back for more chemo
Which leads me to the feeding tube debate. I went in with the guns blazing, ready to demand a feeding tube. The doctor strongly suggested that we wait a bit, to see if the chemo would help. She said we 'could' do a feeding tube, but it would delay the chemo start date, which she would prefer not to do. I agreed with her, and of course am now having second thoughts. I have been told so strongly, by so many of you the importance of having it placed ASAP, and here we are stalling.... again. She did say that at any point, we could reconsider, and have the tube put in, but she really was adamant about getting the chemo ball rolling. She seemed to be of the mind to treat the problem, not put a band-aid on it. I see her point, I suppose.
I have read many of your posts about the feeding tube procedure, and was wondering if any of you had to stay overnight in the hospital after the feeding tube surgery? I was under the impression that it was a day surgery and we'd be in and out within 4-5 hours, but the doctor told us that if and when he had it done, he'd need to spend a night in the hospital. Guess it doesn't really matter, but was just curious.
We're kind of feeling ready to face another round of chemo, not looking forward to the side effects, but I'm optimistic that his eating will improve.
Chantal
wife of Lee, stage IVB, mets to liver
Comments
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Hi Chantal
I think I understand that your doctor wants to get the chemo ball rolling because Lee's tumors are growing so quickly. Sounds like you are going in with a positive approach.
How does Lee feel about a feeding tube? Steve wasn't interested, tho I brought the subject up a few times...
Good luck on Thursday,
Jo-Ann0 -
Hi Jo-Annjojoshort said:Hi Chantal
I think I understand that your doctor wants to get the chemo ball rolling because Lee's tumors are growing so quickly. Sounds like you are going in with a positive approach.
How does Lee feel about a feeding tube? Steve wasn't interested, tho I brought the subject up a few times...
Good luck on Thursday,
Jo-Ann
Lee really did want a feeding tube. He finds the idea of eating anything repulsive. We go to the grocery store for 'inspiration', and he can't find a single thing in the whole store that appeals to him. (and of course, the soft food limitations don't help) I think he would find that the tube would relieve his stress about eating. He sometimes gets really upset at meal times, and starts banging stuff around and cursing. He's frustrated that he just does not want to eat, and also that swallowing is so difficult sometimes. He tries to force himself to eat, and has been doing a bit better in the last few days, but of course, he's still not eating enough, and stuff is getting stuck, which causes him fear and pain. The other day, for example, he had food stuck, and took a drink to flush it down, that got stuck and was up to his windpipe, causing him to not be able to breathe. Talk about terrifying! He did get it out fairly quickly, but of course the meal was ruined, and he was in pain for hours. The feeding tube just seems so much easier, and he would have no choice in the matter. Captain Chantal would have him tied to the chair with nutrients getting in there!
So anyways, we'll wait and see. FIngers crossed for chemo. Not looking forward to it, as everyone who's already done a round knows how much *fun* it is. For a while, he said, NO MORE CHEMO, but has decided to give it a shot, with the qualifier that he can quit at any time if it gets too unpleasant. I'm hoping we see quick results, and that he starts eating on his own. If not, we will definitely revisit the feeding tube issue.
Jo-Ann, hope Steve is doing well, you have not posted much lately, I've noticed. Thinking of you, hoping he's comfortable.
Chantal0 -
Positive thoughts your wayDaisylin said:Hi Jo-Ann
Lee really did want a feeding tube. He finds the idea of eating anything repulsive. We go to the grocery store for 'inspiration', and he can't find a single thing in the whole store that appeals to him. (and of course, the soft food limitations don't help) I think he would find that the tube would relieve his stress about eating. He sometimes gets really upset at meal times, and starts banging stuff around and cursing. He's frustrated that he just does not want to eat, and also that swallowing is so difficult sometimes. He tries to force himself to eat, and has been doing a bit better in the last few days, but of course, he's still not eating enough, and stuff is getting stuck, which causes him fear and pain. The other day, for example, he had food stuck, and took a drink to flush it down, that got stuck and was up to his windpipe, causing him to not be able to breathe. Talk about terrifying! He did get it out fairly quickly, but of course the meal was ruined, and he was in pain for hours. The feeding tube just seems so much easier, and he would have no choice in the matter. Captain Chantal would have him tied to the chair with nutrients getting in there!
