jreedhack
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Sorry when I said 3 months it was 3 weeks. Jeff I was going off your last name Taylor before. Your MIL story sounds so much like my mom’s that she may not have been depressed. As we kept asking my mom if she was depressed as she wasn’t eating either and she would say no, but she was sleeping so much. She would start to talk to you and she had to close her eyes. Also, your my mom was like your MIL in that she didn’t let anyone know what was going with her body, which I feel bad because she was doing it for us.
God Bless you and your family, I am right there with you.
So sorry for your families loss. We must fight to get a cure for this cancer.
Taylor,
I know what you are going through as I just went through the same thing with my best friend, my wonderful Mom. I lost my mom Tuesday, March 27th. She was doing fine with chemo and then all of a sudden one day she woke up and was just really tired and felt weak. She went to her doctor and they said that it was probably the chemo catching up on her, as she never had tiredness on chemo, and she was on it for the majority of her 2 1/2 battle with this disease. So, she couldn’t be treated and they said she needed to rest and do what her body was telling her. They did send her for a CT scan on March 15th to see what was going on as her Bili went up. On March 16th the doctor called and said that the tumors began to grow again and we would meet on Wednesday to discuss her next treatment options. So, this was after her being so weak and tired for 3 weeks, in which she couldn’t even walk on her own but needed a wheel chair, as she would get tired, no shortness of breath.
On Tuesday, March 20th my mom asked to go to the ER which I was trying to get her to do for days but she wouldn’t. Myself, my Dad and my brother-in-law took her to the ER. After hours in the waiting room she was taken back and they started doing bloods and ordering tests, etc. When I went to get my mom that AM when my dad called I was like Mom your jaundice, I knew it was not a good sign as even though I am not a nurse I have worked in the medical field and Oncology for 15 years. They told us what was going on and said that the bile ducts were being blocked and would need to do a stent, but they couldn’t do anything until her sodium levels went up as she was dehydrated. We left her at 8:30PM in the ER/ICU and then she was moved to the regular ICU later that night.
We were there at the hospital every day and every night when I left or my dad we left very optimistic. Then when we would leave my dad would get a call from my mom and it wouldn’t sound good. Then on Thursday night my mom called my Dad and said that the doctor just came in and wanted to have a meeting with my mom and dad the next morning. That morning, Friday, March 23rd the doctor told my parents that there was nothing more that could be done for my mom. That the tumor had encompassed the whole liver and there was no way they could do a stent. They gave her a month. It was total shock as all along we heard what they were going to do and I believe from reading other people’s post that more could’ve been done. She came home on hospice on Sunday, March 25th at 5:00 PM, do not even ask and I took care of her all day Monday with my Dad, then on Tuesday March 27th in the AM my dad called and said that my mom didn’t have a good night. She was calling for her mom and she was throwing up bile we believed. I went down and my dad called and they were sending a hospice nurse out. We were not on full blown hospice yet. The nurse came out gave her some morphine and said that we needed to admit her inpatient hospice to get her stabilized since we weren’t on full hospice yet. My dad went in the ambulance, I cleaned up the house and headed down to the hospice, I received a call from my dad that everyone needed to come, so my siblings, their spouses, my uncles, my son and niece and nephew all went. We were all there with my mom. My dad and I left around 5:o0 PM as the nurse told us to go home and get some rest. We got a call at 6:34PM from the hospice that my wonderful, mom passed at 6:30PM as a nurse’s aide was reading to her. This was on March 27th, one month Taylor from when your MIL passed away.
My mom was a fighter, she never complained and she wanted to win this battle. I just feel there could’ve been more done for her. I think there is so little known about this disease that doctors don’t even know what some symptoms the patient is having are caused by. As I was researching the cancer more after my mom passed as I researched so much when she was alive I came to find that those 3 months that my mom was so tired and weak she was dying. Her body was shutting down and no one knew it not even the doctors. Her bloodwork was always fine until her bili went up on March 14th BW and they decided to do a scan. She was having right shoulder pain in October, November, December and she would tell the doctor and NP and they would say take an Oxycodone when it gets bad we don’t know what it’s from, the NP suggested for her to get an x-ray one time during that time but the doctor said no need it won’t show anything. What I found during my research after my mom passed was that people get shoulder pain because the liver doesn’t have nerves so it sends signals out and they are felt in the shoulder. If the doctors would’ve known this back in the late fall, early winter we would’ve known the chemo stopped working as she was getting chemo all the time until she became weak.
