better than others for you. If you have any questions, don't hesitate to ask.
You have mentioned that the major concern is a lack of caregiver. I wonder if you have someone such as a friend or neighbour who you could ask for help if needed? They may not need to do much, but having someone to do the driving if you feel unwell is an important consideration.
You are in my thoughts and prayers.
Take care
Frank from Australia
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- October 29, 2011 at 5:36 am
Jacki, you certainly have the right attitude! It is really good that you now have a treatment plan in place. While all this is taking place, I encourage you to research all treatment options as some may work better than others for you. If you have any questions, don't hesitate to ask.
You have mentioned that the major concern is a lack of caregiver. I wonder if you have someone such as a friend or neighbour who you could ask for help if needed? They may not need to do much, but having someone to do the driving if you feel unwell is an important consideration.
You are in my thoughts and prayers.
Take care
Frank from Australia
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- October 29, 2011 at 5:36 am
Jacki, you certainly have the right attitude! It is really good that you now have a treatment plan in place. While all this is taking place, I encourage you to research all treatment options as some may work better than others for you. If you have any questions, don't hesitate to ask.
You have mentioned that the major concern is a lack of caregiver. I wonder if you have someone such as a friend or neighbour who you could ask for help if needed? They may not need to do much, but having someone to do the driving if you feel unwell is an important consideration.
You are in my thoughts and prayers.
Take care
Frank from Australia
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