suffering chemo side effect still? OR is it something else?
I know that Lee posted this question a few weeks ago, but, here we are again, or should I say still. Lee did his last week of chemo on August 11, which was cut short due to the feeding tube placement. Ever since then, he's been feeling terrible.
He's not nauseated too often, but vomiting a lot, He was up several times through the night last night. He's almost completely stopped eating or drinking anything by mouth. They have increased his feeding from Jevity 1.2 to Jevity 1.5. He has major hot and cold flashes, and due to this spends most of the day in bed, so he can easily regulate his temperature. He finds sunlight and humidity unpleasant and has holed up in the house, blinds drawn and windows closed. If he steps outside into the sunlight, he feels almost instantly nauseous and usually vomits. He feels downright miserable most of the time.
Now, here's what we're trying to figure out........ Is this caused by the progression of his cancer, the remnants of the chemo or the pain meds he's on? (hydromorph contin, 9mg 2X day AKA dilaudid)
He's not feeling any pain, so it almost seems like he's taking this for no reason, yet we're scared to quit taking it, due to withdrawal effects. Many of the side effects listed for the drug are pretty close to what he's feeling, yet also, they are the same effects of cancer, and the same as chemo!!!!!! As I've mentioned, every time we bring forth an issue to our oc, he just tells us to increase his pain meds. He's never offered us a reason for these issues.
So, we're wondering, would the chemo STILL be affecting him a month later? Should we wean off the dilaudid slowly to see if that helps? Should we just assume it's the cancer? Any advice please? He's desperate for some relief.
As always, any help would be much appreciated.
Chantal
Comments
-
You know where I am...
Chantal,
It has only been 30 days....4 weeks.....a very short time indeed.
You KNOW I have done No chemo, but in MY OPINION, do NOT stop or ween the pain meds. Lee will get a FAST and hard reminder that the pain is THERE if he does. I did this. I take my Oxycontin 80MG PLUS the 20MG every three hours as needed. When I have cut back, believe me, the pain is right there, waiting. Just like the cancer.
It's SO easy to start thinking that that pain is gone or something, and that the meds are not needed or too high. I start to feel "fine" despite all the other problems, and thinking these medications aren't doing anything. I tried stopping, not by choice, and aside from the withdraw, which trust me is a WHOLE other set of feelings and pain and misery unto itself, they are working and they are NEEDED. He does NOT need to add withdraw or pain to what all he is already fighting with and I do not think the pain meds are causing ANY of these problems...
Have you looked at his blood work recently? I am So ANEMIC!! I now have to take over 300MG of IRON (which is a NIGHTMARE to try and swallow/digest/tolerate!!) just to keep from being dangerously anemic and having the most ungodly hot/cold flashes, chills, unable to be hot enough, cold enough, etc. I can SO relate to the stacks of blankets, I was sitting in front of a PROPANE heater wrapped in a heating pad, and then turn on the air conditioner and Michelle has been MISERABLE so many times that way! I chase her outside with my crazy temperature extremes and she tolerates my crap! But when I started to get my iron in a little bit, and the anemia started to get better, I was less temperature sensitive. This is the ONLY thing that has helped. And it REALLY helped, too. I hope THIS helps!
I think this is ALL side effects of the chemo, 100%!
My sister had stage IIIb breast cancer seven YEARS ago. I asked her and she said she had nausea and vomiting and no desire to eat food (she never had a feeding tube) and the exhaustion stayed with her for MONTHS (like 8) after she was DONE with her chemo. So I think from that and reading many others with similar problems after finishing or stopping chemo, that it is just the poisons still in his system. Her nuropathy and hand and foot syndrome last til this day seven years later!
I would trust the pain meds, other than the withdraw that would be BAD, are doing their job and things would get much worse if you stop. He is not feeling any pain, you said that yourself. THAT is a blessing and a very good thing indeed. KEEP IT THAT WAY. The hot and cold flashes, the hiding in the dark; all of that sounds SO familiar to my sister-in-law's description-and that went on for months after chemo. So I share this, hoping it helps.
I will look forward to others responses, especially those who have done chemo. This is only my opinion and from my research as well. My sister in law was on a clinical trial with some of the same chemo's that WE use for EC, only because at that time they were experimenting with them for breast cancer still, she was HER2NEU, which I understand is RARE for breast cancer, and they were at extremely high doses, so she got some of those side effect really bad!
