Prayer Request - UPDATE!!!

rozaroo

mixleader said:

Hi, Nicole. I am in awe of your positive attitude. I think most of us can relate to how scared and frustrated you are, but your fighting spirit is a major plus. I am hoping and praying that you do just fine and you are obviously battling the beast to a major degree. God bless.


Roger

Nicole
Love your attitude & plan of action! It sound's like you have a great team behind you & I
am sure you will do fantastic. Thank you for explaining your scan result's so perfectly.
I wish you my very best on your new treatment!
Hugg's Roz

delnative

Hondo said:

Positive attitude is everything
A good positive attitude is the best way to start fighting this stuff, we will continue to keep you in our prayers and thoughts.

Hondo

You go, girl
By going the clinical trial route, you not only have the potential of helping yourself but helping other cancer warriors as well. That's a good thing.
Keep fighting the good fight.

--Jim in Delaware

sweetblood22

delnative said:

You go, girl
By going the clinical trial route, you not only have the potential of helping yourself but helping other cancer warriors as well. That's a good thing.
Keep fighting the good fight.

--Jim in Delaware

Attitude, attitude, attitude.....
Is everything! Still praying for you, love.

Sweet

skipper85

nkimber said:

Well, I spent the day yesterday going to visit a new oncologist at a different hospital, then running around trying to get the print-outs of my results to drop back off with him... all while trying my best not to open the envelope so that I could wait for my other doctor to deliver the lews late yesterday afternoon! It was a very long day to say the least.

So, here's the news:

1. The tumor in my throat shrank about 20%!!! This is great, especially considering the cancer is so slow-moving that it's really tough to target with chemo. The report said "intervally decreased showing good response". The uptake was a bit less too.

2. The older, smaller tumors had very little uptake and shrank "intervally showing excellent response".

3. I have new, small tumors... boooo. So, needless to say the doctors are very confused. The chemo is working, but still allowing new stuff to show-up???? So strange. The tumors are very small (biggest is about 1cm, maybe less), and just under my skin. No... you can't see them like little lumps on my body! You still have to feel for them, but they're easily detectable.

The decision from the doctors is to stop the chemo I'm on right now (cisplatin, adriamiacin, cyclophosphamede), and move on to a clinical trial. I was presented with two, by the two different hospitals. One is phase I, and the other Phase II. I am going with Phase II and the drug is called Dasatinib. It is currently used for leukemia patients, so the trial isn't to approve the drug, but to approve the drug for use in salivary gland cancers. It's kind of cool... I'll be taking it orally, two times a day.

As for how I'm feeling about all of this, I'm really quite scared at the moment. It is very tough to be in unknown territory for so many doctors, but I need to see it as being a pioneer! I am very comfortable with my new oncologist, and he even called me on his way home from work last night to make sure I was comfortable wiht the plan and review the results that I received earlier that afternoon. In the meantime, my ENT is going to do some digging and look into chemo sensitivity testing (where they send away a piece of your tumor, grow it in a dish, and see if they can figure out how to kill it), and also test it for estrogen receptors. Thanks to Elizabeth I mentioned that her tumor of the same tpe grew during her pregnancies, so they thought it might be a good idea to test that too. They will be throwing in some other tests for good measure. So, hopefully I get some promising news in the next few days about all of his digging. I'm also hoping that the chemo sensitivity testing is at least partially covered by my insurance, and not too expensive. I heard some pretty big numbers depending on who you ask, but I think it is really where things are headed as far as improving cancer treatment and research.

Thank you again for all of your prayers... It was not exactly the perfect news that I prayed and hoped for, but it's a start. I am trying my best not to be scared, and to trust in God that I will live a long, amazing, and healthy life... that all of us will.

I will keep you all updated as the trial gets kicked-off... probably starting a couple weeks from now. In the meantime, while I'm free from chemo-induced side-effects, I'm embarking on a 7-day raw food cleanse! It will be tough, so I might need to have some soup to get me through it... Maybe it will be a 90% raw food cleanse I'll let you know how it goes... feel free to share any fun recipes you might have!

Lots of prayers going out to all of you each and every day.

Nicole

You're Doing the Right Thing

First of all mixed results aren't all bad. Your doctors have part of the puzzle solved but some pieces are missing.

