Another Stage IV doing well

MartinG5602

Hello Everyone,
My name is Barrie and I am caregiver for my husband who was DX in Feb of 2011 as Stage 3b. We are at M D Anderson in Houston. He had chemo/proton radiation, then the big Ivor Lewis surgery in Sept of 2011. He is 74 and was released from the hospital on the 4th day. Learning to eat again was perhaps his hardest challenge. This Spring of 2012 a small tumor appeared on one of his Adrenal Glands which made him Stage IV and he repeated chemo/proton radiation again. We go back in Oct. to repeat testing and see where we are. He played golf this morning, never complains, says he feels fine, and says, "God will call me when He is ready and I am not going to worry about it.". His attitude is awesome and amazing . He eats whatever he wants, maintaining about 170 lbs for a year. He lost 70 lbs the first year but now seems stable. He drinks one glass of red wine everyday (from Louisiana) and believes in eating lots of Asperagus and berries. He has done no research on his own, (I try), he simply enjoys his family, goes to Lowes everyday , loves to fix things around the house and watches many old movies. He goes to church and lights candles and prays for many friends who also have cancer now. We have done some traveling within the US and he walks the mall with me. Exercise is important!
I am above and beyond impressed with this board....the best I ever found... You all inspire me with your knowledge and the quick way you so generously offer help to others and I know how comforting that can be. My heart goes out to each of you, patients and caregivers. I lay my hand on top of my screen and pray for individual needs every day. Thank you for sharing your stories and may you each have many,many more good days, never give up hope, and know you do not walk alone.

stephikindred

Thanks for posting!
You post was so sweet I had to share it with my mother who is also Stage IV. Thanks for telling us about your husband and his wonderful attitude. I really love your sweet sentiments, they are truly heartwarming!
Steph

bawa

THAT IS ENCROURAGEMENT FOR US
Hi

That is really encouraging account. For me as a new caregiver of my younger sister, this is a positive account. I want to ask a question since you are at M D Anderson and we are looking at that. How is the palliative care in M D Anderson? It will be good to know.

Bawa

MartinG5602

bawa said:

THAT IS ENCROURAGEMENT FOR US
Hi

That is really encouraging account. For me as a new caregiver of my younger sister, this is a positive account. I want to ask a question since you are at M D Anderson and we are looking at that. How is the palliative care in M D Anderson? It will be good to know.

Bawa

Of course,there are no guarantees
Hi,

We were told that, of course, there are no guarantees, but we have been very pleased with Anderson in every way. They were willing to treat my husband with what treatment he wanted, answered our phone calls almost immediately, and in every step of the way have been optimistic, more than kind, caring and helpful. Anderson is huge, but I have yet to see any staff member from any department who doesn't return a quick smile or offer assistance. When there, you just know you are in one of the best of the best places. We went there for a second opinion in the beginning and will never question our decision to choose Anderson. To get an appt. quickly, we took the advice to " put our face in front of their face " and ask (beg) most kindly. It worked!
I have no way of knowing now how they might treat him if the EC cancer returns again (as apparently this beast often does) but I am certain all avenues of care will be there for us. We use Dr Ho who trained at Stanford, but Anderson applies a whole team approach for each patient. I have loved that! Hope this info helps. If you go, stay at the adjoining Rotary House Hotel.

Barrie

Freida

MartinG5602 said:

Of course,there are no guarantees
Hi,

We were told that, of course, there are no guarantees, but we have been very pleased with Anderson in every way. They were willing to treat my husband with what treatment he wanted, answered our phone calls almost immediately, and in every step of the way have been optimistic, more than kind, caring and helpful. Anderson is huge, but I have yet to see any staff member from any department who doesn't return a quick smile or offer assistance. When there, you just know you are in one of the best of the best places. We went there for a second opinion in the beginning and will never question our decision to choose Anderson. To get an appt. quickly, we took the advice to " put our face in front of their face " and ask (beg) most kindly. It worked!
I have no way of knowing now how they might treat him if the EC cancer returns again (as apparently this beast often does) but I am certain all avenues of care will be there for us. We use Dr Ho who trained at Stanford, but Anderson applies a whole team approach for each patient. I have loved that! Hope this info helps. If you go, stay at the adjoining Rotary House Hotel.

Barrie

Hi BarrieWe go to Dr Ho as
Hi Barrie
We go to Dr Ho as well. We are really glad we made the choice to go to MDA. Bill is a stage 3 but was not a candidate for surgery because of other health issues. We had a slightly different protocol because of this (2 months of induction chemo followed by chemo-radiation - Bill was not eligible for proton therapy because he is too large for the table, but Dr Cox did all his work ups for regular radiation). We have never stayed at rotary house as my best friend lives in Houston and insisted we stay with her when we came for chemo - we rented an apartment for the 6 weeks of radiation which worked out great. MDA is HUGE isn't it. If you are ever there early morning, the cafeteria on the 1st floor has a chef that does an awesome made to order omelet.

