update on Lee
But, I will first give an update on Lee. We felt that the diluadid was causing his severe sweats and cold flashes, so they switched him to oxy contin last week. This seemed to help, and Lee had a few sweat free days. He has been regularly coughing up his liquids and sometimes his pills have not been staying down. This morning he coughed up his oxy contin from last night which was stuck in his esophagus all night. We called the palliative care team, and they scheduled us to come in today. They have decided to give him the fentynal patch, with liquid diluadid for breakthrough. (fingers crossed)
While we were there, they noticed that Lee's left foot was fairly swollen, and sent him for an ultrasound to check for blood clots. Fortunately the test was negative, but no explanation was given for the swelling.
But most importantly, Lee is finally being sent for an endoscopy and an esophageal stretch. We asked for one previously, and were refused, but now they seem to think he's 'ready' for one. I know they have their complications and risks, but it would be wonderful if he could eat something, anything!! Or even just be able to get his liquids down. We will be having it done on Thursday. He has not eaten anything by mouth in over a month now. I have visions (foolishly probably) of having a turkey dinner for our Canadian Thanksgiving this weekend. Wouldn't that give me something to be thankful for!!!
I guess overall, the last little while has been pretty crappy. The almost constant spitting up and lack of sleep is catching up. Lee is fed up, irritated and sad. He asked today about anti depression meds, and the doctor wants to run some tests to determine if it may be a hormonal imbalance causing his emotions.
Be well my friends, and thanks for listening, as always!
Chantal
Comments
-
Glad you posted!
I've been worried about you and Lee, Chantal! I'm so very glad that you've posted. and exceptionally glad that Lee's scheduled for a stretch! Like you, I can hope that it does give you the chance at a turkey dinner for Thanksgiving ;-) Maybe a turkey cold cut would suffice? If that doesn't work, make Lee at least sound a turkey call. He's got to be involved with the bird some how!
iPads are great traveling companions, but not so wonderful for forum work. I do understand! I tried it for a few weeks last year. Decided it would make a better DVD player for the kids than a forum "laptop" for me, so it went back to the boss instead.
Hope the fentynal patch works well for Lee. I can't imagine having a med just "stuck" overnight. Hope that the foot swelling goes down and doesn't return.
Peace & hugs to you both!
Terry0 -
Sending my best
Chantal and Lee,
I have an ipad as well and do most of my reading on there - as you do. Sometimes I get to my laptop when I have an opportunity to type on a full keyboard
Hence my few posts . .
I will continue to pray for comfort for Lee, I had suspected that Lee was less than good by the decreased number of posts from both of you. I pray for you as well, as I completely understand how difficult it is to watch your strong, healthy husband be beat down by this ugly disease. Kevin has had a crappy month as well. Previous to diagnosis, he worked out at the gym 4-5 days a week, had very little body fat - coached 2-3 of my kids sport's teams - a picture of health. This disease has beat him down with pain, no appetite, he has lost 25+ pounds, nausea, constant abdominal discomfort. It is painful for them and for us to watch. My prayers of comfort and support to both of you . . .
Sincerely,
Whitney
wife of Kevin
stage IVb0 -
PrayersWpturner05 said:Sending my best
Chantal and Lee,
I have an ipad as well and do most of my reading on there - as you do. Sometimes I get to my laptop when I have an opportunity to type on a full keyboard Hence my few posts . .
I will continue to pray for comfort for Lee, I had suspected that Lee was less than good by the decreased number of posts from both of you. I pray for you as well, as I completely understand how difficult it is to watch your strong, healthy husband be beat down by this ugly disease. Kevin has had a crappy month as well. Previous to diagnosis, he worked out at the gym 4-5 days a week, had very little body fat - coached 2-3 of my kids sport's teams - a picture of health. This disease has beat him down with pain, no appetite, he has lost 25+ pounds, nausea, constant abdominal discomfort. It is painful for them and for us to watch. My prayers of comfort and support to both of you . . .
Sincerely,
Whitney
wife of Kevin
stage IVb
Prayers to you Chantel and Lee!
