› Forums › General Melanoma Community › Disappointing scan results. Off Zelboraf. Eye issue continues. Mulling over treatment options.
- This topic has 69 replies, 11 voices, and was last updated 11 years, 7 months ago by
beatricefromPARIS.
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- December 5, 2012 at 11:50 pm
Scan results today show Mel is back in my abdomen. One area 2 1/2 X 3 1/2 cm and two smaller nodes adjacent. SO disappointing : ( . SO hard to have to hear that and then for us to relay this to the kids. Our Oncologist will be calling IU MEd and also Siteman Cancer Center ( Dr Linette) to discuss treatment options. We have been in the process of getting an appt with Dr Linette, so he may already have some of my records.
Scan results today show Mel is back in my abdomen. One area 2 1/2 X 3 1/2 cm and two smaller nodes adjacent. SO disappointing : ( . SO hard to have to hear that and then for us to relay this to the kids. Our Oncologist will be calling IU MEd and also Siteman Cancer Center ( Dr Linette) to discuss treatment options. We have been in the process of getting an appt with Dr Linette, so he may already have some of my records. Ideas discussed today were : surgery, Ipi, and another Zelboraf type drug that is supposed to be more effective, but is awaiting approval ( havent heard of this and unsure what it is). My uveitis has only slightly improved, and I am thinking they would not start any new treatment with this issue. Since I will likely have to wait for my eye to heal, if they dont need the tumor left in, I may prefer surgery first, then beginning of the yr when I am healed up enough, start ipi ( just thinking out loud) Should hear back from my Oncologist by Friday and we will try to make the best decision based on what they tell us. Praying for wisdom! *sigh* Feeling a little battle-weary, but remaining SO thankful for my life and all He has blessed me with.
On a good note, the eye Dr does not think my vision will be permanently damaged & I am very thankful for that news! My pupil is actually shaped like a sideways heart at the moment… looks rather unusual, haha!
- Replies
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- December 6, 2012 at 1:42 am
Well shoot, Tina, that does stink but I'm glad to hear other drugs are available. Praying you get into to see Dr. Linette soon. Fen
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- December 6, 2012 at 1:50 am
Weeping with you…:-(((….I'm soooo sorry, Linda ! I thought about you and prayed for you today ! Wayne and I willcontinue to do so. Wayne heading to MDA tomorrow and I'm too sick to go, so I share in your sorrow over this miserable illness that causes so much heartache and sickness. He is not feeling well at all for the trip, but this is your post and I was just trying to say: WE CAN RELATE and ARE SO VERY SORRY ! 🙁
I'm glad to hear that they THINK the vision will come back, but sorry they can't move along with treatment until eye heals. Wayne ask if you have done Yervoy ? He said he thought he remembered reading that you had.
KNOW THAT GOD LOVES YOU – and THERE ARE MANY HERE WHO CARE ABOUT YOU AND WHAT HAPPENS TO YOU ! I'm sure your EYE is HEART shaped because your heart is so big and loving. <3
PLEASE KEEP US UPDATED.
Nancy and Wayne (3 X WARRIOR)
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- December 6, 2012 at 1:50 am
Weeping with you…:-(((….I'm soooo sorry, Linda ! I thought about you and prayed for you today ! Wayne and I willcontinue to do so. Wayne heading to MDA tomorrow and I'm too sick to go, so I share in your sorrow over this miserable illness that causes so much heartache and sickness. He is not feeling well at all for the trip, but this is your post and I was just trying to say: WE CAN RELATE and ARE SO VERY SORRY ! 🙁
I'm glad to hear that they THINK the vision will come back, but sorry they can't move along with treatment until eye heals. Wayne ask if you have done Yervoy ? He said he thought he remembered reading that you had.
KNOW THAT GOD LOVES YOU – and THERE ARE MANY HERE WHO CARE ABOUT YOU AND WHAT HAPPENS TO YOU ! I'm sure your EYE is HEART shaped because your heart is so big and loving. <3
PLEASE KEEP US UPDATED.
