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I wish I was closer. I did pass the word on through my Facebook page and asked that it be passed on that way. Thanks for posting this.
When my mom did that treatment she felt great during the treatment process. My mom went in for a few hours and then left the hospital with a pump for two days. The pump was then taken out. She would start the process on a Tuesday. On Saturday and Sunday was her worst days. She perhaps only got sick once, but just didn’t feel well the whole time. She looked forward to the days she got the chemo, because that was when she was feeling her best.
With more sessions, my mom got more tired. Also, the chemo took a toll on my moms taste buds. Food still tastes horrible to her. Beef him up now. However, the doctors suggested my mom drink ice water to numb the taste buds. But my stubborn mother won’t drink ice water, as she is worried about arteries hardening;) Then they suggested she gargle with it, but she won’t. The nurse just suggested that we try artificial saliva, to help with the taste of her food. We haven’t tried it yet. That will be on my agenda tomorrow.
Best of luck with treatments.
That is wonderful that you had been taken such good care of. Best wishes to you for an easy treatment, and quick recovery.
Pepe…we are thinking of you and hoping for good results tomorrow.
Currently my mom is having bad pain with bowel movements or the lack of them. They now have my mom of 4 stool softeners a day. They also gave her laxatives, but that just gives her the runs…and it still hurts. She feels it is gas pains, which can be caused by the pain pills.
Also, my moms legs hurt if you pat her. I thought that was from the water retention that she had, but I don’t know.
My mom is hoping it is not progression of the disease as she wants to enjoy a little bit of time. She has had nothing but a stubble since she went in for her original surgery last October. I think we all go directly to the worst case scenario, but try not to. He needs to get over the infections too. The social worker that came to our house the other day explained my moms fatigue and said, “Even though you are not doing anything, your body is fighting a battle on the inside, that is why you are so tired.” It made complete sense.
Keep us posted tomorrow.
My whole post just disappeared while I was typing, so I will try again…maybe a shorter version.
Dear Pamela, I am so sorry that both you and your daughter are on this journey. She is so young to be having to deal with this. Much too young. I feel my mom, at the age of 63, is too young for this. However, this is also what gets my mom through this…knowing that it isn’t me or her grand daughter going through this. You both will be in our thoughts and prayers. I just wanted to let you know, I try so hard to find common characteristics in these cases. The only thing I can seem to come up with is that your daughter really has her age on her side. It seems that younger adults, say under 50, respond better to treatments. Again, this is just from the reading I have done. I am going to pass on anther message board that has helped me also.
http://csn.cancer.org/node/211058
There is a lady that is more than happy to share her story. She was diagnosed and given 6 months as her tumor was unresctable, she is here to tell her story 5 1/2 years later. I do not know where I would be if it wasn’t for this board and that board. Everyone has been so helpful.
As for your crying, I think that is normal. It is all I do when I am by myself. And I like to be by myself a lot when I am not with my mother. However, I do notice that I do not cry as much when the doctors are not around. Since my mom got out of the hospital a few weeks ago and I met with her main doctor, I was crying non stop. We all would cry together. then we met with our second opinion doctor who told us the same thing, and I kept crying. When I got the letters from the doctors, to give to my work, letting them know that Ineed to help care for my mother, cried constantly. However, I stay with my mom two days during the work week and my dad takes over the other 3 days. weekends we are always coming and going. I see her, and yesterday she was doing so much better. I don’t understand the doctors and there time lines and everything just seems okay and all will be well.
You can’t let the doctors decide how you should feel…they just bring you down, most of the time. Even my family members that are doctors do the same.
Just know that you have lots of people here that are rooting for your daughter…and you too, to give you the strength you will need.
Hugs to you.
We did that when my mom was first diagnosed. The doctors had no problem with it and really shouldn’t have a problem with it. This is a very sensitive time for everyone involved. We all hear something different. You just want to record the information so that you can go back to see if what you thought you heard, you actually heard.
After are initial visit the doctors always just called my mother to give her an update…of course, she told us what she heard, which is always a little different than what the doctors said. We had to tell the doctors to call us with update, since they just always upset my mother.
Best of luck on your doctors visit.
Just know that others are thinking of you and hoping you get over this hump. I wish I had words to help. That is all we hear from people, “I wish I knew what to say.”
