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My Dad

alf5176
Posts: 1
Joined: Aug 2012

Hi There,
My parents live in NY and I in Chicago. He is being treated at Strong Memorial Hospital (Rochester, NY) and his physicians are Dr. Tijani (spelling?), and Dr. Peters. (FYI- my father is 74 years old, until this has been in good health, other than the fact that he is a lifetime smoker)
The past several months have been a roller coaster. My dad has been through countless tests, scans, scopes, etc. He was initially diagnosed at the end of November of last year. It took time to determine that he was Stage 4 with some EC that had spread to his lungs. He went through a series of radiation and chemo where he went daily for radiation and weekly for Chemo. He did this for 6 weeks or so. He was unable to get his last chemo session in because his platelet count dropped too low. This brings us to the beginning of last April. Once the chemo and radiation was completed they had to wait a certain amount of time before new scans could be done. When the new scans came back the outlook was very positive. The cancer in his lung was gone and the scope came back negative. At this point he was doing very well. He even came to Chicago to be with us for my son's First Communion in April. He then traveled to Florida to visit with my brother in May. He seemed to finally be able to eat again. Things were looking up.
My family visited my parents in NY for the first week of July. I saw a notable difference in my dad during this visit. I could tell that he continued to lose weight, and he had a very difficult time swallowing. He would often run for the bathroom during meals and all that would come up would be stomach acid. My parents had said that the doctor had encouraged a stint in the event that the swallowing difficulty increased. My husband and I encouraged him to see if he could get that stint. It seemed like a good idea. It was painful to see my dad struggle so much. The following week my dad spoke to his physician and he had a stint placed shortly thereafter. Life has become increasingly more difficult since. Apparently, the cancer is at the junction of the stomach and esophagus. The stint was placed in a way to hold the esophagus open and to open the path to the stomach. This sounds good in theory, but now anything my dad eats causes a terrible burning sensation from his stomach all the way up to the base of his throat. There is no longer a valve available to close the stomach acid from coming up his esophagus. The food will now go down (sometimes), but he doesn't want to eat for fear of the repercussions. At other times anything that he tries to eat gets "stuck". My dad always weighed in the ballpark of 200 lbs. He has now reached 144 lbs. The doctor fears that the tumor has grown and that is why he is having the increased difficulty. Apparently now, with the stint they usual PET and CAT scans will not show the tumor growth. It can only be done with a scope. This was not made clear to them before the stint was placed, because perhaps those scans should have been done before the placement. My dad has received no "official" treatment since that initial round of chemo and radiation that ended last March. Finally, his platelets are at an acceptable level, but now the doctor fears that he would not be able to tolerate chemo because he is too weak (based on his weight). My parents have asked if the stint could be removed to alleviate the reflux problem. The physician that they met with today said that he would have to think about that over the weekend. They are strongly encouraging a feeding tube. It seems that he has 2 choices: 1) get a feeding tube, increase his body weight, and start a round of chemo with hope that things will improve, or 2) do not accept treatment. Neither alternative seems very positive. Not to mention that it seems that no further decision will be made until their next appointment in 2 weeks! UGH!
Another issue that has come up is with a supplement. My dad has been drinking Mighty Shakes Plus (Made by Hormel). They are not readily available. My mom, works at a nursing home and was purchasing them at cost from the kitchen there. She was just told that they can no longer sell them to her. Does anyone know where these can be purchased? Does anyone have a suggestion for a substitution?
Does anyone have a suggestion for a medication that would help with the reflux issue that my dad is experiencing? I believe that he has been on Previcid and Paxil- neither of which seem to be helping much
My dad has also been put THC to stimulate his appetite, he's on an antidepressant, and now he is on a pain killer.
Has anyone heard of removing a stint once it is placed? My husband brought up a concern that the tumor has probably grown around it and that moving it may be unsafe. Does anyone have thoughts on this?
Another unusual thing is that for my dad the reflux is worst during the day when he is up and around. At night, when lying down it seems to get better. Is that normal?
It is really bothering me that my dad has not received more treatment. It feels like so much time goes by and we just wait and wait for another appointment, where very little is learned. Is it common to wait so long between rounds of treatment? Is it true that the only thing that can increase a platelet level is time?
Based on your experiences does this scenario offer a lot of hope still? At the beginning of this all, surgery was the big hope. Now that has pretty much been removed as an option. He is really suffering. I hate to see this! I live so far away and have 3 young children. I am unable to be there as much as I'd like, and all of my information is 3rd hand. I feel for my mom, who is trying to be upbeat, positive, and supportive, but she is also really struggling with the whole situation. Is it better for him to get the feeding tube, try to gain weight, and attempt more chemo to try to "control" the cancer, or is it better to attempt to stay comfortable for as long as possible? I once thought that the answer to that question was obvious... now I'm not so sure. The final question I have is one that physicians do not seem to give an answer to anymore.... can anyone, based on their experience, guess on how long my dad has to live? I know
there are so many variables to consider, but things just feel like they are bad...