So anyways, we'll wait and see. FIngers crossed for chemo. Not looking forward to it, as everyone who's already done a round knows how much *fun* it is. For a while, he said, NO MORE CHEMO, but has decided to give it a shot, with the qualifier that he can quit at any time if it gets too unpleasant. I'm hoping we see quick results, and that he starts eating on his own. If not, we will definitely revisit the feeding tube issue.
Jo-Ann, hope Steve is doing well, you have not posted much lately, I've noticed. Thinking of you, hoping he's comfortable.
Chantal
Hi Chantal,
As we know, some chemos are better tolerated than others; some folks sail through a particular regimen. Here's hoping Lee find the chemo to be easy and the relief he seeks from tumor shrinkage.
Keep him well hydrated; fluids are more critical than food--jump on any nausea or diahrrea should he experience those. But the nurses at the oncologist office are often a great resource of what to expect and how to deal with such issues. They are on the front lines and can be a wonderful source of support and information.
Steve is comfortable in Hospice House--his choice. He was doing some painting and was finding great relief in the excellent nursing staff there. His lungs are in poor shape, so now he's on constant morphine to aid his breathing, but we've been told that his body can't keep up compensating for the diminishing capacity of his lungs. He is still very pleasant and retains a sense of humor and grace that is commendable. But the morphine is now confusing him quite a bit and they are trying to find that balance of keeping his breathing good and keeping him lucid.
We knew this would come and are comforted by the excellent care and by our wonderful memories, but especially that Steve is content and comfortable.
Jo-Ann0 -
Hi Chantal
Just wanted you
Hi Chantal
Just wanted you to know that I am thinking of you and Lee, I know how hard a decision it is to go for another round of chemo, hoping side effects are not too bad. I know with Mark they haven't been, what chemo drugs is Lee going to be on do you know? Mark is on Taxol nowhere near as harsh as his original round. with regards to a feeding tube keep on top of this, Lee will need the extra nutrients, don't let him get to the point where he is too weak to handle getting the feeding tube put in, just my thoughts, us caregivers have to develop a fairly thick skin and go in fighting.
Stay positive
Ann0 -
Leefredswilma said:Hi Chantal
Just wanted you
Hi Chantal
Just wanted you to know that I am thinking of you and Lee, I know how hard a decision it is to go for another round of chemo, hoping side effects are not too bad. I know with Mark they haven't been, what chemo drugs is Lee going to be on do you know? Mark is on Taxol nowhere near as harsh as his original round. with regards to a feeding tube keep on top of this, Lee will need the extra nutrients, don't let him get to the point where he is too weak to handle getting the feeding tube put in, just my thoughts, us caregivers have to develop a fairly thick skin and go in fighting.
Stay positive
Ann
Well, first of all, Ann, Lee is going to have the same dose and same drugs as last time His treatment involved iv cisplatin and epirubicin followed by 2 weeks capecitabine (xeloda) orally, repeated every 3 weeks. I am unsure of the dosages. We had 4 rounds last time, not sure how many he'll have this time. He was on a stronger dose for the first round, but the dose was reduced because he suffered horrible nausea and vomiting. The rest of the rounds were unpleasant, but manageable. And of course, the accumulation of the side effects are not much fun. He also had dry mouth, hand and foot syndrome, fatigue, hair loss, constipation, watery eyes and I don't remember what else. Each individually was not so bad, but put them all together, and you have a miserable man. However, on the positive side, he was eating us out of house and home!!!!!