I'm glad you decided on Phase II and not Phase I. My daughter works in clinical trials and she told me to only try Phase II and higher. I have a friend whose sister was in a clinical trial for I think Herceptin. Her sister is great now (some years later) but my friend got breast cancer (not hereditary). Guess what drug they had made the standard at that time - the same clinical trial drug her sister was on.

So yes you'll will be a pioneer possibly saving lots of lives including your own. Don't be scared be mad at this cancer. Make sure it knows you're not going to give into it. Visualize the tumor cells being killed off. The mind is a powerful tool.

I wish you all the best. You're in my prayers.

((Hugs))

Skipper

kingcole42005

nkimber said:

Well, I spent the day yesterday going to visit a new oncologist at a different hospital, then running around trying to get the print-outs of my results to drop back off with him... all while trying my best not to open the envelope so that I could wait for my other doctor to deliver the lews late yesterday afternoon! It was a very long day to say the least.

So, here's the news:

1. The tumor in my throat shrank about 20%!!! This is great, especially considering the cancer is so slow-moving that it's really tough to target with chemo. The report said "intervally decreased showing good response". The uptake was a bit less too.

2. The older, smaller tumors had very little uptake and shrank "intervally showing excellent response".

3. I have new, small tumors... boooo. So, needless to say the doctors are very confused. The chemo is working, but still allowing new stuff to show-up???? So strange. The tumors are very small (biggest is about 1cm, maybe less), and just under my skin. No... you can't see them like little lumps on my body! You still have to feel for them, but they're easily detectable.

The decision from the doctors is to stop the chemo I'm on right now (cisplatin, adriamiacin, cyclophosphamede), and move on to a clinical trial. I was presented with two, by the two different hospitals. One is phase I, and the other Phase II. I am going with Phase II and the drug is called Dasatinib. It is currently used for leukemia patients, so the trial isn't to approve the drug, but to approve the drug for use in salivary gland cancers. It's kind of cool... I'll be taking it orally, two times a day.

As for how I'm feeling about all of this, I'm really quite scared at the moment. It is very tough to be in unknown territory for so many doctors, but I need to see it as being a pioneer! I am very comfortable with my new oncologist, and he even called me on his way home from work last night to make sure I was comfortable wiht the plan and review the results that I received earlier that afternoon. In the meantime, my ENT is going to do some digging and look into chemo sensitivity testing (where they send away a piece of your tumor, grow it in a dish, and see if they can figure out how to kill it), and also test it for estrogen receptors. Thanks to Elizabeth I mentioned that her tumor of the same tpe grew during her pregnancies, so they thought it might be a good idea to test that too. They will be throwing in some other tests for good measure. So, hopefully I get some promising news in the next few days about all of his digging. I'm also hoping that the chemo sensitivity testing is at least partially covered by my insurance, and not too expensive. I heard some pretty big numbers depending on who you ask, but I think it is really where things are headed as far as improving cancer treatment and research.

Thank you again for all of your prayers... It was not exactly the perfect news that I prayed and hoped for, but it's a start. I am trying my best not to be scared, and to trust in God that I will live a long, amazing, and healthy life... that all of us will.

I will keep you all updated as the trial gets kicked-off... probably starting a couple weeks from now. In the meantime, while I'm free from chemo-induced side-effects, I'm embarking on a 7-day raw food cleanse! It will be tough, so I might need to have some soup to get me through it... Maybe it will be a 90% raw food cleanse I'll let you know how it goes... feel free to share any fun recipes you might have!

Lots of prayers going out to all of you each and every day.

Nicole

I'm sorry I didn't see your post earlier or I would have sent up
I'm sorry I didn't see your post earlier or I would have sent up thousands of prayers for you. I will tonight, I will send prayers and positive thoughts your way. Your gonna beat this cancer Nicole. Your positive attitude and the light that comes from your posts tells me that you will! Shelly

nkimber

kingcole42005 said:

I'm sorry I didn't see your post earlier or I would have sent up
I'm sorry I didn't see your post earlier or I would have sent up thousands of prayers for you. I will tonight, I will send prayers and positive thoughts your way. Your gonna beat this cancer Nicole. Your positive attitude and the light that comes from your posts tells me that you will! Shelly

Overwhelmed...
I am utterly overwhelmed by the kindness and thoughtfulness you have all displayed. I cannot tell you how powerful your words are to my mindset, and my health. If only I could have each of you on call every time I started to get scared, I would be living a worry-free life! Just to let you know, when I do start to get scared, I go back to this discussion and read through all of your kind words. You instantly lift me up and make me feel like the fighter I am. It is so uplifting to know that there are so many incredible people out there.