Nancy and Wayne (3 X WARRIOR)
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- December 6, 2012 at 2:24 am
Tina, sorry, I called you LINDA ! I'm a little crazy today. Please forgive.
HANG IN THERE GIRL – you are a fighter ……………:-)
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- December 6, 2012 at 2:24 am
Tina, sorry, I called you LINDA ! I'm a little crazy today. Please forgive.
HANG IN THERE GIRL – you are a fighter ……………:-)
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- December 6, 2012 at 2:24 am
Tina, sorry, I called you LINDA ! I'm a little crazy today. Please forgive.
HANG IN THERE GIRL – you are a fighter ……………:-)
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- December 6, 2012 at 1:50 am
Weeping with you…:-(((….I'm soooo sorry, Linda ! I thought about you and prayed for you today ! Wayne and I willcontinue to do so. Wayne heading to MDA tomorrow and I'm too sick to go, so I share in your sorrow over this miserable illness that causes so much heartache and sickness. He is not feeling well at all for the trip, but this is your post and I was just trying to say: WE CAN RELATE and ARE SO VERY SORRY ! 🙁
I'm glad to hear that they THINK the vision will come back, but sorry they can't move along with treatment until eye heals. Wayne ask if you have done Yervoy ? He said he thought he remembered reading that you had.
KNOW THAT GOD LOVES YOU – and THERE ARE MANY HERE WHO CARE ABOUT YOU AND WHAT HAPPENS TO YOU ! I'm sure your EYE is HEART shaped because your heart is so big and loving. <3
PLEASE KEEP US UPDATED.
Nancy and Wayne (3 X WARRIOR)
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- December 6, 2012 at 3:16 am
Tina,I am so very sorry to hear this, I just emailed you. Keep fighting! You should email ErinMay. she started Ipi first, then abdominal surgery, and just finished Ipi #4. Sounds very similar to your situation.
Amy
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- December 6, 2012 at 3:16 am
Tina,I am so very sorry to hear this, I just emailed you. Keep fighting! You should email ErinMay. she started Ipi first, then abdominal surgery, and just finished Ipi #4. Sounds very similar to your situation.
Amy
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- December 6, 2012 at 3:16 am
Tina,I am so very sorry to hear this, I just emailed you. Keep fighting! You should email ErinMay. she started Ipi first, then abdominal surgery, and just finished Ipi #4. Sounds very similar to your situation.
Amy
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- December 6, 2012 at 12:59 pm
Oh, Tina! I'm so sorry for your disappointing news! And a recurrance on top of the eye problems is just not fair!
I think your idea of surgery for now followed by a different drug makes a lot of sense. You are one tough cookie!
I will be praying for you. Please do keep us posted about your decision.
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- December 6, 2012 at 12:59 pm
Oh, Tina! I'm so sorry for your disappointing news! And a recurrance on top of the eye problems is just not fair!
I think your idea of surgery for now followed by a different drug makes a lot of sense. You are one tough cookie!
I will be praying for you. Please do keep us posted about your decision.
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- December 6, 2012 at 12:59 pm
Oh, Tina! I'm so sorry for your disappointing news! And a recurrance on top of the eye problems is just not fair!
I think your idea of surgery for now followed by a different drug makes a lot of sense. You are one tough cookie!
I will be praying for you. Please do keep us posted about your decision.
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- December 6, 2012 at 3:24 pm
Tina, I am so sorry….Please do the surgery and get those tumors out of your stomach….Jim passed away on Nov 30, 2010….they did emergency surgery on the 18th, he had like 13 tumors….he was unstable during surgery…He was so sick, and so weak getting blood transfusions every 2 weeks…losing muscle mass, etc…hurt so bad to see him get so weak….they only got the 1 tumors that was making him sick, but said too weak and unstable to get any of the others, and they were going to do the same thing…..so I am pleading and begging you to please do surgery and get them out first.