I am now regretting the feeding tube more and more. The doctor made it sound so reasonable at the time, and we just let her persuade us to wait. I know that if he weakens too much they won't be able to do a tube. I think right now, he's fairly healthy, aside from pain, fatigue and appetite. He has been able to do some activities, like walking the dog, pulling weeds and general house tidy-up. He is by no means as active or strong as he was before this all began but his 'new normal' seems to be not too terrible. I will be keeping a close eye on his eating and strength, and will not take no for an answer again. (so far we've asked for a tube twice, and been rejected both times) If it means putting off chemo for a few days or a week, so be it. I'm going to give it a few weeks, to see if the chemo helps his appetite, as it did last time.
Sherri, we did ask about theresphere, and were told that it's the same as radiation, and he's not a candidate. Also, there are only 2 centres in Canada which use this treatment, and both are on the other side of the country. It was also unclear wether the Canadian health care system would cover it. We asked the doctor and googled it but could find no clues..... frustrating!!!!
I know that he's a her2 positive, but here in good ole Canada, it's still going through clinical trials, which we declined (unknowingly at the time) so now that we've already had a round of chemo, they won't let him have the herceptin trial.
I thank you all for your support and encouragement.
be well,
Chantal0 -
I agree with Sherri and doDaisylin said:Lee
Well, first of all, Ann, Lee is going to have the same dose and same drugs as last time His treatment involved iv cisplatin and epirubicin followed by 2 weeks capecitabine (xeloda) orally, repeated every 3 weeks. I am unsure of the dosages. We had 4 rounds last time, not sure how many he'll have this time. He was on a stronger dose for the first round, but the dose was reduced because he suffered horrible nausea and vomiting. The rest of the rounds were unpleasant, but manageable. And of course, the accumulation of the side effects are not much fun. He also had dry mouth, hand and foot syndrome, fatigue, hair loss, constipation, watery eyes and I don't remember what else. Each individually was not so bad, but put them all together, and you have a miserable man. However, on the positive side, he was eating us out of house and home!!!!!
I am now regretting the feeding tube more and more. The doctor made it sound so reasonable at the time, and we just let her persuade us to wait. I know that if he weakens too much they won't be able to do a tube. I think right now, he's fairly healthy, aside from pain, fatigue and appetite. He has been able to do some activities, like walking the dog, pulling weeds and general house tidy-up. He is by no means as active or strong as he was before this all began but his 'new normal' seems to be not too terrible. I will be keeping a close eye on his eating and strength, and will not take no for an answer again. (so far we've asked for a tube twice, and been rejected both times) If it means putting off chemo for a few days or a week, so be it. I'm going to give it a few weeks, to see if the chemo helps his appetite, as it did last time.
Sherri, we did ask about theresphere, and were told that it's the same as radiation, and he's not a candidate. Also, there are only 2 centres in Canada which use this treatment, and both are on the other side of the country. It was also unclear wether the Canadian health care system would cover it. We asked the doctor and googled it but could find no clues..... frustrating!!!!
I know that he's a her2 positive, but here in good ole Canada, it's still going through clinical trials, which we declined (unknowingly at the time) so now that we've already had a round of chemo, they won't let him have the herceptin trial.
I thank you all for your support and encouragement.
be well,
Chantal
I agree with Sherri and do not understand this physicians rationale. Just from our own experience the J-tube saved my hus bands llife. Two severe rounds of dehydration then finally tube placed and never worried about appetite decline again. Chemo depletes appetite fatiques one and not to mention anxiety and stress for the caregiver seeing the one she loves not get nourishment. Please reconsider.0 -
j-tubesammy123 said:I agree with Sherri and do
I agree with Sherri and do not understand this physicians rationale. Just from our own experience the J-tube saved my hus bands llife. Two severe rounds of dehydration then finally tube placed and never worried about appetite decline again. Chemo depletes appetite fatiques one and not to mention anxiety and stress for the caregiver seeing the one she loves not get nourishment. Please reconsider.
Well, We're 4 days into Lee's chemo, and things are not going very well. He's been vomiting, unable to keep anything in, including liquids and probably his chemo pills (xeloda) He has eaten very little, and seems to only be able to manage tiny sips of liquid at a time. He is on 3 different kinds of anti nausea meds (granisitron, dexamethasone and prochlorazine) which don't seem to be doing much good. He does not really get nauseated, but just starts vomiting. This time around seems to be so much worse than last time, perhaps because he's much weaker than he was when he did his first 4 rounds starting in February. He can barely get out of bed.