Lots of love and prayers to all of you...

Nicole

stevenl

nkimber said:

Overwhelmed...
I am utterly overwhelmed by the kindness and thoughtfulness you have all displayed. I cannot tell you how powerful your words are to my mindset, and my health. If only I could have each of you on call every time I started to get scared, I would be living a worry-free life! Just to let you know, when I do start to get scared, I go back to this discussion and read through all of your kind words. You instantly lift me up and make me feel like the fighter I am. It is so uplifting to know that there are so many incredible people out there.

Lots of love and prayers to all of you...

Nicole

Sorry
Hi Nicole,

Sorry I haven't posted here earlier. Remember that you do have us on call every time you get scared, just post and we will be here to help. Good luck with the trial and I commend you for doing it!

Best,
Steve

Kent Cass

nkimber said:

Well, I spent the day yesterday going to visit a new oncologist at a different hospital, then running around trying to get the print-outs of my results to drop back off with him... all while trying my best not to open the envelope so that I could wait for my other doctor to deliver the lews late yesterday afternoon! It was a very long day to say the least.

So, here's the news:

1. The tumor in my throat shrank about 20%!!! This is great, especially considering the cancer is so slow-moving that it's really tough to target with chemo. The report said "intervally decreased showing good response". The uptake was a bit less too.

2. The older, smaller tumors had very little uptake and shrank "intervally showing excellent response".

3. I have new, small tumors... boooo. So, needless to say the doctors are very confused. The chemo is working, but still allowing new stuff to show-up???? So strange. The tumors are very small (biggest is about 1cm, maybe less), and just under my skin. No... you can't see them like little lumps on my body! You still have to feel for them, but they're easily detectable.

The decision from the doctors is to stop the chemo I'm on right now (cisplatin, adriamiacin, cyclophosphamede), and move on to a clinical trial. I was presented with two, by the two different hospitals. One is phase I, and the other Phase II. I am going with Phase II and the drug is called Dasatinib. It is currently used for leukemia patients, so the trial isn't to approve the drug, but to approve the drug for use in salivary gland cancers. It's kind of cool... I'll be taking it orally, two times a day.

As for how I'm feeling about all of this, I'm really quite scared at the moment. It is very tough to be in unknown territory for so many doctors, but I need to see it as being a pioneer! I am very comfortable with my new oncologist, and he even called me on his way home from work last night to make sure I was comfortable wiht the plan and review the results that I received earlier that afternoon. In the meantime, my ENT is going to do some digging and look into chemo sensitivity testing (where they send away a piece of your tumor, grow it in a dish, and see if they can figure out how to kill it), and also test it for estrogen receptors. Thanks to Elizabeth I mentioned that her tumor of the same tpe grew during her pregnancies, so they thought it might be a good idea to test that too. They will be throwing in some other tests for good measure. So, hopefully I get some promising news in the next few days about all of his digging. I'm also hoping that the chemo sensitivity testing is at least partially covered by my insurance, and not too expensive. I heard some pretty big numbers depending on who you ask, but I think it is really where things are headed as far as improving cancer treatment and research.

Thank you again for all of your prayers... It was not exactly the perfect news that I prayed and hoped for, but it's a start. I am trying my best not to be scared, and to trust in God that I will live a long, amazing, and healthy life... that all of us will.

I will keep you all updated as the trial gets kicked-off... probably starting a couple weeks from now. In the meantime, while I'm free from chemo-induced side-effects, I'm embarking on a 7-day raw food cleanse! It will be tough, so I might need to have some soup to get me through it... Maybe it will be a 90% raw food cleanse I'll let you know how it goes... feel free to share any fun recipes you might have!

Lots of prayers going out to all of you each and every day.

Nicole

Nicole
Like Steve, I apologize for being absent.
Glad for your good news, and sorry for the not-so good. Seems you've got quite the fight going-on. A trial? That's cutting-edge, girl, and kinda exciting. Hope you can think of it that way. Still, it hurts to hear your not-so good news.