Thinking of you and yours and wishing you well.
Take Care,
Sherron, wife to Jim FOREVER
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- December 6, 2012 at 3:24 pm
Tina, I am so sorry….Please do the surgery and get those tumors out of your stomach….Jim passed away on Nov 30, 2010….they did emergency surgery on the 18th, he had like 13 tumors….he was unstable during surgery…He was so sick, and so weak getting blood transfusions every 2 weeks…losing muscle mass, etc…hurt so bad to see him get so weak….they only got the 1 tumors that was making him sick, but said too weak and unstable to get any of the others, and they were going to do the same thing…..so I am pleading and begging you to please do surgery and get them out first.
Thinking of you and yours and wishing you well.
Take Care,
Sherron, wife to Jim FOREVER
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- December 6, 2012 at 3:24 pm
Tina, I am so sorry….Please do the surgery and get those tumors out of your stomach….Jim passed away on Nov 30, 2010….they did emergency surgery on the 18th, he had like 13 tumors….he was unstable during surgery…He was so sick, and so weak getting blood transfusions every 2 weeks…losing muscle mass, etc…hurt so bad to see him get so weak….they only got the 1 tumors that was making him sick, but said too weak and unstable to get any of the others, and they were going to do the same thing…..so I am pleading and begging you to please do surgery and get them out first.
Thinking of you and yours and wishing you well.
Take Care,
Sherron, wife to Jim FOREVER
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- December 7, 2012 at 3:13 pm
Thank you, Sherron,
I have read your bio abt your husband, and you have sure had a very painful journey & I am so sorry. I appreciate that you would take the time to send such a heart-felt response. I have heard from others that the post-Zelboraf tumors tend to be more aggressive, so I dont intend to leave it there too long. If we opt for surgery first thing, I will likely have it early next week. I am waiting on a call back from the Dr…hopefully today. Thank you for sharing even with all of your own personal grief and loss.
Tina
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- December 7, 2012 at 3:13 pm
Thank you, Sherron,
I have read your bio abt your husband, and you have sure had a very painful journey & I am so sorry. I appreciate that you would take the time to send such a heart-felt response. I have heard from others that the post-Zelboraf tumors tend to be more aggressive, so I dont intend to leave it there too long. If we opt for surgery first thing, I will likely have it early next week. I am waiting on a call back from the Dr…hopefully today. Thank you for sharing even with all of your own personal grief and loss.
Tina
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- December 7, 2012 at 3:13 pm
Thank you, Sherron,
I have read your bio abt your husband, and you have sure had a very painful journey & I am so sorry. I appreciate that you would take the time to send such a heart-felt response. I have heard from others that the post-Zelboraf tumors tend to be more aggressive, so I dont intend to leave it there too long. If we opt for surgery first thing, I will likely have it early next week. I am waiting on a call back from the Dr…hopefully today. Thank you for sharing even with all of your own personal grief and loss.
Tina
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- December 6, 2012 at 4:03 pm
Hi Tina,
Are you going to the Seidman Cancer Center at University Hospital in Cleveland Area? That is where my husband goes and his oncologist is Dr. Henry Koon and he has quite a bit of experience with melanoma. We really like Dr. Koon and he has spoke at several seminars on melanoma. Also his clinical trial is through them for the Ipi (Yervoy). Read his profile if you want more information on his trial.
Prayers for quick heal of the eye problems and that your treatments go well.
Judy (loving wife of Gene)
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- December 6, 2012 at 4:03 pm
Hi Tina,
Are you going to the Seidman Cancer Center at University Hospital in Cleveland Area? That is where my husband goes and his oncologist is Dr. Henry Koon and he has quite a bit of experience with melanoma. We really like Dr. Koon and he has spoke at several seminars on melanoma. Also his clinical trial is through them for the Ipi (Yervoy). Read his profile if you want more information on his trial.
Prayers for quick heal of the eye problems and that your treatments go well.