This morning, he's been having a hard time swallowing liquids, although he did manage to get his pills down. He seems to also be haiving a hard time swallowing saliva, and is spitting up foamy stuff. Unfortunately, between his chemo meds, anti nauseants, pain control and laxatives, he needs to take over 30 pills a day. That's not even mentioning the supplements that he should be taking. Now, what is the big concern is, what the heck are we going to do if he can't swallow his pills?????
This leads me to my question. You have all been very helpful and adamant about getting a feeding tube put in and I have listened. I am calling tomorrow, and WILL NOT TAKE NO FOR AN ANSWER this time. (this will be my third time requesting it) They keep saying that he doesn't need it yet. I am going to go in fighting, and pull out all the cards. I think that the J-tube seems best, but can you put pills into a feeding tube? Is it wise to put meds into the small intestine? Or would he be better off with one that feeds into the stomach? I just fear that if it's going into the stomach, and he's still vomiting, he'll just lose everything anyways.
I am so frustrated with the doctors right now. I don't see how they can ethically keep turning us down. Is it moral to let someone starve to death? That seems to be what they're doing to my Lee.
Thanks, as always
Chantal0 -
Sorry for your troubleDaisylin said:j-tube
Well, We're 4 days into Lee's chemo, and things are not going very well. He's been vomiting, unable to keep anything in, including liquids and probably his chemo pills (xeloda) He has eaten very little, and seems to only be able to manage tiny sips of liquid at a time. He is on 3 different kinds of anti nausea meds (granisitron, dexamethasone and prochlorazine) which don't seem to be doing much good. He does not really get nauseated, but just starts vomiting. This time around seems to be so much worse than last time, perhaps because he's much weaker than he was when he did his first 4 rounds starting in February. He can barely get out of bed.
This morning, he's been having a hard time swallowing liquids, although he did manage to get his pills down. He seems to also be haiving a hard time swallowing saliva, and is spitting up foamy stuff. Unfortunately, between his chemo meds, anti nauseants, pain control and laxatives, he needs to take over 30 pills a day. That's not even mentioning the supplements that he should be taking. Now, what is the big concern is, what the heck are we going to do if he can't swallow his pills?????
This leads me to my question. You have all been very helpful and adamant about getting a feeding tube put in and I have listened. I am calling tomorrow, and WILL NOT TAKE NO FOR AN ANSWER this time. (this will be my third time requesting it) They keep saying that he doesn't need it yet. I am going to go in fighting, and pull out all the cards. I think that the J-tube seems best, but can you put pills into a feeding tube? Is it wise to put meds into the small intestine? Or would he be better off with one that feeds into the stomach? I just fear that if it's going into the stomach, and he's still vomiting, he'll just lose everything anyways.
I am so frustrated with the doctors right now. I don't see how they can ethically keep turning us down. Is it moral to let someone starve to death? That seems to be what they're doing to my Lee.
Thanks, as always
Chantal
I agree with Sherri also. Dont understand some doctors mayself. Jtube should be part of the treatment. It just plain gives the patient and caregiver peace of mind. I think the reason for not wanting to do it close to chemo is because of the healing, but not sure. All the chemo in the world wont help if the patients isnt hydrated and fed.
Anyway from here forward I would vote for the Jtube to bypass the stomach all together. Most pills can be crushed and put in the jtube. The extended release or long acting type cant because they have to release the med or they would get a hugh dose all at once. Just crush as fine and u can and flush well. Until the jtube goes in, another route for him to get his meds if he cant swollow is rectally. Almost any pill that can be taken by mouth can be given rectally. The intestines will absorb it. For instance, my hubby is late stage 4, and he is on a long acting pain med, most times he can swollow it, but if he cant, I can and have, given it the other way. This order comes from hospice. If he continues his vomiting he may need iv hydration.