Yes, it does seem strange that new places show while getting the chemo. And even w/Cisplatin? Hmmmm. I trust your care is at a major medical center(s)? If not, perhaps a visit to one is in order. As you describe your test results- just about time to get very aggressive with this thing. This is C, Nicole, and there is only one way to wage battle: error on the side of the aggressive. We're in 2011, now, and it seems to me that your Drs. should have a handle on this thing.

Going forward, Nicole- you are required to keep us informed! Yes, most certainly. Would suggest a new thread when the trial starts. Prayers are with you, by one and all, here. Know it, and

Believe

kcass

Kimba1505

skipper85 said:

You're Doing the Right Thing

First of all mixed results aren't all bad. Your doctors have part of the puzzle solved but some pieces are missing.

I'm glad you decided on Phase II and not Phase I. My daughter works in clinical trials and she told me to only try Phase II and higher. I have a friend whose sister was in a clinical trial for I think Herceptin. Her sister is great now (some years later) but my friend got breast cancer (not hereditary). Guess what drug they had made the standard at that time - the same clinical trial drug her sister was on.

So yes you'll will be a pioneer possibly saving lots of lives including your own. Don't be scared be mad at this cancer. Make sure it knows you're not going to give into it. Visualize the tumor cells being killed off. The mind is a powerful tool.

I wish you all the best. You're in my prayers.

((Hugs))

Skipper

The mind-body connection.
We often talk about attitude on these boards and what a differenc it makes. I know it was huge in the battle I fought with Mark. But we don't talk a lot about what Skipper just mentioned at that is the mind visualizing the warfare against cancer. The body is the battle ground and the the fight is between cancer and chemicals. We do not know the power of the mind, but visualizing, in whatever creative design, the chemo drugs coming up against the cancer cells and taking them down seems empowering.
Nicole, I must agree with everyone here, your posts read with a tremendous strength in attitude, definitely in your favor. As far as mixed results, build on what is in the plus column and fight to eliminate what in is the minus column.
Stay the course.
Kim

bobellal

Prayers
Hi Nicole,

You have my prayers, indeed. I'm a four-time cancer survivor (stage four bone lymphoma, diagnosed '91). It was a rough ride for my family and me but there is light at the end of the tunnel.

Something you might want to try to calm your mind and body: Qigong, Chinese mind/body exercises/meditations. I used qigong during my "fun and games" and it helped me immensely, not only to relieve stress but to take the body out of fight/flight syndrome, which pumps adrenal hormones into the system that interfere with healing. The deep abdominal breathing is the core or the practice, not only calming the mind and moving the body into the parasympathetic nervous system, but providing more oxygen to the blood. It also pumps the lymphatic system, a vital part of the immune system. Most of all, daily practice reinforces the will and empowers one to take part in the healing process.

Godspeed!

Bob Ellal

Vivi C

Praying for you!
Viv

Praying for you!
Viv

Hondo

bobellal said:

Prayers
Hi Nicole,

You have my prayers, indeed. I'm a four-time cancer survivor (stage four bone lymphoma, diagnosed '91). It was a rough ride for my family and me but there is light at the end of the tunnel.

Something you might want to try to calm your mind and body: Qigong, Chinese mind/body exercises/meditations. I used qigong during my "fun and games" and it helped me immensely, not only to relieve stress but to take the body out of fight/flight syndrome, which pumps adrenal hormones into the system that interfere with healing. The deep abdominal breathing is the core or the practice, not only calming the mind and moving the body into the parasympathetic nervous system, but providing more oxygen to the blood. It also pumps the lymphatic system, a vital part of the immune system. Most of all, daily practice reinforces the will and empowers one to take part in the healing process.

Godspeed!

Bob Ellal

Hi Bob
Welcome to CSN, glad to have you here

Hondo

Hondo

nkimber said:

Overwhelmed...
I am utterly overwhelmed by the kindness and thoughtfulness you have all displayed. I cannot tell you how powerful your words are to my mindset, and my health. If only I could have each of you on call every time I started to get scared, I would be living a worry-free life! Just to let you know, when I do start to get scared, I go back to this discussion and read through all of your kind words. You instantly lift me up and make me feel like the fighter I am. It is so uplifting to know that there are so many incredible people out there.

Lots of love and prayers to all of you...

Nicole

Nicole

Like Steve, Kent and everyone said, we are all here for each other, that is what makes us strong.