Judy (loving wife of Gene)
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- December 6, 2012 at 4:03 pm
Hi Tina,
Are you going to the Seidman Cancer Center at University Hospital in Cleveland Area? That is where my husband goes and his oncologist is Dr. Henry Koon and he has quite a bit of experience with melanoma. We really like Dr. Koon and he has spoke at several seminars on melanoma. Also his clinical trial is through them for the Ipi (Yervoy). Read his profile if you want more information on his trial.
Prayers for quick heal of the eye problems and that your treatments go well.
Judy (loving wife of Gene)
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- December 7, 2012 at 3:16 pm
The place we had decided on is Siteman Cancer Center in St Louis, but we may not actually trave anywhere if my Dr manages to talk with them on the phone. My records had already been sent ( or at least the process started) before I went for the scans. I was truly not expecting anything to show up on the PET. Treatment decisions, including where to go, can get so overwhelming! What a blessing to live in a place where there are so many wonderful options!
Thank you for the prayers and advice. I will keep Cleveland in mind, too, since it isnt too much further away than St Louis.
Tina
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- December 7, 2012 at 3:16 pm
The place we had decided on is Siteman Cancer Center in St Louis, but we may not actually trave anywhere if my Dr manages to talk with them on the phone. My records had already been sent ( or at least the process started) before I went for the scans. I was truly not expecting anything to show up on the PET. Treatment decisions, including where to go, can get so overwhelming! What a blessing to live in a place where there are so many wonderful options!
Thank you for the prayers and advice. I will keep Cleveland in mind, too, since it isnt too much further away than St Louis.
Tina
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- December 7, 2012 at 3:16 pm
The place we had decided on is Siteman Cancer Center in St Louis, but we may not actually trave anywhere if my Dr manages to talk with them on the phone. My records had already been sent ( or at least the process started) before I went for the scans. I was truly not expecting anything to show up on the PET. Treatment decisions, including where to go, can get so overwhelming! What a blessing to live in a place where there are so many wonderful options!
Thank you for the prayers and advice. I will keep Cleveland in mind, too, since it isnt too much further away than St Louis.
Tina
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- December 7, 2012 at 6:09 am
Dear Tina,
I am so sorry! I think the drug they're talking about is dabrafenib. I am actually looking into a trial with that and a mek inhibitor VS Zelboraf. From what I've read it does have lighter side effects. My doctor said that the Mek inhibitor Trametinib and the newer BRAF inhibitor could be FDA approved some time next year. I hope this is the case!! Maybe look into the dabrafenib online to research. I am pretty sure this is what your doctor is talking about.
Keep fighting Tina. ((((BIG HUGS)))))
Denise
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- December 8, 2012 at 11:58 pm
Just an update: I have an appt with Dr Linette at Barnes-Jewish Hospital in St Louis for THIS WED!! Amazed to get in so quickly. Also, expecting a call from my Oncologist Monday after he speaks with my surgeon and other melanoma specialists. Thankful things are moving so quickly.
Tina
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- December 8, 2012 at 11:58 pm
Just an update: I have an appt with Dr Linette at Barnes-Jewish Hospital in St Louis for THIS WED!! Amazed to get in so quickly. Also, expecting a call from my Oncologist Monday after he speaks with my surgeon and other melanoma specialists. Thankful things are moving so quickly.
Tina
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- December 8, 2012 at 11:58 pm
Just an update: I have an appt with Dr Linette at Barnes-Jewish Hospital in St Louis for THIS WED!! Amazed to get in so quickly. Also, expecting a call from my Oncologist Monday after he speaks with my surgeon and other melanoma specialists. Thankful things are moving so quickly.
Tina
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- December 7, 2012 at 6:09 am
Dear Tina,
I am so sorry! I think the drug they're talking about is dabrafenib. I am actually looking into a trial with that and a mek inhibitor VS Zelboraf. From what I've read it does have lighter side effects. My doctor said that the Mek inhibitor Trametinib and the newer BRAF inhibitor could be FDA approved some time next year. I hope this is the case!! Maybe look into the dabrafenib online to research. I am pretty sure this is what your doctor is talking about.