Carolyn0 -
My heart aches for you and Lee
I do hope you are able to celebrate this weekend and that the stretch comes with no complications. I think that Lee’s new profile picture of you two is adorable. Somehow you are both able to muster contagious smiles. May you both find the comfort a break from pain and the ability to eat can bring.0 -
Praying the stretch goes
Praying the stretch goes well, and Lee will be able to eat turkey on thanksgiving.
What difference does it make if the depression is an imbalance, he still needs something to take the edge off. My doctor was concerned about my state of mine from the very beginning and wanted to make sure I had something if needed. I guess doctors are just different.
Please let us know how the stretch goes. I am NED but still have to have stretches.I'm starting to need one now, but will put it off until it is absolutely neccessary.
Praying lee will feel better after thursday,
Sandra0 -
Fentanyl Patch
Hi Chantal,
I was wondering about you and Lee too so I'm glad you posted on here. My husband has a Fentanyl Patch 25 mg with liquid oxycodone for break through pain. Between the two of them they seem to be keeping the pain pretty well at bay. I hope the same holds true for Lee. I will pray for good results from the stretch or stent - which ever they decide on. From what I hear, the stretch has fewer complications that a stent but I'm sure they'll do whatever they feel is best. Take care of yourself too.
Rita0 -
Keeping hopes up
Hi Chantal and Lee,
Hoping that the stretch will offer the relief Lee needs. It's a big deal to be able to swallow. I know that Steve was very relieved when he opted for the stent and he could drink and eat again. It made such a difference in his emotional well-being, too.
Dilaudid made him sweat a lot, too. Though I seem to recall he sweat a lot with the morphine, too. He liked his air conditioning to be sure
I know it sounds silly, but try to watch light programs on TV. We found we really enjoyed "All Creatures Great and Small" which we had on DVD (BBC TV). It was a heartwarming family favorite for us and it really helped with our emotional well being to enjoy it together. (Yorkshire veterinarian in pre-WWII--great stories).
Think of you two daily. Peace and good thoughts going your way,
Jo-Ann0 -
Chantal, I too am posting on
Chantal,
I too am posting on my iPad, and it is definitely pain. But I can sit up in bed at night and read posts and occasionally I will post. I have discovered I need to copy everything before I post as I have lost many a posting that way.
We seem to be having lot of the same troubles this week. Rickie wears a 100mg fentynal patch and takes hydrocodone for breakthrough pain. We needed a refill so we had to have a whole new prescription because it is a controlled substance. Not a problem, our oncologist wrote one and I had the pharmacy there fill it. Well we get them home and they are a different brand than the ones I got at CVS, and administer the drug differently. These are made by Watson, and are a gel type patch. The gel is in the middle and the adhesive is around the edges. The previous ones were totally adhesive patches with time released medication on the surface that you adhere to the skin. we put the new one on yesterday and by the afternoon he started itching under the patch. By this morning it was driving him crazy so when we went in for hydration today we asked if we could get the other brand. Well, long story short, the insurance would not approve another refill yet, so now I have to have it appealed. In the mean time he is trying to wear the new brand. The pharmacist suggested he try some Clariten to help with the itching. Hopefully they will approve the other brand soon. So be careful that you always get the brand that works best for Lee.
We also went yesterday to the GI doctor and scheduled a stretch for Thursday. He got a small piece of meat stuck Sunday evening and could not get anything to go down until Monday morning (hence the dehydration I think). I really wanted him to have this done in Houston, but he wants to be here at home. After our last experience with it I am a little concerned. As I told Rickie, this doctor has not treated but one other EC patient, and we don't even know if he did a stretch on that person. A retired thoracic surgeon we know told us that it should be done as often as once a month so that the esophagus does not tighten up too much before the next stretch. We have been told that as the cancer progresses the esophagus gets hard and loses it's elasticity. Last time he started bleeding several days later and ended up in the hospital with a small crack in the esophagus. So I am hoping this attempt is more successful. He has gotten to where he is eating very little but soups and pinto beans, and his weight was down to 132 lbs. this morning. This time I think we will take it a little easier with eating for several days after the procedure.
I hope all goes well for Lee this week and he can get some relief. Has he managed to keep weight on just using his feeding tube? It doesn't really seem to help Rickie with the weight issue. He just can't seem to get more than 3or 4 cans down a day, and less than that if he eats by mouth as well.