May God bless and continue to be with you as you continue to go through treatment. Just think of it this way, you are in Gods work shop

Hondo

nkimber

bobellal said:

Prayers
Hi Nicole,

You have my prayers, indeed. I'm a four-time cancer survivor (stage four bone lymphoma, diagnosed '91). It was a rough ride for my family and me but there is light at the end of the tunnel.

Something you might want to try to calm your mind and body: Qigong, Chinese mind/body exercises/meditations. I used qigong during my "fun and games" and it helped me immensely, not only to relieve stress but to take the body out of fight/flight syndrome, which pumps adrenal hormones into the system that interfere with healing. The deep abdominal breathing is the core or the practice, not only calming the mind and moving the body into the parasympathetic nervous system, but providing more oxygen to the blood. It also pumps the lymphatic system, a vital part of the immune system. Most of all, daily practice reinforces the will and empowers one to take part in the healing process.

Godspeed!

Bob Ellal

Bob Hondo Viv and Kent
Thank you for the additional posts... Bob, thank you for the suggestion! I do try to meditate daily, but maybe it's time for something a little more hardcore like you suggested. It is so inspiring to hear that you have won the battle so many times... My prayers are with you that you stay cancer free!

Viv and Hondo, thank you for the prayers as always... It helps me be at peace reading your posts.

Kent, I do need to do some more digging, you are right. I want to be as aggressive as possible and the doctors need to understand that. I have a follow-up appointment on Friday and hope to have a long list of questions written down going into the appointment. I will keep you updated. Thank you again for the advice.

Nicole

ekdennie

nkimber said:

Bob Hondo Viv and Kent
Thank you for the additional posts... Bob, thank you for the suggestion! I do try to meditate daily, but maybe it's time for something a little more hardcore like you suggested. It is so inspiring to hear that you have won the battle so many times... My prayers are with you that you stay cancer free!

Viv and Hondo, thank you for the prayers as always... It helps me be at peace reading your posts.

Kent, I do need to do some more digging, you are right. I want to be as aggressive as possible and the doctors need to understand that. I have a follow-up appointment on Friday and hope to have a long list of questions written down going into the appointment. I will keep you updated. Thank you again for the advice.

Nicole

hey nicole!
hey nicole,
don't forget to ask them the one question I used the most: what would you recommend if your spouse/ kid was diagnosed with this? then ask: how would you treat it or where would you send them if it was a member of your family? I was then called doctors in the area that I didn't even know and asked them if you had someone diagnosed with cancer in the ___________, in my case palate that had grown into the maxillary sinus, who would you send them to? I called all of my regular doctors, then I went on Facebook and asked all of my friends who were doctors, married to doctors, worked for doctors, etc. that way i knew that I had found the best doctor for my treatment. I was also told that the doctor with the best bedside manner can be forgiven that aspect if they are the best in the field in the area where you live.

I preferred that my doctor say something along the lines of, "I know how I would normally treat a tumor of your size in that location, but let me do some research to see if there are any recommendations for your type of tumor that I am not aware of." That let me know that I had a doctor who was willing to seek help if it was necessary. He then called me back in for more tests so he could plan his attack method. vs a doctor who says I know what to do, let's get to it, yet when you ask if they have sent this type of tumor before they say, no

I have to get my little birthday boy to bed. I'll write more later!
hugs!

Vivi C

nkimber said:

Thank you!!!!
Thank you all so very much for your prayers... Didn't sleep too well last night but I am becoming more and more at peace as the morning goes on. Thank you all for your immense faith!

For those who asked, 1:30 EST is my appointment time... who knows when the scan will actually happen!!!

Thanks again and you are all in my prayers as well.

Nicole

Praying
Praying for your Friday appt. Nicole and for lots of peace and wisdom for you.
Viv

Hondo

nkimber said:

Bob Hondo Viv and Kent
Thank you for the additional posts... Bob, thank you for the suggestion! I do try to meditate daily, but maybe it's time for something a little more hardcore like you suggested. It is so inspiring to hear that you have won the battle so many times... My prayers are with you that you stay cancer free!

Viv and Hondo, thank you for the prayers as always... It helps me be at peace reading your posts.

Kent, I do need to do some more digging, you are right. I want to be as aggressive as possible and the doctors need to understand that. I have a follow-up appointment on Friday and hope to have a long list of questions written down going into the appointment. I will keep you updated. Thank you again for the advice.

Nicole

Prayer
Sometimes all we can do is to pray, and I am just happy that I can be a part of all who need prayer