WWTBAM Bored

Not to hijack Marley's thread, I thought I'd start my own. I am also in need of some cancer related information from those of the doctorly persuasion...

My mom's ex fiance - let's just call him Don - it's his name and a lot easier (they were together from the time I was in 6th or 7th grade, through after I got out of college, he lived with us, she just didn't want a 3rd marriage so they were "engaged") has recently been diagnosed with esophageal cancer. He doesn't like to go to the doctor, so he doesn't. Apparently he started to notice in June that he couldn't keep food down. By Thanksgiving, he still hadn't done anything, and sat at dinner unable to eat. He thought he had some weird bug or something. My mom dragged him to the hospital the following week, and found out that there was a large tumor blocking the esophagus - it wasn't that food was coming back up because of a stomach issue, it was never able to get past the tumor.

Since then we've had ups and downs. He's been in and out of the hospital. First they put the feeding tube into his intestine, assuming that they might need to operate on his stomach at some point to get the tumor out. Then they realized that was ridiculous because the nutrients needed to be absorbed so slowly that way, it wasn't feasible for someone not on 24 bed rest (he was supposed to be going for chemo by that point). So back into the hospital to move the feeding tube to the stomach.

All of this, plus the cancer, has left him so weak, he started chemo but they had to stop it because they said his body couldn't handle it. They are doing aggressive radiation (5 days/week, it's been 4 or 5 weeks so far) but it doesn't seem to be helping. They won't say if it's getting better or worse, the only thing that they will say is they can only do the series of radiation treatments once.

So I've looked this up online and it doesn't look good. I'm just wondering if anyone knows, are there any other treatments that might be of use? Or is it just after radiation, he's either going to get better or he's not? He still is unable to eat solid food so I'm guessing the tumor isn't shrinking, at least not enough. I didn't realize how aggressive and deadly this type of cancer was, poor guy doesn't seem like he ever stood a chance. But without hope for any further radiation, and unlikely on chemo or surgery, what next??

Oh and I forgot to mention, he's not even 50...he will turn 50 on March 3rd and since my Dad died almost exactly one month before his 50th birthday, I am a neurotic mess right now.

I don't have any expert advise to offer.

But I have some {{{{{hugs}}}}}

I know nothing, except that warm, good thoughts are headed toward Don, your mom, and you. Hang in there.

Sending you good vibes and prayers from here, too.

The only things I know are from a man who used to come here to hunt before he got sick. None of what I know about his illness (the same type of cancer as Don's) will be helpful to you.

You and Don and your mom have my good thoughts.

I'm so sorry, Sunflower.

I don't know of anything helpful either. Best wishes to you and your family.

Just hugs and prayers from here, Sunflower.

t.

Thanks to all who have expressed nice thoughts...

I was hoping for something the doctors hadn't told us, something that might give a chance. But now I guess in the absence of that, I'll go back to hoping for a quick journey through this for him. My dad suffered for a year and a half before he passed away and not only do I not want to watch someone else I love go through that, I don't want him to go through any more pain than he already has. I think there is something very upsetting/demoralizing about not being able to eat solid foods, or any foods for that matter. Once he got beyond even being able to get down stuff from the blender, he seemed like he started to give up. I obviously don't know what it's like to be in this situation, but it doesn't seem like a good quality of life, when the best possible survival rates they can give us are 3 - 5%. So I just pray for the least amount of suffering, for all of us. Is that selfish to include myself in that?

I'm sorry to hear this. I hope something can be found to ease his pain & to get nourishment into him. And shrink the tumor, if at all possible.

All I remember from class last summer is that this one tends to suck because it is diagnosed late in stage, because it doesn't occur to people it could be cancer, so they don't see a doctor very early. It is also more prevalent in African-Americans, which we hypothesized were even less likely to see a doctor due to the Tuskegee syphilis research only a generation ago.

So I have little info for you, but it is always good to seek support groups of patients and families of patients experiencing the same thing. Good luck.

Did the doctors discuss a pic line that can put into his arm and he can get nutrients that way?

No medical information from me either, but I join others in wishing Don, your mom and you
strength and hope, both of which are needed and hard to come by at times like this.
It doesn't hurt to get 2nd opinions, if that's feasible and insurance will pay.

So sorry to hear about this.

However, dont give up hope yet. Check out some alternative health remedies. Laetrile comes from apricots and has shown great tumor-reducing effects. As I told Marley, the acai berry thing shows lots of promise, as does certain homeopathics.

Please search all these things yourself and see what you come up with. There are many MDs who are into homeopathy with sites online to peruse.

Good luck!

Ritterskoop wrote:All I remember from class last summer is that this one tends to suck because it is diagnosed late in stage, because it doesn't occur to people it could be cancer, so they don't see a doctor very early. It is also more prevalent in African-Americans, which we hypothesized were even less likely to see a doctor due to the Tuskegee syphilis research only a generation ago.

So I have little info for you, but it is always good to seek support groups of patients and families of patients experiencing the same thing. Good luck.

