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This thread caught my eye. I stay up at night to try to figure out what my mom did that could have caused this. she was always very healthy. My mom believes it was the stress of this recession, she is in the real estate industry, that caused her immune system to shut down. Could it be that she eats seafood? Lots of cases in Asia. Could it be she was a hairdresser for 33 years and all the chemicals she had to breath in? I have no idea. The doctors also say it is not hereditary…I do not believe this at all. My aunt passed away from this cancer three years ago. She was 87 and my mom is only 63, but how do two people from the same family get such a rare cancer.
JenniferS, I understand what you are saying. For 9 months, since my moms original surgery, I have had an awful pain in my side that makes me keel over. For 7 of those months I took the pain to be sympathy pains for my mom. After dealing with this for 7 months and finally being on vacation I thought it would disappear and that was when I finally went to see the doctor. After the initial x-ray, I was just full of poop…you have to laugh at that! But after 2 weeks it continued. Doctors have done ultrasounds and even a ct scan, but nothing. I started seeing a chiropractor for the pain. I did have a rib that was out of place. It helped for a while. but since last Tuesday when my mother’s doctors told her that she should focus on the quality of life and not do anymore chemo, the pain started again. Stress does a lot to our bodies.
One of the best ways to protect yourself is to reduce stress…but then again, I think of all the children that have horrible types of cancer. Do they really have that much stress???
Hi Patty,
Her is a name of a clinical trial you can look up S0809, “A Phase II trial of adjuvant capecitabine/Gemcitabine chemotherapy followed by concurrent capecitabine and radiotherapy in extrahepatic cholancicarcinoma (EHCC)). This was the clinical study that they offered my mother after her liver resection.
Also, I did read somewhere that bok choy (not sure about spelling) is a good food to eat. I am going to try some soup for my mom this weekend. She likes soup and I am at a loss of what else to do.
Best wishes to you and you will be in our thoughts.
Thank you kriss00j…I wish you the best of luck with that cocktail. And I am thrilled it is working with you. That was the chemo that my mom just ended. I don’t understand how her tumors can only get bigger with more chemo…and radiation. It would be a success to us if it just remained the same size. I think my mom has decided that she will try the next chemo which is Irenotekin (phonetically spelled, sorry) with 5FU. He said it will take a lot out of her, but she knows she just has try try it a couple of times to see if it has done anything.
She does want to keep fighting, but then she gets really sad. Poor thing is still stuck in emergency, day 2. No rooms available yet. She has had transfusions, plasma, waiting on colonoscopy and ascites drainage.
You Kris are in my prayers and keep up the good fight. I’m thrilled it is working for you.
I had to share this with you. It was a good thing I had just spent the last couple of hours with my mom and she seemed to be feeling pretty good, otherwise I would have a breakdown.
As some of you know from my posts, my daughters fathers side of the family has a few doctors and nurses. You’ve told me I should consult with them in regards to some of my moms issues she had. So today, when I was picking up my daughter, I was talking to her grandfather, a well respected urologist, and asked if he could suggest an oncologist to take a look at my moms records in order to have a third opinion of what was happening. He looked over her ct results. I had them in my purse from visiting my parents. He asked why my mom would want another opinion. I told him that she was worried because her second opinion doctor stated that if this chemo did not work there would be only one more to try and then they would be unable to do anything. His response “yes, if this next chemo didn’t work the next thing would be death.” I guess not what you want to hear. Maybe doctors take a class in being so cold. Or maybe I just can’t accept the truth. Then he went on to tell me about the grief stages of cancer.
So now you understand why I come to you guys for support. It saves me and you all build someone up instead of knocking them down. We all know the time will come (for all of us) but all we have is hope…and I choose to hold on to all that hope for as long as I can. I guess we just keep trying to find the doctors that will tell us what we want to hear.
Again, thank you all.
You guys are the best! Really, much more helpful than any doctors. Isn’t amazing how after you are learning about all this you think to yourself, “Gee, I should have went to medical school.” Again, thanks.
There are so many stories on this board that are encouraging. Those are the ones I chose to tell my mom. I don’t tell her any of the negative stuff. Why? We can all only hope for the best. We too have never had any encouraging words from doctors. Where we go for our second opinions, the dr. tells us there is more we can do if this round of chemo isn’t working. My mom has felt down lately because she just doesn’t feel well and has not has a break from chemo every other week for the past 4 months. She has friends that have gone through rough cancer experiences and have pulled through. Talking to them have helped her a great deal, especially when she is feeling down. But there are success stories where tumors have been inoperable and people were given a six month period…those people are still around to talk about it 5 years later. Keep the positive vibe going. Hugs and prayers to you and your family.
Thank you PCL1029, and thank you for asking the questions, I don’t even know what to tell someone. I appreciate the assistance.
My mom has intrahepatic, her original tumor was on her gallbladder and attached to her liver. They took out her gallbladder and a third of her liver in November. In January she starte Gemzar and xeloda and had 3 rounds and then they did 30 rounds of radiation. After radiation they did one more round of chemo. Then they found two new spots. One on her liver and one on her pelvis. In June they started the gemzar/cisplatin. She goes in on Tuesday gets hooked up for a few hours and then leaves with a pump that continues to pump chemo into her for two days. The following week she goes T,W,Th, and F for her white blood cell shots (she doesn’t want to give them to herself). Then she starts the process over. She has had about 5 sessions. We are in Los Angeles and she goes to Kaiser. (I know, not the best choice), but we always go to USC NOrris for her second opinions and to make sure Kaiser is doing what they are suppose to. She has one more year until she can receive medicare and be able to go wherever she likes.
