Stage IV, Chemo, and other drug regimens

jax568

I would like to know how other Stage IV patients are being treated and how they are handling treatment. I wonder if we can learn anything from sharing.

My husband was diagnosed with Stage IV in August of 2011 age 45. Has a 5cm tumor at the gi junction. There are multiple enlarged lymph nodes in the paraesophageal region and in the upper abdomen in the gastrohepatic ligament region. Multiple lesions in both lobes of liver.

He started chemo on 8/22/11
DAY 1
Docetaxel - not sure of dosage but given over an hour
Iron - 100.000mg 15 min infusion
Leucovorin - 600.mg 30 min infusion
Goes home with Fluorouracil until day 3 - not sure maybe 4400.mg

On 9/19 he started on Herceptin, from now on to be given on Day 1

DAY 3
Ativan 1mg pill
Dexametha 3 pills 12mg - Decadron
Emend 125mg pill
Aloxi - 250.mc
Cisplatin 80.mg

Day 4 and 5
Decadron
Emend
Zofran as needed
This is done every two weeks.

After the first treatment my husband was like a new person, he felt much better and was able to eat anything and everything. He has completed 3 treatments and continues to feel good, not great but better than before diagnoses. He has gained back all weight lost. Thank goodness has no pain and hasn't needed to take any pain meds. He hasn't missed a day of work and seems to be in good spirits. He also doesn't look on the internet or ask many questions. He feels that he would perfer not to know any details so as he will be better able to keep positive at all times. With that said he does understand that at any time things can go bad.

Doctor plans to scan after 4th treatment. Treatment would continue for at least 6 months if all goes well. He is being treated by Memorial Sloan Kettering in NYC.

If any other stage IV would like to share, I would love to hear from you.

Jackie

chemosmoker

WELCOME and here is part of my story...
Jackie,

As usual, hate to say it, but WELCOME to our group! I know I have seen you around and I have read your posts before. I will share as if you are just arriving today...
If you click on peoples pictures on the left site of their posts, you can see our "About Me" pages and read many of our stories there. Here is some of my journey so far...

I am a stage IV EC too. I am 43 years old and VERY happy to be here.
I am receiving NO treatment other than palliative care. Mostly pain management. Your hubby sounds very fortunate to have no pain. My case it very different in that aspect. I have intense pain in the area of my stomach, center of my chest. Thankfully, after some work, with pain management, I am pain-free almost 100% of the time now.
I am continuing to live my life to the fullest. I am spending every day making the memories of a lifetime, literally.
I have been "told" I have 4-6 months to live. That was in mid-August. I don't live by their time table or their expectations, but I AM realistic. I chose not to take any chemotherapy because of the short amount of time it would have added to my life expectancy, and seeing the side-effects and others experience with it, I did not want to possibly spend my remaining time feeling sick(er) or possibly lose my battle to chemo before the cancer would have taken me.
I am married to the most wonderful, understanding, intelligent and caring woman in the world. We have been married 16 years and we are madly in love. We are spending every day walking, talking, sharing, and enjoying each other to the fullest extent possible.

While there was/is always the chance that my chemo/treatment experience might have gone as well as your husbands sounds like it is going so far, I am not the type of person who like hospitals, infusion labs, needles, and so forth to the point that I am very happy with my choice and with the outcome so far.

I was never a candidate for surgery as I was diagnosed at stage IV from day 1, save for some overly optimistic oncologists that I had to educate myself in the beginning. They are on our side now, and are fully supporting my palliative care.

We have recently called in Hospice, rather than waiting for the "end" to have their services and help. THAT was probably one of the best decisions I have made to date, after the choice NOT to do any chemotherapy. They are wonderful and very supportive and plan to be with us a long as they are needed. I highly recommend them to anyone with stage IV cancer as early as possible, and I owe that knowledge to Sherri and others on THIS board who educated me.

There are a LOT of wonderful people and stories, love, support and advice here on this board. After joining many different internet discussion boards and groups that I found online, I am grateful to have found the ACS CSN board here as it it unlike any of the others. We are a very supportive, and caring community of friends, most of whom have never and might never meet.

