One patient with glioblastoma still alive nine years later
by Concerneddaughter100 on Thu May 10, 2007 12:00 AM
by Lostsmiles on Thu May 10, 2007 12:00 AM
Sorry about your mother I am going through the same thing. It’ hard to say but it seems your mother is having a good response to gemzar. For her constipation is she taking anything? For instance colace, senkot, and Mirlax. Also have they scanned her bile duct to make sure there's no tumor blockage? If there is she might need a stent. If you mother starts to look jaundice or have dark urine then she needs to be checked for the block bile duct. It’s also important she drinks lots of fluids.
The question about the way she looks is common or should say normal with PC patients since the pancreas is not working properly. PC patients are not getting the nutrients out of the food they eat like a healthy person does. I believe this is called malabsorption. Most people don’t understand about this cancer, they see someone like Lance Armstrong and think anyone can beat cancer. Not adenocarcinoma of the pancreas. There might be a chance for some if they get the cancer out or remove the pancreas. But this cancer is aggressive and you never know what's going on.
Also the Johns Hopkins website has lots of great info.
I wish you guys well...Lostsmile
My mom has been prescribed several different things for the constipation; none of which she sticks to. She took Mirlax for 1.5 days. On the half day her stomach cramped badly and she blamed it on the Mirlax and refused to take it anymore. She drank mineral oil for a few days but since it didn't "work" her fast enough, she stopped taking that too. Now she's taking some new medicine that was prescribed to her, Enulose I believe. She's been on it for about a week now. She's soooo stubborn. I try to tell her that the cramps could be caused by chemo, some other medication she's taking, anything. She can't definitely blame the laxatives for the discomfort. She does the same thing with different foods. I am struggling to be patient with her but when I see her in pain due to the constipation, I know she is partly the blame because she refuses to follow her physician's instructions and stay on ONE laxative as prescribed. If her bowels become blocked, God forbid, then we'll really have a sticky situation on our hands. That is my biggest fear. But how in the world do I convince her to do what she's being told without hurting her feelings? I often find myself talking to her like she's a child; coaxing her to do things that she already knows should be done. She cries out that she's scared. How do I minimize that fear for her? I keep telling her that this is not the end. That her body and the chemo are trying to fight the cancer and she has to believe that to help. I told her that if this were the end, her body would be shutting down, not trying to fight. She thinks she's going to fall asleep and never wake up any day now. That's why she never slept initially. I sometimes feel like she's giving up because she keeps saying she can't take it anymore. I realize some references of this story may seem conflicting, but I assure you these are the reasons for my confusion. If the cancer is stabilized and she's not getting worse, and she keeps telling everybody that her pain is mostly minimal, why does she break down and say she can't take it anymore? What is she not telling me/us? What is really going on?
I have noticed some yellowing of her eyes. I'm not sure what color her urine is, I'll have to work with my dad to monitor that. I think a symptom bile duct blockage is also itchy skin right? She's mentioned she's itchy a couple of times, but not on a regular basis. To answer your question, no, her bile duct has not been scanned to my knowledge but I will be sure to ask her physician about it during her next appointment.
You're right about the not understanding the cancer. I want to desparately though. I want to know what I can do to help her through this. I think it's equally frustrating for my mom to not know of anyone that has been through this already. She has friends and relatives that have fought through cancers of the lymph nodes, throat, breast and prostate. They give her all kinds of suggestions on what to eat, drink and do. Her friend that survived breast cancer keeps telling her to get out of the bed, get dressed and go for a walk. That frustrates me because my mother doesn't have the energy to do those things. They sometimes think she's having a pity party for herself, which I know is not true. I equate that to them not being here with her to see what I see and know what I know.
Thanks for responding.
Hi I forgot to add they can test the bilirubin levels by a blood test, if this to high then there could be blockage. I understand what your saying my mother as well is frighten. She ask's all the time what's going to happen to me? Am I going to suffer? You can imagine how this breaks me everytime!! I say, the say thing to her as you do it's not you time your still fighting. At times I know she wants to give up, I am dreading the that day. It seems PC is an uncharted map and if your near a city that has doctor's who dealt with PC great, if not well the others will give up on you quickly. Have you been to the PanCan.org website? They have a support system called PALS where you can get in contact with a survivor of PC by email or phone. I tried to get my mother to do this but she rather not. Just keep telling your mother to keep fighting!!
by Redstar on Tue May 29, 2007 12:00 AM
condition is very norm for PC cancer. The pancrease is stuffed between the spine and the stomach and any cancer or tumor that makes it bigger adds pressure witch causes pain. Along with that you say she is constipated a lot. The food that she eats adds pressure along with the old food she is not releasing. There is only so much room in our body. Keeping the elimination can cause more problems. I have heard talk of a colon cleansing, holistic place in Califonia. (I am sure u can find online sight) Not sure of the location, but if your mother can still eat and is not vomiting this is really good. Please at least look into the colon cleansing even if it is PC cancer. Stabilizing- not growing but not gone. Maybe cleansing can help the rest of the way. Not for certain but worth the effert to look into. Gets ride of all toxins in the body through elimination.
I really don't think your mother is keeping anything from you these are normal reactions. Her mind is probably so worn down from the all the thoughts that can service in a person who think everyday might be here last. Just love her and listen to what she wants to say, its hard but try not to respond unless she askes your opinion. PC is like no other. It is sooo painfull. The family is wrong she is not throwing pity upon herself. Shes in pain and malnurished. Don't let anyone bring her down. Remind her that she is stong becuase PC Cancer is one of the most tuffest to beat. The hard part is not the cancer itself but all the side effects that come with it.
by Concerneddaughter100 on Tue May 29, 2007 12:00 AM
Thank you! I will look into local colon cleansing facilities to see how they can help.
As an update, my mom pretty much eats the junior line of baby food now. She gained four pounds, so she was excited about that. We're hoping the softer foods will help her consitpation issue.
by Caligirl on Tue May 29, 2007 12:00 AM
Get your mom's billirubin levels checked ASAP- yellow eyes are a symptom of jaundice. My mother in law also has PC. Early on we had to have a stent placed (and several more since then!) because she had turned bright yellow from jaundice. The itchy skin could be from a variety of things including her cancer treatments. Your mom might also be having a build up of ammonia in her blood which might not cause her thinking to be clear- possibly another reason why she isn't sticking to meds? We experienced that, too with my mother in law.
Has your doctor mentioned hospice care? My husband's family (mainly sister in law) won't let us start hospice, but I've heard that they do a fabulous job of managing pain. Don't delay hospice- they will help care for your mom & the rest of you who are dealing with this. Hospice also does not mean you're giving up on your mother- she can work her way out of hospice care if she improves. Good luck!
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