Looking for advice

cher76

Hello all. I have only posted once or twice here but I read the posts almost every day. My 54 year old husband, Rickie, was diagnosed with stage IV EC October 8th. He is being treated at MD Anderson in Houston. When he was first diagnosed we were told the tumor was quite large encompassing his whole esophagus. From the reports is says that it "starts at 20 cms and involves the entire length of the esophagus from 20 cms to 40 cms and extends distally into the stomach for about 4 cms to 44cms". There is metastatic involvement of multiple lymph nodes as well as a few "hot spots" on his spine and sternum. Not being a candidate for surgery, the doctors decided to treat with palliative chemotherapy. No other organs are involved that we know of at this time. From what I have read and researched it seems that a tumor this large in unusual. I was wondering if anyone else has experienced this. Although he has lost 90 lbs, he presently weighs around 185 lbs and Dr. Ajani does not think a feeding tube is necessary. He received the first round of chemo, which he tolerated well except for constipation. The chemo gave somewhat mixed results, and so we elected to join a clinical trial for IMC-1121B ramucirumab. In 2 weeks we will have finished 6 weeks on the trial and will have a CT scan to see how he is progressing. If it is getting worse we will discontinue it and try something else. We know that this is not curable, but we hope and pray for time.
The last few days have been difficult as he was having a lot of pain in his back. They upped his pain medication which seemed to help. Yesterday we had a scare as his blood pressure (which is usually somewhat high) dropped. We visited our oncologist in our hometown and he administered IV fluids yesterday and again today as well as iron. Rickie has always been one to drink lots of water during the day and has continued to do so. He also drinks gatorade. We know that all the meds cause constipation and he is suffering through a severe case of it now. Does anyone have any experience with this either? He takes Miralax daily but nothing seems to be helping at this time. Since the chemo he has been able to eat fairly well, however he has developed alot of clear mucous lately that usually comes up with the first few bites of his meal. Our doctor at MD Anderson has not really given us any indication on the progression of the disease. I know in so many of the stories I have read the liver has been involved and at this time my husband has not had that. I guess I am just concerned that it is getting worse and feel that no one there wants to put that out in the open. We are trying to stay positive but it is difficult. It's amazing how your world can be turned upside down so quickly. As I said we pray for time; time for us as a family, time for new developments in medications, and time to understand.

paul61

IV Hydration was helpful for me
Cher,

When I was receiving chemotherapy my blood pressure was consistently low. Prior to chemotherapy my blood pressure was slightly high. But something about the chemotherapy drugs changed that radically. At times when I would take my blood pressure in the early morning I would get pressures like 90/60 and a couple times even 80/50. I also had issues with dehydration.

I found that getting IV hydration three days after my infusion helped me considerably. I still continued to have low blood pressure but not at the extremes I did without the hydration.

Once I finished chemo things went back to normal.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

cher76

paul61 said:

IV Hydration was helpful for me
Cher,

When I was receiving chemotherapy my blood pressure was consistently low. Prior to chemotherapy my blood pressure was slightly high. But something about the chemotherapy drugs changed that radically. At times when I would take my blood pressure in the early morning I would get pressures like 90/60 and a couple times even 80/50. I also had issues with dehydration.

I found that getting IV hydration three days after my infusion helped me considerably. I still continued to have low blood pressure but not at the extremes I did without the hydration.

Once I finished chemo things went back to normal.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Thank you for the reply.
Thank you for the reply. Today his blood pressure seems to be back to normal (what is normal for him anyway). The IV infusions did seem to help with that. Now he is dealing with a bloated stomach that I think might be form the constant hiccups. Sometimes they are so bad they come 5 or 6 in rapid fire succession and he makes an almost whooping sound. I think he is swallowing a lot of air. Hopefully this will settle down.
Again thanks for your input,
Cheryl

unclaw2002

Cher,
You may have already
Cher,

You may have already done this, but you may want to have new blood work drawn so they can check Rickie's blood work to see what is going on and if he needs some additional medications. If his levels are low and he might need some iron supplements. This could be the cause of some of his fatigue and perhaps if he isn't taking an iron supplement he may want to ask his doctor if they would recommend a supplement.