Again, I welcome you. I can only hope that your husband continues to do as well as it sounds like he is doing so far.

Feel free to post often, ask as many questions as you can think of, and expect MANY more posts and replies after mine, here.

Best wishes and God bless,

-Eric

jax568

chemosmoker said:

WELCOME and here is part of my story...
Jackie,

As usual, hate to say it, but WELCOME to our group! I know I have seen you around and I have read your posts before. I will share as if you are just arriving today...
If you click on peoples pictures on the left site of their posts, you can see our "About Me" pages and read many of our stories there. Here is some of my journey so far...

I am a stage IV EC too. I am 43 years old and VERY happy to be here.
I am receiving NO treatment other than palliative care. Mostly pain management. Your hubby sounds very fortunate to have no pain. My case it very different in that aspect. I have intense pain in the area of my stomach, center of my chest. Thankfully, after some work, with pain management, I am pain-free almost 100% of the time now.
I am continuing to live my life to the fullest. I am spending every day making the memories of a lifetime, literally.
I have been "told" I have 4-6 months to live. That was in mid-August. I don't live by their time table or their expectations, but I AM realistic. I chose not to take any chemotherapy because of the short amount of time it would have added to my life expectancy, and seeing the side-effects and others experience with it, I did not want to possibly spend my remaining time feeling sick(er) or possibly lose my battle to chemo before the cancer would have taken me.
I am married to the most wonderful, understanding, intelligent and caring woman in the world. We have been married 16 years and we are madly in love. We are spending every day walking, talking, sharing, and enjoying each other to the fullest extent possible.

While there was/is always the chance that my chemo/treatment experience might have gone as well as your husbands sounds like it is going so far, I am not the type of person who like hospitals, infusion labs, needles, and so forth to the point that I am very happy with my choice and with the outcome so far.

I was never a candidate for surgery as I was diagnosed at stage IV from day 1, save for some overly optimistic oncologists that I had to educate myself in the beginning. They are on our side now, and are fully supporting my palliative care.

We have recently called in Hospice, rather than waiting for the "end" to have their services and help. THAT was probably one of the best decisions I have made to date, after the choice NOT to do any chemotherapy. They are wonderful and very supportive and plan to be with us a long as they are needed. I highly recommend them to anyone with stage IV cancer as early as possible, and I owe that knowledge to Sherri and others on THIS board who educated me.

There are a LOT of wonderful people and stories, love, support and advice here on this board. After joining many different internet discussion boards and groups that I found online, I am grateful to have found the ACS CSN board here as it it unlike any of the others. We are a very supportive, and caring community of friends, most of whom have never and might never meet.

Again, I welcome you. I can only hope that your husband continues to do as well as it sounds like he is doing so far.

Feel free to post often, ask as many questions as you can think of, and expect MANY more posts and replies after mine, here.

Best wishes and God bless,

-Eric

Eric I think you are amazing
Eric, I read all your posts. I am amazed at your courage. I hope to follow you on these boards for a long time and pull your strength and knowlege from the posts. I am happy to hear your pain is under control.
I don't believe my husband can do what you have chose to do. I wonder is he handling the chemo well or is it just too soon? or is the chemo not that strong? well, this is why I started my thread, to see if I can figure this out. Thank you for your kinds words and god bless.

Jackie

Unknown

This comment has been removed by the Moderator

pjlee123

Stage IV treatment
My father in law is just starting chemo for stage IV.

I don't recall the all the drug names off hand, but he's getting:

1. One of the cisplatins
2. 5-FU
3. An experimental anti-angiogenesis drug (tries to block the formation of new blood vessels that would supply the cancer) vs placebo

Chemo is every two weeks. Imaging is at 10 weeks and then every 8 weeks.

No additional meds to deal with side effects -- yet.

Would love to hear from more of you.

pjlee123

Stage IV treatment
My father in law is just starting chemo for stage IV.