Welcome and thanks for sharing your experience.
Freida
Wife of Bill, diagnosed 11/8/2011 T3N2Mx, not a candidate for surgery due to other comorbidities, 2 months induction chemo (bi weekly carboplatin and taxol by infusion and 5FU by continuous 48 hour pump) followed by 6 weeks chemo/radiation (bi weekly carboplatin and taxol by infusion and weekly 5FU by continuous 5 day pump concurrent with radiation). 1st 3 month check up August 2012 good. Living life until 2nd 3 month check up in November.

MartinG5602

Freida said:

Hi BarrieWe go to Dr Ho as
Hi Barrie
We go to Dr Ho as well. We are really glad we made the choice to go to MDA. Bill is a stage 3 but was not a candidate for surgery because of other health issues. We had a slightly different protocol because of this (2 months of induction chemo followed by chemo-radiation - Bill was not eligible for proton therapy because he is too large for the table, but Dr Cox did all his work ups for regular radiation). We have never stayed at rotary house as my best friend lives in Houston and insisted we stay with her when we came for chemo - we rented an apartment for the 6 weeks of radiation which worked out great. MDA is HUGE isn't it. If you are ever there early morning, the cafeteria on the 1st floor has a chef that does an awesome made to order omelet.

Welcome and thanks for sharing your experience.
Freida
Wife of Bill, diagnosed 11/8/2011 T3N2Mx, not a candidate for surgery due to other comorbidities, 2 months induction chemo (bi weekly carboplatin and taxol by infusion and 5FU by continuous 48 hour pump) followed by 6 weeks chemo/radiation (bi weekly carboplatin and taxol by infusion and weekly 5FU by continuous 5 day pump concurrent with radiation). 1st 3 month check up August 2012 good. Living life until 2nd 3 month check up in November.

Thank you,Frieda
Thanks so much for contacting us! We might be at Anderson sometime together and I would love to share a cup of coffee or water and meet you all! We go back on Oct 10th for a new Pet Scan so our paths may not cross just yet, but perhaps one day. We live in Dallas, so it's back and forth. We had an apartment on Buffalo Speedway and Holcombe and it was really OK, just not home. I too have a wonderful friend out in the Memorial Area who helps me when we are there. Thank God for sweet, sweet friends. Isn't Kevin a wonderful P.A.? We adore him! Barrie

Freida

MartinG5602 said:

Thank you,Frieda
Thanks so much for contacting us! We might be at Anderson sometime together and I would love to share a cup of coffee or water and meet you all! We go back on Oct 10th for a new Pet Scan so our paths may not cross just yet, but perhaps one day. We live in Dallas, so it's back and forth. We had an apartment on Buffalo Speedway and Holcombe and it was really OK, just not home. I too have a wonderful friend out in the Memorial Area who helps me when we are there. Thank God for sweet, sweet friends. Isn't Kevin a wonderful P.A.? We adore him! Barrie

Hi Barrie
Yes Kevin is
Hi Barrie
Yes Kevin is great. In August we saw a different PA who was also very nice. We also really like Angela, Dr Ho's main nurse.

We live in North Oklahoma so we are also back and forth. Having a good friend there has just been a lifesaver. We stayed in an apartment on Fallen, right opposite the big arena there. Bill's radiation coincided with the Houston Rodeo which made finding a place heard. I actually enjoyed staying in the area (other than the whole radiation and chemo part). We live in a very small town and i enjoyed having nice restaurants around when Bill was feeling up to eating. And Fiesta grocery store - love that place especially the selection of British food.

Our next appt is Early November. Trying not to think too much about it - I suffered major scanxiety at the last one! Maybe one day we will cross paths there.
Freida

MartinG5602

Freida said:

Hi Barrie
Yes Kevin is
Hi Barrie
Yes Kevin is great. In August we saw a different PA who was also very nice. We also really like Angela, Dr Ho's main nurse.

We live in North Oklahoma so we are also back and forth. Having a good friend there has just been a lifesaver. We stayed in an apartment on Fallen, right opposite the big arena there. Bill's radiation coincided with the Houston Rodeo which made finding a place heard. I actually enjoyed staying in the area (other than the whole radiation and chemo part). We live in a very small town and i enjoyed having nice restaurants around when Bill was feeling up to eating. And Fiesta grocery store - love that place especially the selection of British food.

Our next appt is Early November. Trying not to think too much about it - I suffered major scanxiety at the last one! Maybe one day we will cross paths there.
Freida

New surgery for Adrenal Met
Hi Freida,

Was wondering about your November trip to Anderson. Hope all went well!
My husband, Martin, is also now seeing an Endrocrine surgeon on the 9th floor preparing Martin for surgery to remove the Adrenal Gland on January 14, unless something else shows up on another Petscans on Jan. 7. He has gained 5 lbs, always hungry now, doing very well! We are blessed!
I will keep you posted. Please do the same.