I know that his apatite and eating will resume when he gets far enough away from the bad tastes and mouth sores and bad memories and nausea from all that chemo. Until then I am grateful for that J-tube as otherwise he could starve to death, and that is NOT okay with anyone!
I will think of more I know, and post it then. I want others to share too. I HOPE!
I am sure thinking about Lee and you, too and praying for him like you would not believe!
He is not going to leave you because of this. He WILL overcome this-with your great help!
-Eric0 -
I had side effects for a long while from Taxoterechemosmoker said:You know where I am...
Chantal,
It has only been 30 days....4 weeks.....a very short time indeed.
You KNOW I have done No chemo, but in MY OPINION, do NOT stop or ween the pain meds. Lee will get a FAST and hard reminder that the pain is THERE if he does. I did this. I take my Oxycontin 80MG PLUS the 20MG every three hours as needed. When I have cut back, believe me, the pain is right there, waiting. Just like the cancer.
It's SO easy to start thinking that that pain is gone or something, and that the meds are not needed or too high. I start to feel "fine" despite all the other problems, and thinking these medications aren't doing anything. I tried stopping, not by choice, and aside from the withdraw, which trust me is a WHOLE other set of feelings and pain and misery unto itself, they are working and they are NEEDED. He does NOT need to add withdraw or pain to what all he is already fighting with and I do not think the pain meds are causing ANY of these problems...
Have you looked at his blood work recently? I am So ANEMIC!! I now have to take over 300MG of IRON (which is a NIGHTMARE to try and swallow/digest/tolerate!!) just to keep from being dangerously anemic and having the most ungodly hot/cold flashes, chills, unable to be hot enough, cold enough, etc. I can SO relate to the stacks of blankets, I was sitting in front of a PROPANE heater wrapped in a heating pad, and then turn on the air conditioner and Michelle has been MISERABLE so many times that way! I chase her outside with my crazy temperature extremes and she tolerates my crap! But when I started to get my iron in a little bit, and the anemia started to get better, I was less temperature sensitive. This is the ONLY thing that has helped. And it REALLY helped, too. I hope THIS helps!
I think this is ALL side effects of the chemo, 100%!
My sister had stage IIIb breast cancer seven YEARS ago. I asked her and she said she had nausea and vomiting and no desire to eat food (she never had a feeding tube) and the exhaustion stayed with her for MONTHS (like 8) after she was DONE with her chemo. So I think from that and reading many others with similar problems after finishing or stopping chemo, that it is just the poisons still in his system. Her nuropathy and hand and foot syndrome last til this day seven years later!
I would trust the pain meds, other than the withdraw that would be BAD, are doing their job and things would get much worse if you stop. He is not feeling any pain, you said that yourself. THAT is a blessing and a very good thing indeed. KEEP IT THAT WAY. The hot and cold flashes, the hiding in the dark; all of that sounds SO familiar to my sister-in-law's description-and that went on for months after chemo. So I share this, hoping it helps.
I will look forward to others responses, especially those who have done chemo. This is only my opinion and from my research as well. My sister in law was on a clinical trial with some of the same chemo's that WE use for EC, only because at that time they were experimenting with them for breast cancer still, she was HER2NEU, which I understand is RARE for breast cancer, and they were at extremely high doses, so she got some of those side effect really bad!
I know that his apatite and eating will resume when he gets far enough away from the bad tastes and mouth sores and bad memories and nausea from all that chemo. Until then I am grateful for that J-tube as otherwise he could starve to death, and that is NOT okay with anyone!
I will think of more I know, and post it then. I want others to share too. I HOPE!
I am sure thinking about Lee and you, too and praying for him like you would not believe!
He is not going to leave you because of this. He WILL overcome this-with your great help!
-Eric
Hi Chantal,
I think chemo side effects can last very long. My onc said when I asked why my toenail was falling off months later, what did you expect? you only got it every 3 wks because it was so strong. I finished in March and did not feel like any energy or life in me till July. I did not have vomiting but had trouble with my j tube site healing and lung problems too. I would say that Eric has some good advice about the pain meds, it is always better to be ahead of the pain then try to recoup and get the pain away once it has started big time. Is there any medical personnel you all could talk to? I was wondering if Lee has a home nurse coming to check his vitals and also we have nurse navigators here in Baltimore, they help you with a lot of problems with meds etc and comfort also. My prayers are with you, hoping that Lee has some peaceful days in comfort and not so uncomfortable. take care,
Donna700 -
Hi Chantal
Steve was on dilaudid, too. He was on it from November til July when they switched him over to morphine. He went sailing with dilaudid, so no sun sensitivity.