I don't recall the all the drug names off hand, but he's getting:

1. One of the cisplatins
2. 5-FU
3. An experimental anti-angiogenesis drug (tries to block the formation of new blood vessels that would supply the cancer) vs placebo

Chemo is every two weeks. Imaging is at 10 weeks and then every 8 weeks.

No additional meds to deal with side effects -- yet.

Would love to hear from more of you.

lilrusty

unknown said:

This comment has been removed by the Moderator

hydration
Hello Sherri what is a lactated ringers? How is it used? My husband is doing the 5=fu Oxalipatin and Leucovorin. Two hours at Hillman Center and 46 hours with pump at home. This chemo wipes him out for days. With the Oxalipatin it is known to cause neuropathy. Has anyone used 1000mg calicium gluconate and 1000mg magnesium before and after chemo for neuropathy? Hey Sherri did your husband take any pain meds or just the adderall the pain meds put my man to sleep. Thanks for all the love
Chrissy

chemosmoker

lilrusty said:

hydration
Hello Sherri what is a lactated ringers? How is it used? My husband is doing the 5=fu Oxalipatin and Leucovorin. Two hours at Hillman Center and 46 hours with pump at home. This chemo wipes him out for days. With the Oxalipatin it is known to cause neuropathy. Has anyone used 1000mg calicium gluconate and 1000mg magnesium before and after chemo for neuropathy? Hey Sherri did your husband take any pain meds or just the adderall the pain meds put my man to sleep. Thanks for all the love
Chrissy

Ringers and meds and such...
Chrissy,
Lactated Ringers is used for IV fluid replacement when dehydrated and mainly to use an IV for delivery of other IV drugs, such a chemo and pain meds and the like. It is also used to wash out wounds externally as it is sterile.

I have NO experience with the calcium gluconate, although I have had Magnesium, for my heart as it is a very needed chemical in the blood for a healthy heart rhythm. Sherri can probably advise you about those, and others may as well. I have done NO chemo so I leave that to the experts here.

I haven't had to use an Adderall yet, although it has been offered. My energy is fine still. I take massive doses of Oxycontin and Oxycodone (long and short acting) for my pain and have experience with almost every pain med available if you have any questions there.

I wish you all the best and will help in any way possible.

-Eric

pjlee123

Stage IV treatment
My father in law is just starting chemo for stage IV.

I don't recall the all the drug names off hand, but he's getting:

1. One of the cisplatins
2. 5-FU with Leucovorin
3. An experimental anti-angiogenesis drug (tries to block the formation of new blood vessels that would supply the cancer) vs placebo

Chemo is every two weeks. Imaging is at 10 weeks and then every 8 weeks.

No additional meds to deal with side effects -- yet.

Would love to hear from more of you.

Unknown

lilrusty said:

hydration
Hello Sherri what is a lactated ringers? How is it used? My husband is doing the 5=fu Oxalipatin and Leucovorin. Two hours at Hillman Center and 46 hours with pump at home. This chemo wipes him out for days. With the Oxalipatin it is known to cause neuropathy. Has anyone used 1000mg calicium gluconate and 1000mg magnesium before and after chemo for neuropathy? Hey Sherri did your husband take any pain meds or just the adderall the pain meds put my man to sleep. Thanks for all the love
Chrissy

This comment has been removed by the Moderator

json_2011

My mother is on Taxol and
My mother is on Taxol and Cistplatin , and it is very RUFF. She has been through 3 rounds and has one more. Some more test and proly radation. Im glad your husband is doing good. Hope he continous.



Jason

AngieD

json_2011 said:

My mother is on Taxol and
My mother is on Taxol and Cistplatin , and it is very RUFF. She has been through 3 rounds and has one more. Some more test and proly radation. Im glad your husband is doing good. Hope he continous.



Jason

What a good thread, Jackie!
I have been wondering about other Stage IV's treatment also. My husband was diagnosed in late June 2011 and started chemo 7/7. Besides the esophageal tumor, he had near and supra clavicular lymph nodes involvement, so Stage IV. He just finished the 4th round of chemo yesterday and had a PET scan today--prayers going up and fingers crossed--won't know the results until oncologist's apt on Friday.