Good luck with the scan in a couple of weeks. Hopefully the cancer will be stable and you can continue on the trial.

Lots of hugs and prayers,
Cindy

Tina Blondek

Welcome
Hello Cher and Ricky
Welcome to our ec discussion board as well as our ec family! Sorry to hear Ricky is having the trouble with the constipation. This also happened to my dad. The constipation is probably being cause from the pain medication. My dad was prescribed a liquid laxative called lactalouse. He was told to take 2 tsp. daily. This did work, as long as he took it. You might want to ask about changing his laxative med. Just try your best to go with the flow, take it one day at a time, and cherish each and every moment you have with him. Since he is inoperable, the chemo will just shrink the tumor (hopefully), not cure it. This is called palliative care. It is just prolonging his life. So, live each day to the fullest. From what I have learned MD Anderson Hospital in Houston is excellent. Take care of yourself, make sure you get some "me" time. Keep in touch.
Tina in Va

paul61

Some here have had good luck with Thorazine for hiccups
Cher,

I do not have personal experience with this but a number of people in our EC family have suggested that the medication Thorazine has been helpful in dealing with hiccups. It may be helpful to discuss this with your oncologist.

Regards,

Paul Adams
McCormick, South Carolina

dennis44

Try this for constipation
My mom suffered from severe constipation and when all else failed we used a flavored magnesium citrate. This comes in a bottle and can be purchased at Walgreens. About six ounces always worked for her. If you have any questions let me know..

JERRY GOODMAN

CHER, I HAD THE SAME AND BEAT IT
CHER I USED A HERBAL TREATMENT, NOT CHEMO IT WILL KILL YOU. I WAS GIVEN 8/12 MONTHS TO LIVE AND I BEAT, 5 MONTHS LATER I WAS DECLARED CANCER FREE. WHEN I WAS TOLD ABOUT THIS TREATMENT I TO WAS DOUBTFUL, BUT THEN I SAID WHAT DID I HAVE TO LOSE,OUR MOST PRECIOUS GIFT, LIFE. SO I USED THIS AND I TRULY KNOW I AM HERE TODAY BECAUSE OF IT , SO YOU ARE WELCOME TO CALL ME , @925- 292-9402 OR 925-525-3300 THERE IS ALSO A DOCTOR IN CANADA THAT WILL TREAT VERY TERMINAL CASES . HE ALSO HAS GREAT SUCCESS AT HIS TREATMENT. YOUR FRIEND JERRY GOODMAN

Unknown

JERRY GOODMAN said:

CHER, I HAD THE SAME AND BEAT IT
CHER I USED A HERBAL TREATMENT, NOT CHEMO IT WILL KILL YOU. I WAS GIVEN 8/12 MONTHS TO LIVE AND I BEAT, 5 MONTHS LATER I WAS DECLARED CANCER FREE. WHEN I WAS TOLD ABOUT THIS TREATMENT I TO WAS DOUBTFUL, BUT THEN I SAID WHAT DID I HAVE TO LOSE,OUR MOST PRECIOUS GIFT, LIFE. SO I USED THIS AND I TRULY KNOW I AM HERE TODAY BECAUSE OF IT , SO YOU ARE WELCOME TO CALL ME , @925- 292-9402 OR 925-525-3300 THERE IS ALSO A DOCTOR IN CANADA THAT WILL TREAT VERY TERMINAL CASES . HE ALSO HAS GREAT SUCCESS AT HIS TREATMENT. YOUR FRIEND JERRY GOODMAN

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sandyjaa

unknown said:

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Jerry Goodman?
I am "with" you on this, William. Interesting that he just joined a few days ago. I would also like to know allllll about the magical herbs he speaks about.

sandyjaa

sandyjaa said:

Jerry Goodman?
I am "with" you on this, William. Interesting that he just joined a few days ago. I would also like to know allllll about the magical herbs he speaks about.

Correction
He just joined TODAY????