Take care and know you both are in my prayers,
Cheryl
I hope all goes well for0 -
Thanks everybodycher76 said:Chantal, I too am posting on
Chantal,
I too am posting on my iPad, and it is definitely pain. But I can sit up in bed at night and read posts and occasionally I will post. I have discovered I need to copy everything before I post as I have lost many a posting that way.
We seem to be having lot of the same troubles this week. Rickie wears a 100mg fentynal patch and takes hydrocodone for breakthrough pain. We needed a refill so we had to have a whole new prescription because it is a controlled substance. Not a problem, our oncologist wrote one and I had the pharmacy there fill it. Well we get them home and they are a different brand than the ones I got at CVS, and administer the drug differently. These are made by Watson, and are a gel type patch. The gel is in the middle and the adhesive is around the edges. The previous ones were totally adhesive patches with time released medication on the surface that you adhere to the skin. we put the new one on yesterday and by the afternoon he started itching under the patch. By this morning it was driving him crazy so when we went in for hydration today we asked if we could get the other brand. Well, long story short, the insurance would not approve another refill yet, so now I have to have it appealed. In the mean time he is trying to wear the new brand. The pharmacist suggested he try some Clariten to help with the itching. Hopefully they will approve the other brand soon. So be careful that you always get the brand that works best for Lee.
We also went yesterday to the GI doctor and scheduled a stretch for Thursday. He got a small piece of meat stuck Sunday evening and could not get anything to go down until Monday morning (hence the dehydration I think). I really wanted him to have this done in Houston, but he wants to be here at home. After our last experience with it I am a little concerned. As I told Rickie, this doctor has not treated but one other EC patient, and we don't even know if he did a stretch on that person. A retired thoracic surgeon we know told us that it should be done as often as once a month so that the esophagus does not tighten up too much before the next stretch. We have been told that as the cancer progresses the esophagus gets hard and loses it's elasticity. Last time he started bleeding several days later and ended up in the hospital with a small crack in the esophagus. So I am hoping this attempt is more successful. He has gotten to where he is eating very little but soups and pinto beans, and his weight was down to 132 lbs. this morning. This time I think we will take it a little easier with eating for several days after the procedure.
I hope all goes well for Lee this week and he can get some relief. Has he managed to keep weight on just using his feeding tube? It doesn't really seem to help Rickie with the weight issue. He just can't seem to get more than 3or 4 cans down a day, and less than that if he eats by mouth as well.
Take care and know you both are in my prayers,
Cheryl
I hope all goes well for
Thank you for your support everyone. As I sit here at 4:52 AM, having woken up for about the 6th time tonight, I can honestly say I will pay practically anything for the sensation of drinking a large glass of liquid and not choking on it. Truly.
I have spent weeks taking tiny sips of water and juice and although pleasurable, most of it gets stuck and it feels scary.
I'm not too concerned about turkey, but to be able to gulp something cold would be so incredible I can't fathom it. If I can spend thanksgiving gulping juice and pop I would be a happy man!
Today was stressful but my lovely caregiver once again made it bearable. I have a big fat foot for no apparent reason, the fentanyl patch seems to give me at least 80% coverage so far, and the stretch sounds daunting but hey what other choices do I have?
If I am to get any good news at all, I will be incredibly pleased to post a thanksgiving picture of me with a giant ice-cold glass of pepsi pouring down my throat
best to all,
Lee0 -
prayersLeeinLondon said:Thanks everybody
Thank you for your support everyone. As I sit here at 4:52 AM, having woken up for about the 6th time tonight, I can honestly say I will pay practically anything for the sensation of drinking a large glass of liquid and not choking on it. Truly.
I have spent weeks taking tiny sips of water and juice and although pleasurable, most of it gets stuck and it feels scary.
I'm not too concerned about turkey, but to be able to gulp something cold would be so incredible I can't fathom it. If I can spend thanksgiving gulping juice and pop I would be a happy man!
Today was stressful but my lovely caregiver once again made it bearable. I have a big fat foot for no apparent reason, the fentanyl patch seems to give me at least 80% coverage so far, and the stretch sounds daunting but hey what other choices do I have?