He was on a 3 week cycle:
Oxaliplatin IV Day 1
Oral Xeloda 4 500 mg pills in am; 3 in pm Days 1-14
Week off then repeat above

He had had some swallowing problems which led to diagnosis and had lost 20 lbs before starting chemo. One week after starting treatment, the swallowing issues disappeared and his weight stabilized. (Heck of a way to get to the weight he'd been aiming for for 2 years!)

He has done pretty well with the chemo. He has had to go in for hydration twice even though he was drinking 8-10 glasses of non caffeine fluids daily. The cold sensitivity, which is a given with the Oxaliplatin, seems to last longer each time. Other than that, fatigue is the only other side effect. He gets Dexamethasone the day of the IV and for several days after in a tapering off regimen. It seems to really hype him up right after the IV, so for several days, he is really energetic. Then when he comes off it, he's super tired for a few days, then gets more energy. He hasn't had any of the hand and foot syndrome, which I guess can happen with Xeloda. He has been using lotion a couple of times a day on his hands and feet. I had read that Vitamin B6 helps with that. I asked the oncologist and she said she usually doesn't prescribe it until it has developed, but it wouldn't hurt to try it as a preventative. So, we've added that. We have also done saline mouth rinses at least 3 times a day, which was recommended to prevent throat and mouth sores, and he hasn't had any.

Thanks for starting this tread! Good information. I hope more will respond!

Angie

LeeinLondon

hi jackie
hi Jackie;

I'm stage IV/mets to liver, dx jan 2011.

I had 3 months of chemo (5FU and oral Xeloda. We saw a small reduction in tumour sizes in May, then a chemo holiday, then a huge increase in tumour size and number of tumours in july. I decided to stop all treatment, and have had nothing except pain management since.

Chemo was so horrible for me that I feared it more than death, and like Eric I didn't want to waste 3 months of my life to gain perhaps a few weeks.

No regrets.

- Lee

sangora

LeeinLondon said:

hi jackie
hi Jackie;

I'm stage IV/mets to liver, dx jan 2011.

I had 3 months of chemo (5FU and oral Xeloda. We saw a small reduction in tumour sizes in May, then a chemo holiday, then a huge increase in tumour size and number of tumours in july. I decided to stop all treatment, and have had nothing except pain management since.

Chemo was so horrible for me that I feared it more than death, and like Eric I didn't want to waste 3 months of my life to gain perhaps a few weeks.

No regrets.

- Lee

Stage IV Also
As much as I have read here, I feel like a lucky stage IV with my treatment. Yes there have been issues. In the beginning I had 5FU 24/7 for 8 weeks no breaks as well as Cistplatin and Eprubisin evrey 21 days from May thru October. I took 4 weeks off the IV drugs in July and went on Xeloda while haveing radiation. I had no energy, and had some problems with dehydration though I was on a feeding tube. Was hospitalized in OCt for a week due to a Epirubsin reaction so no more of that. After the radiation I took a drug holiday for 10 weeks and did great.l Got my energy back and had clean CT scans and was able to eat. In January of 2011 I went on Xeloda 4000 mg. day one week on one week off for ten months. The end of June 2011 while on vacation, I couldn't swallow again, contacted the hospital and was told to come home and to the hospital. Was there ten days. They found a new mass at the site of the original tumor but me back on Xeloda for a few weeks til I could see the oncologist and I went home. A sept. CT scan showed a hot spot in the liver. My tumor count was slightly elevated so we decided to go back to the heavy hitter. A week ago I was started on Taxotere. I am exhausted but other that seem ok. At this point I have been tired for so long I hardly notice it. I live alone for the most part and am able to take care of my self and my 4 legged companion. I go today for weekly blood work to see how I am holding up. Usually I recover well with my blood counts. I was DX in April 2010 and have now lived longer than was originally expected so from that point I see everyday as a gift and enjoy it well. Good luck to you and your husband as you walk this journey with the rest of us. Sam