Like Sherri,I am only giving you info that we have learned from being cargivers. I am 18 months into our journey. I wish you all the best.
Nancy0 -
pillsDaisylin said:j-tube
Well, We're 4 days into Lee's chemo, and things are not going very well. He's been vomiting, unable to keep anything in, including liquids and probably his chemo pills (xeloda) He has eaten very little, and seems to only be able to manage tiny sips of liquid at a time. He is on 3 different kinds of anti nausea meds (granisitron, dexamethasone and prochlorazine) which don't seem to be doing much good. He does not really get nauseated, but just starts vomiting. This time around seems to be so much worse than last time, perhaps because he's much weaker than he was when he did his first 4 rounds starting in February. He can barely get out of bed.
This morning, he's been having a hard time swallowing liquids, although he did manage to get his pills down. He seems to also be haiving a hard time swallowing saliva, and is spitting up foamy stuff. Unfortunately, between his chemo meds, anti nauseants, pain control and laxatives, he needs to take over 30 pills a day. That's not even mentioning the supplements that he should be taking. Now, what is the big concern is, what the heck are we going to do if he can't swallow his pills?????
This leads me to my question. You have all been very helpful and adamant about getting a feeding tube put in and I have listened. I am calling tomorrow, and WILL NOT TAKE NO FOR AN ANSWER this time. (this will be my third time requesting it) They keep saying that he doesn't need it yet. I am going to go in fighting, and pull out all the cards. I think that the J-tube seems best, but can you put pills into a feeding tube? Is it wise to put meds into the small intestine? Or would he be better off with one that feeds into the stomach? I just fear that if it's going into the stomach, and he's still vomiting, he'll just lose everything anyways.
I am so frustrated with the doctors right now. I don't see how they can ethically keep turning us down. Is it moral to let someone starve to death? That seems to be what they're doing to my Lee.
Thanks, as always
Chantal
Chantal,
I am very sorry to hear about the problems Lee is having. I hope things turn around for him.
Since the very beginning Rickie has had most all his medication in liquid form. When the doctor prescribes anything we always remind him that he is having swallowing difficulties and they order it in suspension form. About a week before he was diagnosed he tried to take an allergy pill and it got stuck and he had a terrible time with it. So from the get go we have been getting liquid meds. The only pills he takes are very small ones. One of the first chemos the doctor was going to prescribe was a tablet, and Rickie told him there was not way he could swallow it, so the doctor chose another drug. All of his chemo has been intravenously administered.
As far as the feeding tube goes as I have said we had the same problems as you getting one. Honestly I am starting to wonder if it has something to do with being stage IV and end of life issues. I know we experienced some of this with Rickie's mom who died of heart disease. She was in very bad shape and did have a DNR order, but they came to us and asked us to stop the feedings. It was a very difficult decision and still hard to think about. So I kind of wonder if it doesn't have something to do with that. If they don't have a feeding tube, then you don't have to stop feeding though it. I don't know, it is just something I have had rambling in the back of my head. As I have mentioned before I don't think the doctor expected Rickie to last as long as he has, so I don't think he thought the tube was necessary, but when he saw that we were not giving up, he finally relented and okayed it. One thing we were told, was not to put anything down that tube but the formula they give us. They said that is why so many people have clogging issues. We have never had any problems, knock on wood. Again Rickie has the PFG tube and it is into the stomach and no problems there, even when he is feeling nauseated.
Good luck!
Cheryl0 -
Many medications can be given via a J-TubeDaisylin said:j-tube
Well, We're 4 days into Lee's chemo, and things are not going very well. He's been vomiting, unable to keep anything in, including liquids and probably his chemo pills (xeloda) He has eaten very little, and seems to only be able to manage tiny sips of liquid at a time. He is on 3 different kinds of anti nausea meds (granisitron, dexamethasone and prochlorazine) which don't seem to be doing much good. He does not really get nauseated, but just starts vomiting. This time around seems to be so much worse than last time, perhaps because he's much weaker than he was when he did his first 4 rounds starting in February. He can barely get out of bed.