If I am to get any good news at all, I will be incredibly pleased to post a thanksgiving picture of me with a giant ice-cold glass of pepsi pouring down my throat
best to all,
Lee
Although I do not post much, I follow both you and Chantel faithfully!! I am hoping that you are able to drink that pepsi this weekend. Isn't it true that in life we need to celebrate the "small" stuff, though when dealing with this cancer it is not so small after all. Thank you both for the update, and I will pray for you that your stretch goes smoothly0 -
Hi Chantal
Thinking of you
Hi Chantal
Thinking of you and Lee today, (well I think maybe your tomorrow, I'm a day ahead of you all) hoping that the stretch goes well and Lee is finally able to drink something or maybe even eat a little.
Ann0 -
Hi Chantel & lee
I am so sorry about all of Lee's complications. BUT I am elated he will go for the Esophageal Stretch. Hopefully that will really help him.
I know how hard this is for you and my heart goes out to you.
Please let us know what happened at the dr and if Lee is able to eat anything.
Barbara0 -
You know.....
You KNOW how much I love the both of you.
I posted to your other post as this is the older one now.
Much hugs and love.
-Eric0 -
stentschemosmoker said:You know.....
You KNOW how much I love the both of you.
I posted to your other post as this is the older one now.
Much hugs and love.
-Eric
Hello everyone and thank you;
I'm confused about the stent risks. I've read bad things but my doc told me I'm a good candidate because my tumours are above the G/E junction - does this mean less risk of dropping into the stomach?
Also the concept of sleeping upright seems to depend on the person. Remember that I have a feeding tube and do not eat ANY food, and drinking liquids is optional, so I can presume that I don't have to worry about food getting stuck in it?
It seems like a stent is my only option. Am I to believe that if my esophagus completely closes up then the risk is aspiration and pneumonia?
Are there any stent success stories out there? I've read so much about pain/bleeding/risk, is anyone glad they got the stent?
I'm hoping that if they can get my shivering under control then I could buy myself a few good months. My pain is managed well, I have lots of liver left, and goddamn it, I don't go down without a fight.
thanks in advance,
Lee in London0 -
Hi LeeLeeinLondon said:stents
Hello everyone and thank you;
I'm confused about the stent risks. I've read bad things but my doc told me I'm a good candidate because my tumours are above the G/E junction - does this mean less risk of dropping into the stomach?
Also the concept of sleeping upright seems to depend on the person. Remember that I have a feeding tube and do not eat ANY food, and drinking liquids is optional, so I can presume that I don't have to worry about food getting stuck in it?
It seems like a stent is my only option. Am I to believe that if my esophagus completely closes up then the risk is aspiration and pneumonia?
Are there any stent success stories out there? I've read so much about pain/bleeding/risk, is anyone glad they got the stent?
I'm hoping that if they can get my shivering under control then I could buy myself a few good months. My pain is managed well, I have lots of liver left, and goddamn it, I don't go down without a fight.
thanks in advance,
Lee in London
Well you know Steve did very well with his. He did have one problem where he chewed his chicken insufficiently and it got stock for an overnight, but that abated with cranberry juice (broke down the proteins).
He couldn't even swallow his own saliva and he was against a feeding tube, so we did find a guy who does this sort of thing all the time (wrote papers on scoping and such--Harvard instructor and practicing physician out of Mass. General in Boston). It went in without a hitch, was a little rough that first night, was some pressure from the stent expanding the next couple of days, but that's it. His tumor wasn't shrinking because he was done with chemo. I think perhaps lots of problems come from folks who get it while undergoing chemo/rad and then the tumor shrinks and the stent slips...
There are risks: tumor ingrowth, which would make taking it out again nearly impossible I guess. But for us, the stent gave him his dignity back so that he could eat and drink right up to when he slept all day...
I do believe Tina Blondek gave a postive spin on stents, too...but be sure to filter your responses by folks who are still undergoing chemo/rad and the chance of tumor shrinkage, with those who won't be dealing with that.
Hope you are enjoying some good drinks!
Jo-Ann0 -
To Stint or not to Stint, that is NOT a question....LeeinLondon said:stents
Hello everyone and thank you;
I'm confused about the stent risks. I've read bad things but my doc told me I'm a good candidate because my tumours are above the G/E junction - does this mean less risk of dropping into the stomach?