Any words of advice or suggestions would be so very much appreciated,
Anna

Aussiegirl76
Posts: 15
Joined: Aug 2012

Hi Anna. I am new to all of this so may not be much help with medical side of things. But I also am trying to support my parents as my dad battles ec. I also have 3 children and have other family living far away. My dad is only a few months into treatment but has v low platelets and has a number of issues including weight loss. I think he has lost 20kg, 44lbs, and half of that in last few weeks. And he has his cancer at the junction of stomach and esophagus and has terrible trouble eating. He is on numbing/ oral pain medication which allows him to eat 5 mins after taking it. I am sorry to hear that your dad does not seem to be getting the kind of medical care you need. Maybe others on here can recommend other docs that can give him a second opinion.
I just wanted to send you my best wishes and hope that things get a lot better for your dad.
Stay strong xx

mmr19
Posts: 88
Joined: Feb 2010

Welcome. Sorry to hear of you Dad's battle with EC, but you have come to the right place to find answers. The people on this message board have a wealth of information through research and (unfortunately) experience. Though each patient is different and their treatments and reactions to treatments are different, there is much to gain from hearing of what others experience.

My husband is also stage 4, inoperable, and though he does not have a stent, I can't offer any insight to that. He did, however, continue to have problems eating for 10 months following diagnosis and relied on a nutrtional supplement called Nestle VHC (Very High Calorie). It has recently been changed to Boost VHC. It has 22g of protein and 530 calories. Unfortunately, it is only sold online. I was able to purchase through Amazon and Walgreens websites. It was recommended that Lou have an intake of at least 100g of protein and 2000 calories/day to help build him up. Even more is better. Of course, as you will hear from others, a j-tube is highly recommended for nutritional input. My husband would not consider it.....stubborn man (but has his reasons).....though I begged him to after reading here the positive results. I do think it would have been better for him. But I was thankful to find the supplement.

As far as low platelets, we have been told also that only time could bring them up. Though it usually was only an extra week or two and they would be high enough to continue treatment.

So sorry this disease has invaded your family. I'm sure it's hard for you to be so far away from your Dad. But I hope you can find some answers and suggestions here. It is a place of warm caring people who will open their arms and help you sort it all out.

Thoughts, prayers and best wishes-
Marta

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

I'm glad you've chosen to post here. I find THIS site more effective than ACOR, but I continue to use both. I hope you will find the help you seek. It helps to have a lot of support.

~Jayme

Gail4beagles's picture
Gail4beagles
Posts: 15
Joined: Aug 2012

Hi Anna,
I too am new to this site. My brother has EC as of 7/13/12. He is currently in the hosptial to get a feeding tube placed. It is vital to keep nutrician and fluids into our bodies. This is important to a healthy person and more so for someone fighting EC. My brother has lost 30 pounds. He agreed the only possible way to move forward was to get a feeding tube. If your body is weak you have few options. EC is an ugly agreasive cancer.

I have done hours of research and the opinions on this site seem to be againt a stint, for the reason you mentioned your Dad is already seeing and that the tunor could grow into the stint. I think he needs to be tested for Her2 gene and see if Phoyodynamic Therapy is an option to make him more comfortable. It freezes and shrinks the tumor if there is no option for surgery. Prilosec and Nexium are good to help with the acid refux. It takes days for them to work, but they might help some eventually.

I am learning all of this as I go. I am 3 1/2 hours from my brother and I know how helpless you feel when you are not near your loved one. I have tried to go to each oncology appointment armed with my questions.

Hold on to hope and know you and your family are in my thoughts and prayers.
Gail

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

I don't know if a stent can be removed especially if the tumor has grown in the stent, but enough people on this site have had bad experiences so I would never allow one to be placed in my mother. I hear they can do esophageal stretches and people typically opt for that versus having a stent placed. I hope your dad's stent can be removed. I just heard too many negative things about them and think it could cause more trouble and pain down the line for your dad. I hope someone on this site has experience with stent removal and can give you some good advice there.

My mom has a J-tube for feeding and I truly believe that that is the best thing that she could've received. She stage iv but initially she got the J-tube when she was diagnosed at stage III. She was diagnosed in November and since she had that J-tube placed she has not lost any weight. This is a godsend especially with the person with esophageal cancer who cannot eat. She's been able to maintain good nutrition and hydration which is very important. Like others here I totally recommend the J-tube for your dad. Once he has the J-tube he will also get a prescription for the nutrition and that typically is concentrated and in high calories. The J-tube runs on a pump during the evenings usually when the patient is asleep so you get all your nutrition needs met whether you are able to eat during the day or not.

As for the reflux my mom is on Omeprazol. She has also chosen to do chemo for now although the long-term effects are starting to get to her. Unfortunately for the majority of stage 4s there's really no other course of treatment other than chemo. Many hospitals don't even offer radiation to stage iv patients unless it is palliative radiation to shrink a tumor. And once you're diagnosed as stage iv that's all you have left is palliative treatment; no chance for surgery and a cure. So really right now my mom's situation all we do is manage the side effects from the chemo and make sure she gets her hydration and tube feedings. But on the plus side she's been able to maintain decent quality of life for much longer than I thought she would. She's in good spirits and she fights on.

Anna, I hope you get the advice you need especially with that stent. I wish you and your dad the very best. We all know how difficult this journey is. Just remember you're not alone; we're here to help. That's what we do here...help each other the best we can.

Hugs, Stephanie

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