During his second chemo cocktail of Irinotecan, he became so ill that he couldn't take anything by mouth for about a week. We were so crazy that we "forgot" about giving him his dilaudid for much of that week (in May). The withdrawal, which we finally figured out, was not getting out of bed, depression, sadness, nausea all on top of the chemo side effects (diarrhea) . He stopped chemo, got back on the dilaudid and felt better once he got re-hydrated.
How long has Lee been on the dilaudid? And have you conferred with your nurses? Quite frankly, the hospice nurses had a better handle on the pain management than the cancer docs. Cancer docs are great at killing cancer cells, not so great at palliative measures. The nurses, on the front lines, see it daily and often were the smartest people when it came to pain and symptom management.
When the cancer really took hold of Steve's lungs, he couldn't tolerate any humidity, either. Would sit in a 66 degree living room, afraid to even go to the bathroom (not air-conditioned) as it would make his breathing nearly impossible. The morphine helped ease his breathing immensely. As did going to hospice house, where they did a first-class job of caring for him and easing his mind so much that he could work all day on painting or computer fun. He thrived in that atmosphere, whereby at home he was anxious about his symptoms.
Please keep us posted, and continue to reach out to us. We are here for you both, and you are in our hearts and our thoughts.
Jo-Ann0 -
Hi Chantaljojoshort said:Hi Chantal
Steve was on dilaudid, too. He was on it from November til July when they switched him over to morphine. He went sailing with dilaudid, so no sun sensitivity.
During his second chemo cocktail of Irinotecan, he became so ill that he couldn't take anything by mouth for about a week. We were so crazy that we "forgot" about giving him his dilaudid for much of that week (in May). The withdrawal, which we finally figured out, was not getting out of bed, depression, sadness, nausea all on top of the chemo side effects (diarrhea) . He stopped chemo, got back on the dilaudid and felt better once he got re-hydrated.
How long has Lee been on the dilaudid? And have you conferred with your nurses? Quite frankly, the hospice nurses had a better handle on the pain management than the cancer docs. Cancer docs are great at killing cancer cells, not so great at palliative measures. The nurses, on the front lines, see it daily and often were the smartest people when it came to pain and symptom management.
When the cancer really took hold of Steve's lungs, he couldn't tolerate any humidity, either. Would sit in a 66 degree living room, afraid to even go to the bathroom (not air-conditioned) as it would make his breathing nearly impossible. The morphine helped ease his breathing immensely. As did going to hospice house, where they did a first-class job of caring for him and easing his mind so much that he could work all day on painting or computer fun. He thrived in that atmosphere, whereby at home he was anxious about his symptoms.
Please keep us posted, and continue to reach out to us. We are here for you both, and you are in our hearts and our thoughts.
Jo-Ann
You really should
Hi Chantal
You really should be getting answers from the oc, have you tried the nurses? Maybe you need a new dr.?
I'm sorry you are going through such a rough time.
All I can offer is prayers for you and Lee.
Julie0 -
Thanks,jss2011 said:Hi Chantal
You really should
Hi Chantal
You really should be getting answers from the oc, have you tried the nurses? Maybe you need a new dr.?
I'm sorry you are going through such a rough time.
All I can offer is prayers for you and Lee.
Julie
Yes, we do need a new doctor. I've ranted about ours a lot on here, and I'm not going to do it now, but we are pretty unhappy with the care we've gotten so far. We are supposed to be getting referred to a palliative care doctor, which I'm very much looking forward to. We are just waiting for an appointment. I think we're going to start calling every day until we get one!! Our present oc seems to only want to talk chemo and pain relief, but nothing more. We do have a visiting nurse, but they have only been coming to clean his recent feeding tube incision. They are a pain management team of nurses, so perhaps they could indeed help. They have been monitoring his vitals (which have all been good for the most part) and asking about pain, but since he doesn't have any actual pain, they have not really focused on it.
This morning Lee has decided to stop taking the diluadid, and use the bumper (2mg) as needed and will return to the prescribed amount if he starts feeling pain or withdrawal symptoms. He was on morphine for unrelated pain in the past and did not handle it well. Perhaps he has the same sensitivity to the diluadid, since it's the same family as morphine. He will continue on the prochlorperazine for nausea, even though it does not really seem to be working very well.