Also the concept of sleeping upright seems to depend on the person. Remember that I have a feeding tube and do not eat ANY food, and drinking liquids is optional, so I can presume that I don't have to worry about food getting stuck in it?
It seems like a stent is my only option. Am I to believe that if my esophagus completely closes up then the risk is aspiration and pneumonia?
Are there any stent success stories out there? I've read so much about pain/bleeding/risk, is anyone glad they got the stent?
I'm hoping that if they can get my shivering under control then I could buy myself a few good months. My pain is managed well, I have lots of liver left, and goddamn it, I don't go down without a fight.
thanks in advance,
Lee in London
Lee,
I know Steve and Jo-Ann had success and I was glad to see she posted that. Also as she said, Tina did as well I think.
I am against them, because even without treatment and the risk of shrinkage and falling, there is ALWAYS the risk of the tumor GROWING into and around the stint, causing, like Jo-Ann said, the inability to ever remove it again, and also there is a CONSTANT risk of hemorrhage due to the tumors growth into the material and it causes bleeding. Think of a barbed wire fence growing in to the trunk of a tree over time. THAT is what I saw in pictures. The cannot remove or stop the bleeding then. Ouch.
I will never do one. I wish you all the best and will do anything I can to help. As we all would.
I hope you find peace with your tough decision, and that the stretch gives you relief for more than two weeks as well.
I love you both.
-Eric0 -
stentLeeinLondon said:stents
Hello everyone and thank you;
I'm confused about the stent risks. I've read bad things but my doc told me I'm a good candidate because my tumours are above the G/E junction - does this mean less risk of dropping into the stomach?
Also the concept of sleeping upright seems to depend on the person. Remember that I have a feeding tube and do not eat ANY food, and drinking liquids is optional, so I can presume that I don't have to worry about food getting stuck in it?
It seems like a stent is my only option. Am I to believe that if my esophagus completely closes up then the risk is aspiration and pneumonia?
Are there any stent success stories out there? I've read so much about pain/bleeding/risk, is anyone glad they got the stent?
I'm hoping that if they can get my shivering under control then I could buy myself a few good months. My pain is managed well, I have lots of liver left, and goddamn it, I don't go down without a fight.
thanks in advance,
Lee in London
Lee,
My husband had good success with a stent. He was at the point where he couldn't get much of anything down.....and after the stent he did much better. He still had to be careful....had to stay on a soft diet but it was better than that having carnation instant breakfast everyday. We were both against it at first...especially after reading all the horror stories on this site, but for some reason, our GI dr thought it was a better option for Charlie...and he was right. He also told us they have been improved greatly and they are having a lot more success with them. I believe he told us it was coated so a tumor could not grow into/through it....but I may not be remembering that correctly.
As far as sleeping, I went to a medical supply store and bought a good firm wedge. We initialy tried one from bed, bath and beyond but it was too flimsy. Charlie got used to it very quickly and was able to sleep...of course he was on a lot of meds and they helped.
I hope this info helps...I know we struggled with the same decision regarding the stent.
I try to keep up with all your posts.....it breaks my heart to see you and you wife go through this. I keep you all in my daily prayers.
Jane0 -
Rather new to the site, butJaneE2366 said:stent
Lee,
My husband had good success with a stent. He was at the point where he couldn't get much of anything down.....and after the stent he did much better. He still had to be careful....had to stay on a soft diet but it was better than that having carnation instant breakfast everyday. We were both against it at first...especially after reading all the horror stories on this site, but for some reason, our GI dr thought it was a better option for Charlie...and he was right. He also told us they have been improved greatly and they are having a lot more success with them. I believe he told us it was coated so a tumor could not grow into/through it....but I may not be remembering that correctly.
As far as sleeping, I went to a medical supply store and bought a good firm wedge. We initialy tried one from bed, bath and beyond but it was too flimsy. Charlie got used to it very quickly and was able to sleep...of course he was on a lot of meds and they helped.
I hope this info helps...I know we struggled with the same decision regarding the stent.
I try to keep up with all your posts.....it breaks my heart to see you and you wife go through this. I keep you all in my daily prayers.
Jane
Rather new to the site, but already have such great affection for you too. Sending love and peace and comfort..
Cora0
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