Tina Blondek

Welcome
Hi Jackie and welcome to you and your husband! I was a caregiver for my dad. He passed away from stage IV EC with mets to the liver in March 2010. I am so happy to hear your husband is feeling better after his recent treatments. That is great news! Sloan Kettering in NYC is one of the best cancer hospitals. You are in a wonderful place! My dad went to Univ. of Virginia in Charlottesville, VA, also a great cancer hospital. Do his drs. mention anything about him being able to have surgery? The chemo treatments will help to shrink the tumor, then surgery is usually performed. 6 Months of treatment sounds like a long time, my dad had 6 weeks of chemo and radiation. My dad was not able to have surgery, due to a past history of heart disease. A positive mind set is most important. You have to stay positive. You have to have faith in God. Remember God did not cause his cancer, God is here to help you both travel this journey and get you through it. Hope this helps. Lean on us anytime. Keep in touch.
Tina in Va

mario33ec

Tina Blondek said:

Welcome
Hi Jackie and welcome to you and your husband! I was a caregiver for my dad. He passed away from stage IV EC with mets to the liver in March 2010. I am so happy to hear your husband is feeling better after his recent treatments. That is great news! Sloan Kettering in NYC is one of the best cancer hospitals. You are in a wonderful place! My dad went to Univ. of Virginia in Charlottesville, VA, also a great cancer hospital. Do his drs. mention anything about him being able to have surgery? The chemo treatments will help to shrink the tumor, then surgery is usually performed. 6 Months of treatment sounds like a long time, my dad had 6 weeks of chemo and radiation. My dad was not able to have surgery, due to a past history of heart disease. A positive mind set is most important. You have to stay positive. You have to have faith in God. Remember God did not cause his cancer, God is here to help you both travel this journey and get you through it. Hope this helps. Lean on us anytime. Keep in touch.
Tina in Va

Quality of Life Seems to be the biggest deal..
I'm so called stage iv and have just started Chemo-was diagnosed in July of this year. I had ten days of radiation with only minor issues in August....

With Chemo so far its been surprisingly okay- into the second week-only fatigue has been an issue. With the anti-nausea meds they give today nausea is not a big issue as what it once was. Have not vommitted at all. I was given a feeding tube soon after diagnoses but have never needed to use it yet. I can eat fine and my appetite is getting better every day. None of the horrible things that was told would happen to me have happened. There is no pain-and I am greatful. I also know that things can turn for the worse as well... But I chose to believe that new treatments and better drugs can make a difference as well as postive mindset.

While I respect peoples choice re: treatment keep in mind Chemo may be hell for some while others can cope with it well. I'm only 33 so perhaps I can tolerate it better. And please keep in mind that there are some remarkable people who become NED after treatment and buck the trend.

I guess it boils down to ones tempermant when faced with this horrible disease--I need to empower myself with positivity and hope. While others need to make peace with it....

jax568

mario33ec said:

Quality of Life Seems to be the biggest deal..
I'm so called stage iv and have just started Chemo-was diagnosed in July of this year. I had ten days of radiation with only minor issues in August....

With Chemo so far its been surprisingly okay- into the second week-only fatigue has been an issue. With the anti-nausea meds they give today nausea is not a big issue as what it once was. Have not vommitted at all. I was given a feeding tube soon after diagnoses but have never needed to use it yet. I can eat fine and my appetite is getting better every day. None of the horrible things that was told would happen to me have happened. There is no pain-and I am greatful. I also know that things can turn for the worse as well... But I chose to believe that new treatments and better drugs can make a difference as well as postive mindset.

While I respect peoples choice re: treatment keep in mind Chemo may be hell for some while others can cope with it well. I'm only 33 so perhaps I can tolerate it better. And please keep in mind that there are some remarkable people who become NED after treatment and buck the trend.

I guess it boils down to ones tempermant when faced with this horrible disease--I need to empower myself with positivity and hope. While others need to make peace with it....

Thank you for the responses
It seems that everyone does indeed respond differently to drugs and treatment. None of us knows what the next day may bring, but to be at peace with decisions we have made we will all handle tomorrow a bit better. God bless and good luck to all the very brave Stage IV people on this board.