Yeah and that's what happened here...it started it June and it just gradually got worse, but he thought it was reflux or a bug or food poisoning or even a parasite. He never thought it was cancer...and he's not a doctor kind of person. I am a doctor kind of person, to the point where they sometimes laugh at me for going too much, but that's my way, I figure the more I'm in there, the more likely they are to find something serious in time.

The support group is a good idea, I will have to ask at the cancer center, I'm sure they have them there...thanks

geoffil wrote:Did the doctors discuss a pic line that can put into his arm and he can get nutrients that way?

I'm not sure what that is? When he was in the hospital, he had an IV with some kind of nutrients going, but for home they said the feeding tube was the way to go. Is this something that can be used at home? Is it better than a feeding tube?

sunflower wrote:

geoffil wrote:Did the doctors discuss a pic line that can put into his arm and he can get nutrients that way?

I'm not sure what that is? When he was in the hospital, he had an IV with some kind of nutrients going, but for home they said the feeding tube was the way to go. Is this something that can be used at home? Is it better than a feeding tube?

I don't play a physician on TV but I am one in real life. However I am an ophthalmologist by training, a researcher in epidemiology in my primary day job and have no cogent advice to offer on cancer treatment. It is a complex and constantly changing field that I could not begin to speak competently on (and why I did not comment in the other thread).

I can say that a PIC line ("Peripherally Inserted Central" line) can be used at home to provide nutrition (TPN or total parenteral nutrition), chemo or other medications for an extended period of time with less risk of complications than a standard IV. Typically it is not a long term solution but they have been used at times for many months if necessary and kept free of infection. By giving nutrition IV it allows one to bypass the usual digestive tract. In this case since his digestive tract is intact from the stomach on perhaps a feeding tube was felt to be more appropriate/effective. But if he has gotten weak from the cancer as well as ongoing treatment perhaps he is not digesting food well any more and this might be an option.

They are typically inserted in the chest wall and threaded down to the vena cava if memory serves and require regular care to prevent infection, especially in a cancer patient who is immunosuppressed.

Update:

He is still losing weight using the feeding tube, and it has switched back to the IV like device going straight into the intestine. I don't know the technical terminology, but I know there is some type of pump device that has been delivered, and he must use it for 12 hours while reclining, but not laying flat, every day.

He also took up a new hobby yesterday. Chewing foods he likes to get the taste and then spitting them out. My mom found out about that when she came home yesterday and thought the cat threw up on a plate, but then found out the real story (the cat couldn't have eaten that much!). It's weird and kind of nasty, but if it helps his morale, I'm all for it.

He was also unable to get radiation yesterday, because his white blood cell count was too low. They gave him some type of shot and want to see him again today. I don't know what that means, and I'm getting it 3rd hand. I much prefer the days I can be there to hear it from the doctor's mouth! But apparently there are only 5 radiation treatments left (theoretically, could happen in the next week since they're supposed to be every day)...and then they are going to try to do chemo once a week if he can tolerate it, but so far that has been a no.

PS If I haven't said it, thank you all for your input and support. You don't even know how it brightens my mood - if only for a few minutes - to know that people out there care enough to say a few kind words or offer advice. It means the world to me. Also thank you to those of you who have sent me messages on Facebook, that I am all too slow in responding to!

I had a PIC line because of severe morning sickness. A chem 27 blood test is done to determine what a person needs in terms or vitamins or nutrients. The fluids contain a specific mixture of nutrients needed based on the blood test. The test determines what nutrients and vitamins that were too low a level and they added that to the fluids. The line is inserted in the inside elbow and threaded up thru to a vein near the heart (or by the heart). It made me feel so much better and gave me more energy. The care was easy, a hep shot into the line after each bag and twice daily cleaning by the elbow. It can't get wet and it was covered by tape and a visiting nurse came by twice a week to check it. The nutrition can be adjusted to be given in 12 hours or 24 hours. I also had to get tested every day for sugar levels. I think that was only because I was pregnant. I would definitely recommend it. Very little risk and lots of benefits.

geoffil wrote:I had a PIC line because of severe morning sickness. A chem 27 blood test is done to determine what a person needs in terms or vitamins or nutrients. The fluids contain a specific mixture of nutrients needed based on the blood test. The test determines what nutrients and vitamins that were too low a level and they added that to the fluids. The line is inserted in the inside elbow and threaded up thru to a vein near the heart (or by the heart).

Ah yes, that is the "peripherally inserted" part. I was thinking of a Central line that is normally inserted in the upper chest and not the arm. Similar purpose but different insertion points.

He probably got a shot of Procrit which helps increase the red blood cell production, but
it may have been something completely different. My dad would get Procrit injections when he
was having radiation.

How's your headache today?

I'm so sorry to hear of all he's going through, Sunflower. Hope you all stay strong.

I've had both a pic line in the arm for easier administration of IV fluids, and also a "Port-a-cath" inserted into the upper right chest for easier administration of medications (commonly used with chemo). Neither were painful, and both made life a lot easier.

Sending healing and positive thoughts.