Low Platelets
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Oh, Jan, I know exactly where you are coming from. We feel damned if we do and damned if we don’t. The fact that he doesn’t want another opinion and doesn’t even want to try other meds tells me he may be not fighting this.I hate to be so blunt but a person who wants the help is to me fighting. If you don’t listen to the Palliative Team and he lets the pain get out of hand, you will have a much harder time controlling the pain as you go on. It is so very important to keep the pain under control as when in pain it also zaps all his energy as he is spending his energy fighting the pain. Palliative Team is just that, a Team to see to it that he stays comfortable. What do the pain meds do to him? He could try other pain meds. Teddy used to get hallucinations from his Morphine so they gave him Haladol(sp) for that and the 2 together worked fine. They can also give him something for nausea. On the other hand, there is always another hand, he may feel that if he gives in to more and other meds he is losing his battle. I don’t know what kind of progosis the doctor has given but if he has Hospice now I would not put him through anymore than need be.
Why a feeding tube? I personally wouldn’t but you can always ask the doctor and the Nurses. Of course he is trying to be strong for you and you also have to be strong for him. And no, you are not being selfish. None of us wish to see our loved ones suffer. Stay strong and we are all here for you!Just an update. My hubby is still not willing to ask for a second opinion. He’s getting weaker by the day. We met with the palliative care team on Fri to tweak his meds. They seem to want to push increasing the pain meds even though he says he doesn’t like the way they make him feel. He wants to only take them when the pain gets bad. Part of me wants to trust the doctors but I also see what the pain meds do to him, and I’m not going to force him to take them until he wants them. He’s had a bad weekend. Couldn’t keep anything down, even drinks, other than water.
I keep wondering if he should get a feeding tube. Am I wrong for even thinking about such a thing? Am I being selfish for wanting to put him through even more? I just don’t know what to think anymore. I look at him and at times he just seems weak and tired, other times, he looks like he’s getting closer to the end. I don’t want him to suffer needlessly, but he doesn’t seem like he wants to give up either. I worry about what to bring up, to him, because I don’t want to upset him. He’s very fragile right now and I think he’s trying so hard to be strong for us.
Hi Jan,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your husband. I too agree with what the others have said re a second opinion or even a third one if possible. Wish I knew though what to say to you that would help in trying to convince your husband to at least seek another opinion. Hopefully someone else will know what to say that could help here.
How long has your husband had the nausea for? My dad had many issues with nausea and he tried a variety of types and combinations of medications for that, some with varying amounts of success. But there are meds out there that can help with the nausea and your gp will be able to help with that. If you use the search function here at the top of the page then you will see a ton of posts by the members here regarding nausea.
I am glad that you joined us here as you will get so much support and help from all of us, and please feel free to ask any questions that you will have and we will do what we can to help in answering them. And please let us know how you get on with speaking to your husband about getting another opinion. We know what you are going through.
My best wishes to you and your husband,
Gavin
Thank you all for your responses. I desperately want a second opinion, but my husband seems to think that every doctor is going to come to the same conclusion. He got upset when I suggested it, as though I’m trying to give him false hope. I feel like our biggest mistake was just trusting the doctors blindly, without question. I’m not trying to imply that the doctors did anything wrong, but we didn’t ask enough questions throughout the whole process, and were blindsided when the oncologist said there was no hope.
He has an episode everyday, (usually only once) with nausea, that seems to hit, when he first gets up from a prone position. I’ve tried to get him to take the ondansetron before he gets out of bed, to see if that will prevent it, but he gets stubborn and thinks he can tough it out. We don’t know if the nausea is coming from the cancer in the abdomen, or possibly from the fluid build up in his belly. He’s been taking two drugs for the fluid, which help but don’t eliminate enough of the fluid to make the belly go down.
I’m going to try to talk to him again about the second opinion and let you know what happens.
Jan….Another welcome to our site is coming from me also. I also agree with obtaining another opinion(or two.)
Additionaly you might want to take a look at these postings:http://www.cholangiocarcinoma.org/punbb/viewtopic.php?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2874
Please, stay in touch. We care.
All my best wishes,
MarionHello Jan and welcome to our wonderful family. I am so sorry to hear about your husband. I really believe that a second opinion is in order. I have not heard of anyone here not being treated for low platelets. When you feel a doctor has given up, I take that as a sign to forge ahead. Gather all your husband’s records and test results and see what someone else recomends. In the meantime you can go to our serch engine at the top of the page and type in low platelets and see what posts come up. There may be some good information for you. Please keep us posted.
Hi,
Second oncologist opinion is needed for your husband if I may suggested.
Ask if your husband cannot take chemo;how about molecularly targeted agents like Tarceva or Sorafenib? or is it possible to get platelets infusion to boost up the number and then give chemo. ;ask why or why not of each of his/her answer in order to understand the doctor’s thinking process of his/her recommendation..
I am not a doctor,I am just a patient like your husband,but I will ask these kind of questions to help me understand about the doctors thinking process specific to my disease condition.
I also may urge your husband to see a hepatologist (one who specialized in liver) for evaluation of his liver cirrhosis and hepatitis B condition.In the past few years,antiviral drug like entecavir can treat chronic hepatitis B very effectively.and of course ask the doctor about anything can be done on cirrhosis too.
Hepatitis and liver cirrhosis complicated the plan of treatment for CC .
The criteria cut off points for platelets for most clinical trials is >/=100,000.
therefore your husband may not qualify.But I did notice some patient received Gemzar alone when the platelets is around 75,000.It really depends on the experience of the oncologist and the condition (the health status) of the patients.God bless.
Hello everyone. My husband is 54 years old and was diagnosed with tumors in his liver, back in Oct, 2010. He’s received two chemo embolizations, one in Dec and the other in April. The interventional radiologist is the one who told us he had cholangiocarcinoma. He recovered very well from the first, but has not regained his strength or appetite since the second treatment. We met with an oncologist at Hopkins, who basically told us there was nothing they could do to treat him anymore, because he has low platelets. He has cirrhosis from Hep B.
The oncologist said that his platelet count was too low and probably wouldn’t recover to undergo treatment. His count has been low from the beginning of treatment, currently around 68. Are there any oncologists that are willing to treat the low platelets in order to give chemo? I asked about transfusions and they said it wouldn’t help.
Up until he received the second embolization, we were under the assumption that the cancer was still contained to the liver. He initially had every scan possible, including a pet scan to confirm that there was no cancer anywhere else. Now the cancer has spread to his abdomen, and they told us he has aprox 6 months. I don’t want to give up hope.
Any information you can give me would be appreciated.
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