Keep fighting Tina. ((((BIG HUGS)))))
Denise
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- December 7, 2012 at 6:09 am
Dear Tina,
I am so sorry! I think the drug they're talking about is dabrafenib. I am actually looking into a trial with that and a mek inhibitor VS Zelboraf. From what I've read it does have lighter side effects. My doctor said that the Mek inhibitor Trametinib and the newer BRAF inhibitor could be FDA approved some time next year. I hope this is the case!! Maybe look into the dabrafenib online to research. I am pretty sure this is what your doctor is talking about.
Keep fighting Tina. ((((BIG HUGS)))))
Denise
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- December 9, 2012 at 8:44 pm
Tina
Sorry to hear about Zelboraf but hope the eye Doc is correct. Glad to see you are getting in to see Dr Linette so quickly.
Dick
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- December 12, 2012 at 8:34 pm
THINKING OF YOU TODAY, TINA D ! 🙂 Hope your Doc appointment goes really, really well and you like him/them and they are very skilled and wise in the path they lead you.
UPDATE US WHEN YOU CAN !
Nancy (devoted wife of 3 X Warrior Wayne) <><
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- December 12, 2012 at 8:34 pm
THINKING OF YOU TODAY, TINA D ! 🙂 Hope your Doc appointment goes really, really well and you like him/them and they are very skilled and wise in the path they lead you.
UPDATE US WHEN YOU CAN !
Nancy (devoted wife of 3 X Warrior Wayne) <><
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- December 14, 2012 at 3:55 pm
Nancy,
The appt in St Louis couldn't have been any better ( unless I had been told the whole scan was misread,hahaha). We are VERY impressed with Dr Linette in every way. I have decided to start ipi at his recommendation and my first infusion will be this coming Wednesday! I have decided to travel there for him to oversee my treatment & explore new options if necessary. Hubby and I had a nice trip out and stayed overnight… it was actually a very enjoyable time. We always try to make any of this type of trip as enjoyable as possible, frequently taking one or more of the kids with us and making an outing of it 🙂 . In fact, last night the youngest two were already talking abt how great it would be to get to go to St Louis… so looks like we may have companions on the next trip out 🙂
Still rejoicing with you guys over your happy, happy news 🙂
Tina
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- December 26, 2012 at 9:05 pm
Tina D……have I missed your post during the Holiday ? How are you ? Update me if you feel like it ?
WISHING THE BEST FOR YOU AND THINKING OF YOU…..
Nancy (devoted wife of 3 X Warrior Wayne)
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- December 26, 2012 at 9:05 pm
Tina D……have I missed your post during the Holiday ? How are you ? Update me if you feel like it ?
WISHING THE BEST FOR YOU AND THINKING OF YOU…..
Nancy (devoted wife of 3 X Warrior Wayne)
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- January 4, 2013 at 3:13 pm
TINA D – I am WORRIED about you ! Please get someone to post an UPDATE if you are not feeling well enough to.
THINKING OF YOU….
Nancy (devoted wife of 3 X Warrior Wayne)
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- January 4, 2013 at 3:13 pm
TINA D – I am WORRIED about you ! Please get someone to post an UPDATE if you are not feeling well enough to.
THINKING OF YOU….
Nancy (devoted wife of 3 X Warrior Wayne)
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- January 7, 2013 at 4:20 pm
so sorry I missed these notes, I have been so incredibly sick and weak. I left a brief update on the other post that Amy had updated for me. I will write more as I recover, but am happy to say I am heading home today. Adhesions were the entire cause of all the pain,N/V, high WBC, fever, etc. Thank God it has all worked out as well as it has. So sorry to have worried you.
Thank you for praying and caring!