This morning, he's been having a hard time swallowing liquids, although he did manage to get his pills down. He seems to also be haiving a hard time swallowing saliva, and is spitting up foamy stuff. Unfortunately, between his chemo meds, anti nauseants, pain control and laxatives, he needs to take over 30 pills a day. That's not even mentioning the supplements that he should be taking. Now, what is the big concern is, what the heck are we going to do if he can't swallow his pills?????
This leads me to my question. You have all been very helpful and adamant about getting a feeding tube put in and I have listened. I am calling tomorrow, and WILL NOT TAKE NO FOR AN ANSWER this time. (this will be my third time requesting it) They keep saying that he doesn't need it yet. I am going to go in fighting, and pull out all the cards. I think that the J-tube seems best, but can you put pills into a feeding tube? Is it wise to put meds into the small intestine? Or would he be better off with one that feeds into the stomach? I just fear that if it's going into the stomach, and he's still vomiting, he'll just lose everything anyways.
I am so frustrated with the doctors right now. I don't see how they can ethically keep turning us down. Is it moral to let someone starve to death? That seems to be what they're doing to my Lee.
Thanks, as always
Chantal
Chantal,
When I was in the hospital after my EC surgery many of my medications were crushed, mixed with water and administered via my J-tube. I really don't understand why they are so reluctant to give Lee a J-tube. It would certainly make things easier.
The continual vomiting and difficulty swallowing saliva makes me wonder if Lee may have developed a stricture in his esophagus. I would certainly discuss this with your oncologist if this continues.
I will be praying that things improve soon.
Best Regards,
Paul Adams,
McCormick, South Carolina0 -
Hi ChantalDaisylin said:j-tube
Well, We're 4 days into Lee's chemo, and things are not going very well. He's been vomiting, unable to keep anything in, including liquids and probably his chemo pills (xeloda) He has eaten very little, and seems to only be able to manage tiny sips of liquid at a time. He is on 3 different kinds of anti nausea meds (granisitron, dexamethasone and prochlorazine) which don't seem to be doing much good. He does not really get nauseated, but just starts vomiting. This time around seems to be so much worse than last time, perhaps because he's much weaker than he was when he did his first 4 rounds starting in February. He can barely get out of bed.
This morning, he's been having a hard time swallowing liquids, although he did manage to get his pills down. He seems to also be haiving a hard time swallowing saliva, and is spitting up foamy stuff. Unfortunately, between his chemo meds, anti nauseants, pain control and laxatives, he needs to take over 30 pills a day. That's not even mentioning the supplements that he should be taking. Now, what is the big concern is, what the heck are we going to do if he can't swallow his pills?????
This leads me to my question. You have all been very helpful and adamant about getting a feeding tube put in and I have listened. I am calling tomorrow, and WILL NOT TAKE NO FOR AN ANSWER this time. (this will be my third time requesting it) They keep saying that he doesn't need it yet. I am going to go in fighting, and pull out all the cards. I think that the J-tube seems best, but can you put pills into a feeding tube? Is it wise to put meds into the small intestine? Or would he be better off with one that feeds into the stomach? I just fear that if it's going into the stomach, and he's still vomiting, he'll just lose everything anyways.
I am so frustrated with the doctors right now. I don't see how they can ethically keep turning us down. Is it moral to let someone starve to death? That seems to be what they're doing to my Lee.
Thanks, as always
Chantal
So sorry to hear
Hi Chantal
So sorry to hear of Lee's ongoing problems and can understand your frustration, we have not had to worry about a feeding tube so far so cannot give you much advice there, only to say I think as a caregiver you know when the time is right because you are with them all the time, go in there guns blazing, if Lee is not able to stomach anything then he desperately needs the extra nutrients and fluids the feeding tube will give him. I think that the Doctors sometimes think that at Stage iv there is minimal that they can do but if you guys are not giving up then they darn well shouldn't either. My thoughts are with you both hoping things start to improve.
Ann0
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