I just look at my mom when she is having a rough time and just say, “This Sucks!!!!” That is all I have.
Feel better.
Hi Lainy, The walk is on May 19th in Santa Clarita. It is about an hour and a half from Orange County, just depends which part of Orange county they are in. It is a great event.
Marion, thank you for the support. I appreciate it. I will ask you for more support when the time comes and would love the use of a banner. I have a couple of other ideas I will post later.
I do have to find out how the fundraising goes. I have ideas on fundraising and I would like to be able to split the fundraising efforts between relay for life and the cholangiocarcinoma foundation. My mother in law made beautiful crystal purse pulls that I gave away at my mother’s BEAT cancer party. They were a big hit and I was hoping to be able to sell those to make some extra money, besides for the sponsors that support the walkers.
Any other ideas are always helpful. This website has been a blessing during this time and I want to be able to support you along with relay for life.
Stable is always good. Good luck with the Gemzar/Xeloda. My mom had minimal side effects from that combination. Just a little tired, but not really nauseous.
Don’t worry about the port. After my mother had her initial surgery (they removed her gallbladder and 1/3 of her liver), the nurses came in almost hourly to take my moms blood. My mothers arms were all swollen and bruised. However, she had the port put in and it has made labs so much easier. It was hard to adjust for at first, but she does not want to have it removed. She did have some complications with blood clotting and her doctor wanted to have the port taken out now that she is no longer doing chemo. However, my mother refuses to have it taken out.
I am glad to hear that you are seeing Dr. Lenz. I do love him and Talin. His nurse is great. We would see Dr. Lenz for my mothers second opinions…just to make sure her doctor’s were doing what they were suppose to be doing.
Good luck on them inserting the port…in a few months you will realize it is one of the best things you could have done, and you will wonder why you didn’t do it from the beginning. Will you still do Gemzar from the port?
I’m thinking of you and hoping for the best in your situation. Everybody on this board has been amazing. I have to say for a second I thought this could have been my dad posting this message as my mom was diagnosed the same time, with no chemos working. She has been struggling and they just drained her fluid…but a little less than half the amount that your wife had.
I am thinking about you and your young children. The social worker that just started coming to my moms house has helped her a lot. This all started through palliative care, which has been wonderful. They just started this week.
I am so very sorry to hear about this Nancy…we are in the same place with my mother. Sometimes, when I am not with her I fall apart. I try to stay strong for her. But if she falls apart we cry together. Then other days, I just don’t believe it. I guess I am in denial.
Stay strong for yourself and be able to care for yourself too.
I know with the clinical trial they wanted my mother to start, if the cancer came back anywhere, you would be taken out of the clinical trial. My mom opted for not doing the trial, however, they did the exact same treatment as the trial on her. This treatment did not work. I feel she would have been more disappointed being taken out of the clinical trial. Best of luck with the next chemo regimen.
My mom just started palliative care, the came to the house yesterday. She felt the same way about Hospice…as I feel the same way too. I watch my father go through hospice, it wasn’t fun, but they were very helpful. This was also about 20 years ago. The difference the doctors told us was that with palliative care you can continue your treatments, you just need to be housebound. With hospice care you can no longer be receiving treatments.
The nurse was so sweet that came to the house yesterday. However, they spent too much time with my mom. She wants them in and out. However, my mom feels that she can do a lot more than she actually can.
Good Morning,
This too was the chemo that my mothers oncologist said would be our next choice, if she decided to go that way. He did say it was very hard on the body. Thank you PCL1029 for giving more of the details. we did meet with Dr. Lenz from USC for a second opinion. He knows my mom wants to fight this. He did not even mention this chemo. He gave us three options, two different chemise by themselves and the third was a combination of the two. I would post them here, but his writing is not legible. I tried to look them up on google to find out the side affects, but was unable to get close enough to the spelling. He will send a copy of his suggestions to my mother and also to her doctor…as soon as I get it, I will post it here. However, he did mention that he has no idea how it would work as it is still in the trial stages.I wish doctors had more answers. At my moms appointment on Thursday all I could say is why, how did she get this and why is her body not responding to the chemo.
I wish you the best of luck with the new chemo regimen.