She is just use to doing so much that she has a tough time dealing with just resting. At least today I stopped by to visit and she was eating (she even gained some weight) and then we just sat in bed, she seemed to be doing better than she sounded last night. The doctors should be doing another scan very shortly. They want to do another procedure, sticking a tube down my moms throat to see if anything is bleeding inside her, since she still feels very weak. She just wants to feel a little bit better before she does that. She kind of tells the doctors what to do…which seems like something you need to do with this disease. This is why I rely on this website so much.
Thanks…I never even considered doing a search here. It was very helpful. She has a pretty good attitude and gets really mad at the doctor when she can’t get her chemo. There has been a couple of times she was unable to receive it because her blood count was down. She also got upset with the doctor because they want to lower her dosage…she wants the maximum amount…she wants to beat this.
And thank you PCL1029…I forget about them sometimes. They are my daughters other grandparents that I do not have a lot of contact with, but they have been very supportive and helped out my mom a lot, especially with the original diagnosis. But I will give you my moms background anyway. My 63 your old mother is currently on Gemzar and Cisplaitin (I think there might be something else in the mix, but I’m not sure) She was first on Gemzar and Xeloda, but that didn’t work as two spots returned. She was stage 3, but since it returned after her surgery she is now Stage 4. Her last tumor marker was down to 10,000 from 11,000.
Again, thank you both for the reminders that the information is her. I appreciate it.
Thank you all for your posts. Luckily we have family members who are doctors and nurses. I couldn’t understand why they weren’t worried at the facility where my mom was. My mom’s nose has been slightly bleeding last week. I guess this is because her platelets were low. Since her nose was bleeding that could also go down her throat which caused her to throw up. It wasn’t a large amount, but when it caches you off guard, a person would flip out. At least I know I did. Nothing else has happened since then.
I appreciate all the responses so if this happens again, I can bring it up.
Thank you PCL1029, I meant to ask the infusion nurses today what her numbers were for those tests. They are doing her blood again and I will make sure what those numbers are. I don’t know what those numbers mean. The Coumadin people did call my mom last week because they wanted to talk to her doctor about her getting off of it with in the next six months. However, her doctor told them no, she will be on it for life. This flipped my mom out because she thought the doctor was saying she wouldn’t be alive in 6 months…we had to calm her down about this.
Again, thank you all for your advice.
Becki, thank you for your post. It is helpful for us who do feel lost in how to help our family members who have this. I can’t get the energy to do anything more than flip the channels on the t.v. However, when I am with my mom I am very upbeat and positive. It is only natural to have these feelings. So thank you for posting…I don’t feel so alone. I have been fortunate to have the summer off of work so that I could be there for my mom and pretty much just get charged up for another year of work. Like I said all I want to do is either take care of my mom, watch tv or sleep. After several visits to the doctors I did find out that my iron level was extremely low as well as my thyroid was completely out of whack. I do get tested regularly for a basic thyroid test, but they did more detailed test. This type of stress can take a toll on your body, so please don’t forget to take care of yourself.
I also have a lot of trouble sleeping. When I am working I usually have to take a melatonin to help get to sleep. I have been okay the last couple of months being off of work, but have resorted back to the pills the last couple of night. Be careful if you take something for sleeping. I did have a doctor give me ambien and it made my depression so much worse. I wanted to drive my car into a wall…not because I wanted to kill myself, more because I just needed a break from thinking about my mom and this disease, my teenage daughter was having problems, and of course, none of this helped the relationship with my husband.
I just wanted to share all this with you because I want you to take care of yourself just as much as you would take care of your mom right now. I know, easier to say than do. I had someone tell me to try HTP (I think that is the name of them). It is a pill that you can find at whole food. I call it my happy pill. It releases seratonin in your body to boost your mood. It helps…I’ve been turning my house upside down to find the pills again.Good luck to you and your family. And if you have any tips on how you have helped yourself, please share…for the rest of us.
Thank you all for your suggestions.
Marions, yes my mom goes to see Dr. Lenz, who was also my moms Dr’s mentor. We take his info and bring it back to my mom’s Dr. at kaiser. I’m glad to hear that we may have the right information coming from somewhere. Dr. Lenz did say he treats lots of cc patients.
Besides for this webiste, the following website has been very helpful for me when my mother was first diagnosed.
http://csn.cancer.org/node/167397
If you look through the message, there is a lady named Lily. She was an amazing help when I was first learning about this disease. She was diagnosed at stage 4. She went through a whole year of chemotherapy before her tumor was small enough for them to operate on. She had her surgery and more chemo and has been cancer free for 5 1/2 years. Yay! Of course when we mention this to my mothers doctors they tell her that this is a fluke. But it is those cases that give others the courage to continue.
And Marions is right, someone should go with him to hear what the doctors are saying. Because we all take things in a different way, and he might get stuck on the negative. Just keep reminding him of the positive
Thank you Maria for your your information. She (and us) believes she needs more time on this medicine. And research that I have done shows that tumors always look worse before it gets better. Thank you for sharing your positive story. I appreciate it.
I wish we had the opportunity to check out other facilities. At least her doctor is more than willing to listen to what the other doctor advises. We also went to the other doctor to make sure they are doing what they should be doing for a treatment plan.
Again, thank you.