Tina
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- January 7, 2013 at 4:20 pm
so sorry I missed these notes, I have been so incredibly sick and weak. I left a brief update on the other post that Amy had updated for me. I will write more as I recover, but am happy to say I am heading home today. Adhesions were the entire cause of all the pain,N/V, high WBC, fever, etc. Thank God it has all worked out as well as it has. So sorry to have worried you.
Thank you for praying and caring!
Tina
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- May 6, 2014 at 6:12 pm
Hello Tina
Hope you are bearing your current trial well.
Picking up on an old thread of messages…
Just curious to know if the strange-shaped pupil you got when under Zelboraf went back to normal? I am concerned by mine!
Wishing you the best.
BeatricefromParis
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- May 6, 2014 at 6:12 pm
Hello Tina
Hope you are bearing your current trial well.
Picking up on an old thread of messages…
Just curious to know if the strange-shaped pupil you got when under Zelboraf went back to normal? I am concerned by mine!
Wishing you the best.
BeatricefromParis
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- May 6, 2014 at 6:12 pm
Hello Tina
Hope you are bearing your current trial well.
Picking up on an old thread of messages…
Just curious to know if the strange-shaped pupil you got when under Zelboraf went back to normal? I am concerned by mine!
Wishing you the best.
BeatricefromParis
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- January 7, 2013 at 4:20 pm
so sorry I missed these notes, I have been so incredibly sick and weak. I left a brief update on the other post that Amy had updated for me. I will write more as I recover, but am happy to say I am heading home today. Adhesions were the entire cause of all the pain,N/V, high WBC, fever, etc. Thank God it has all worked out as well as it has. So sorry to have worried you.
Thank you for praying and caring!
Tina
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- January 4, 2013 at 3:13 pm
TINA D – I am WORRIED about you ! Please get someone to post an UPDATE if you are not feeling well enough to.
THINKING OF YOU….
Nancy (devoted wife of 3 X Warrior Wayne)
-
- December 26, 2012 at 9:05 pm
Tina D……have I missed your post during the Holiday ? How are you ? Update me if you feel like it ?
WISHING THE BEST FOR YOU AND THINKING OF YOU…..
Nancy (devoted wife of 3 X Warrior Wayne)
-
- December 14, 2012 at 3:55 pm
Nancy,
The appt in St Louis couldn't have been any better ( unless I had been told the whole scan was misread,hahaha). We are VERY impressed with Dr Linette in every way. I have decided to start ipi at his recommendation and my first infusion will be this coming Wednesday! I have decided to travel there for him to oversee my treatment & explore new options if necessary. Hubby and I had a nice trip out and stayed overnight… it was actually a very enjoyable time. We always try to make any of this type of trip as enjoyable as possible, frequently taking one or more of the kids with us and making an outing of it 🙂 . In fact, last night the youngest two were already talking abt how great it would be to get to go to St Louis… so looks like we may have companions on the next trip out 🙂
Still rejoicing with you guys over your happy, happy news 🙂
Tina
-
- December 14, 2012 at 3:55 pm
Nancy,
The appt in St Louis couldn't have been any better ( unless I had been told the whole scan was misread,hahaha). We are VERY impressed with Dr Linette in every way. I have decided to start ipi at his recommendation and my first infusion will be this coming Wednesday! I have decided to travel there for him to oversee my treatment & explore new options if necessary. Hubby and I had a nice trip out and stayed overnight… it was actually a very enjoyable time. We always try to make any of this type of trip as enjoyable as possible, frequently taking one or more of the kids with us and making an outing of it 🙂 . In fact, last night the youngest two were already talking abt how great it would be to get to go to St Louis… so looks like we may have companions on the next trip out 🙂
Still rejoicing with you guys over your happy, happy news 🙂
Tina
-
- December 12, 2012 at 8:34 pm
THINKING OF YOU TODAY, TINA D ! 🙂 Hope your Doc appointment goes really, really well and you like him/them and they are very skilled and wise in the path they lead you.
UPDATE US WHEN YOU CAN !
Nancy (devoted wife of 3 X Warrior Wayne) <><
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