We are not convinced that the misery he's in is from the chemo. He feels actually worse now than he did during his previous four rounds. When he was on his chemo holiday, back in June, he felt relatively great for about a month after, no side effects other than a bit of foot cracking and watery eyes. He had no nausea, vomiting or sensitivity to sunlight, heat, cold, temperature etc. This all seems to have started when he started taking pain relief. I guess it's an experiment, and we'll know soon enough if he's on the right track.
As always, thanks for your concern and advice, I'll keep you posted.....
Chantal0 -
Irinotecan?
Chantal, I am so very sorry to hear about Lee's continuous sickness. You should definitely discuss his condition with the oncologist. I do want, however, to let you know that Tom had... what it's called? photo-sensitivity, I think... when he was getting irinotecan. Luckily he got his treatment in winter and early spring and avoided much sunlight.
Wishing Lee to regain his strength. All the best,
Olya0 -
Iron IVchemosmoker said:You know where I am...
Chantal,
It has only been 30 days....4 weeks.....a very short time indeed.
You KNOW I have done No chemo, but in MY OPINION, do NOT stop or ween the pain meds. Lee will get a FAST and hard reminder that the pain is THERE if he does. I did this. I take my Oxycontin 80MG PLUS the 20MG every three hours as needed. When I have cut back, believe me, the pain is right there, waiting. Just like the cancer.
It's SO easy to start thinking that that pain is gone or something, and that the meds are not needed or too high. I start to feel "fine" despite all the other problems, and thinking these medications aren't doing anything. I tried stopping, not by choice, and aside from the withdraw, which trust me is a WHOLE other set of feelings and pain and misery unto itself, they are working and they are NEEDED. He does NOT need to add withdraw or pain to what all he is already fighting with and I do not think the pain meds are causing ANY of these problems...
Have you looked at his blood work recently? I am So ANEMIC!! I now have to take over 300MG of IRON (which is a NIGHTMARE to try and swallow/digest/tolerate!!) just to keep from being dangerously anemic and having the most ungodly hot/cold flashes, chills, unable to be hot enough, cold enough, etc. I can SO relate to the stacks of blankets, I was sitting in front of a PROPANE heater wrapped in a heating pad, and then turn on the air conditioner and Michelle has been MISERABLE so many times that way! I chase her outside with my crazy temperature extremes and she tolerates my crap! But when I started to get my iron in a little bit, and the anemia started to get better, I was less temperature sensitive. This is the ONLY thing that has helped. And it REALLY helped, too. I hope THIS helps!
I think this is ALL side effects of the chemo, 100%!
My sister had stage IIIb breast cancer seven YEARS ago. I asked her and she said she had nausea and vomiting and no desire to eat food (she never had a feeding tube) and the exhaustion stayed with her for MONTHS (like 8) after she was DONE with her chemo. So I think from that and reading many others with similar problems after finishing or stopping chemo, that it is just the poisons still in his system. Her nuropathy and hand and foot syndrome last til this day seven years later!
I would trust the pain meds, other than the withdraw that would be BAD, are doing their job and things would get much worse if you stop. He is not feeling any pain, you said that yourself. THAT is a blessing and a very good thing indeed. KEEP IT THAT WAY. The hot and cold flashes, the hiding in the dark; all of that sounds SO familiar to my sister-in-law's description-and that went on for months after chemo. So I share this, hoping it helps.
I will look forward to others responses, especially those who have done chemo. This is only my opinion and from my research as well. My sister in law was on a clinical trial with some of the same chemo's that WE use for EC, only because at that time they were experimenting with them for breast cancer still, she was HER2NEU, which I understand is RARE for breast cancer, and they were at extremely high doses, so she got some of those side effect really bad!
I know that his apatite and eating will resume when he gets far enough away from the bad tastes and mouth sores and bad memories and nausea from all that chemo. Until then I am grateful for that J-tube as otherwise he could starve to death, and that is NOT okay with anyone!
I will think of more I know, and post it then. I want others to share too. I HOPE!
I am sure thinking about Lee and you, too and praying for him like you would not believe!
He is not going to leave you because of this. He WILL overcome this-with your great help!
-Eric
Eric,
You should ask for iron IV. If you have a bleeding tumor, pills are not very effective. Tom was struggling to swallow those, but still ended up with several blood transfusions. We have requested iron IV and it helped tremendously!
Olya0
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