Barrie

Freida

MartinG5602 said:

New surgery for Adrenal Met
Hi Freida,

Was wondering about your November trip to Anderson. Hope all went well!
My husband, Martin, is also now seeing an Endrocrine surgeon on the 9th floor preparing Martin for surgery to remove the Adrenal Gland on January 14, unless something else shows up on another Petscans on Jan. 7. He has gained 5 lbs, always hungry now, doing very well! We are blessed!
I will keep you posted. Please do the same.

Barrie

Hi Barrie
The November trip
Hi Barrie
The November trip went well. It was just a CT scan this time and there was no sign of any cancer. We are back again in Feb for the next three month check up plus a visit with a hematologist. Not cancer related. We were hoping Bill might be able to get off the twice a day lovenox shots (blood thinner) that he has been on since our first visit last December. For one thing they leave his tummy a black and blue lumpy mess. For another that stuff is crazy expensive. $300 a month for now, but will be over $3000 in january then $2000+ in feb as we start the new medicare D year and have to go through the donut hole again. This year we were out of the donut hole by Feb, having spent over $5,000 out of pocket already. Hate to have to worry about money vs health - but we do like to be able to eat as well! Dr H is reluctant to stop the lovenox because Bill threw that last clot in 2011 while he was on coumadin. He has arranged for us to meet with a hematologist next time to see if they can figure out why the clots happen (first time 8 years ago nearly killed him and caused substantial lung and heart damage). He says there may be other options other than coumadin or lovanox. Bill would sure be happy if there are.

I hope the surgery goes well in january. That seems like a long way away? Is there a reason they are waiting till January?
Freida

englishlady

Freida said:

Hi Barrie
The November trip
Hi Barrie
The November trip went well. It was just a CT scan this time and there was no sign of any cancer. We are back again in Feb for the next three month check up plus a visit with a hematologist. Not cancer related. We were hoping Bill might be able to get off the twice a day lovenox shots (blood thinner) that he has been on since our first visit last December. For one thing they leave his tummy a black and blue lumpy mess. For another that stuff is crazy expensive. $300 a month for now, but will be over $3000 in january then $2000+ in feb as we start the new medicare D year and have to go through the donut hole again. This year we were out of the donut hole by Feb, having spent over $5,000 out of pocket already. Hate to have to worry about money vs health - but we do like to be able to eat as well! Dr H is reluctant to stop the lovenox because Bill threw that last clot in 2011 while he was on coumadin. He has arranged for us to meet with a hematologist next time to see if they can figure out why the clots happen (first time 8 years ago nearly killed him and caused substantial lung and heart damage). He says there may be other options other than coumadin or lovanox. Bill would sure be happy if there are.

I hope the surgery goes well in january. That seems like a long way away? Is there a reason they are waiting till January?
Freida

Good news
Great news on the scan results. Hoping for same on my husbands next scan.

goty2001

englishlady said:

Good news
Great news on the scan results. Hoping for same on my husbands next scan.

maintenance mode
I'm a stage IV inoperable - just got 3rd scan results after 18 weeks of chemo - have gone into 'maintenance'mode - I think they used to call it remission - and ended chemo for now - continuing only with herceptin. Looking forward to some feeling coming back to fingertips, finishing the bottle of amarone I opened tonight, and christmas on catba island (Vietnam) with family.

MartinG5602

Freida said:

Hi Barrie
The November trip
Hi Barrie
The November trip went well. It was just a CT scan this time and there was no sign of any cancer. We are back again in Feb for the next three month check up plus a visit with a hematologist. Not cancer related. We were hoping Bill might be able to get off the twice a day lovenox shots (blood thinner) that he has been on since our first visit last December. For one thing they leave his tummy a black and blue lumpy mess. For another that stuff is crazy expensive. $300 a month for now, but will be over $3000 in january then $2000+ in feb as we start the new medicare D year and have to go through the donut hole again. This year we were out of the donut hole by Feb, having spent over $5,000 out of pocket already. Hate to have to worry about money vs health - but we do like to be able to eat as well! Dr H is reluctant to stop the lovenox because Bill threw that last clot in 2011 while he was on coumadin. He has arranged for us to meet with a hematologist next time to see if they can figure out why the clots happen (first time 8 years ago nearly killed him and caused substantial lung and heart damage). He says there may be other options other than coumadin or lovanox. Bill would sure be happy if there are.

I hope the surgery goes well in january. That seems like a long way away? Is there a reason they are waiting till January?
Freida

Surgery in January
Hi Freida,
Dr Ho sent us up to the 9th floor for consultation with the Endrocronologist cancer surgeon...very nice lady, also from Louisiana, so Martin felt comfortable right away. She wanted a little more time out from the chemo before operating. Do so hope she made the right decision! Martin continues well and enjoying life. He takes an afternoon nap, and I insist we walk a mile a day....not his favorite sport, but he knows it is good to exercise. He continues to not worry which beats the heck out of me, but I think he may be on to something good!

Do hope you and family have a blessed Holiday,

Barrie