I miss my mom so much, but I feel so bad that she kept what she was going through to herself. She never complained she didn’t feel good she would keep going and going. The only time she said something was at the end when she was so tired and weak. The one thing I can say that I am so happy about is that she was not in any pain. She had no pain at all. She was fighter, a warrior, and she we had 2 1/2 years more than some people get with their loved ones, but it still wasn’t enough time. I just keep thinking if they would’ve researched her shoulder pain they would’ve found what was going on and would’ve started her on a different chemo and maybe she would still be with us today. But then again is that being selfish if her getting chemo after chemo which would only prolong the inevitable be fair to her? Even though she told me she was going to fight and do whatever they could find to do for her she was tired. She was only 77 years old. I love you Mom and Taylor and everyone else on this board I know what you are going through and I have been where you are.
I can say though that my mind is more at ease now knowing where she is and she is fine, rather than when she was weak and tired and didn’t know what was going on, my mind never stopped thinking about the what ifs or what’s going on, etc. We are all finally at peace. God Bless!
Hi Matt,
Oh, that sounds so promising. Thank you so much for responding and sharing your wife’s story. Where was she treated?
After her treatment with folfirinox what was the size of her tumor? Were they able to remove all tumors from removing 75% of her liver?
Sorry for the multiple questions but this gives me great hope.
Thank you again and look forward to hearing back from you.
So, happy everything has worked out for your wife.
Jennifer
Thank you Tiah.
Are they planning on removing the tumor now? What has her tumor shrunk to? My mom’s after 8 cycles of Gemzar, Cisplatin shrunk by 30%! Down to 6x 8 cm n the uptake of the tumor went from 19 down to 9. She wins stated on another 6 cycles and will have her last two over the next two weeks and then repeat scans. Dependent on what they show she may have surgery which we are hoping and praying for.looking forward to hearing from you again.
JenniferHi Tiah,
Thank you for responding so did your mom have chemo done to kill the cancer? Do you mean that the entire tumor is dead or what does it mean that the outside is dead? I never heard of this before.Looking forward to hearing back.
JenniferHi Debbie,
Thank you for the information and replying. The information is very helpful. My mom’s tumor was 11 x 9 cm and has shrunk to 8 x 6 cm after first round of chemotherapy. They would not do surgery as they said tumor was too big and wrapped around her vena cava, so they wanted to do the chemo to have the tumor shrink and hopefully drop off the vena cava. She has 2 more treatments in her second round of chemo left and then will have repeat scans done. I emailed the surgeon who said he is looking for it to shrink more and hopefully we will see this in the new scans as he said that the tumor is part in her left lobe and part in her right lobe and he would like it to drop off to one side to go in and remove it. However, we are going to go for a second opinion to a Dr. Kato at Columbia Presbyterian who I sent her scans to and he said he could do the surgery.
So, hoping for the best.
Jennifer
Marion,
Thank you for responding I agree with what you said it depends on the skills of the surgeon, which I do believe Dr. Kato has after doing so much research on him. The surgeon, my mom’s first opinion, I truly do not believe is a skilled surgeon doing complex surgeries-especially the complexity of the liver. I find this as I was told by another surgeon who is CA that the surgeon she went to does mostly pancreatic. Of course that is a surgery but does not have all the complexities that the liver as with veins, etc. Another reason why I know he is not the right surgeon for her is that her main Oncologist said that he will only refer to another surgeon within the University of Pennsylvania and if her first opinion surgeon, Dr. Jeffrey Drebin, who no one seems to know on this forum, doesn’t feel he can do the surgery after her scans that will be done the last week in April than he could see if another surgeon, who is a more aggressive liver surgeon, Dr. Douglas Fraker would do it. However, he doubts he will since they are colleagues. So, right then and there I know that he is not the one, neither of them are and Dr. Kato has the experience with the liver, has done the complex surgeries, reviewed her scans after her first round of chemo and said he could do the surgery then, so he will have all her new scans when she goes and sees him in person on the 9th of May.
I know so many people think of the University of PA as a top hospital but it is quite amazing how it is not even mentioned by anyone in the forum. (I know of it because I live in Philadelphia.)
Thanks,
JenniferMarion
In my readings on the board I did not see anyone that had a resection when the tumor was near the vena cava or part in right n part in left love. Have u seen it? I have spoken to Dr. Yuman Fong who is now at the City of Hope in CA that is how I found Dr.Kato in NY. Dr. Fong said that no matter where the tumor is located even near the vena cava it can be resected as they have come along way over the past year/s in surgeries for CC. Dr. Kato reviewed Her scans that were blurry to him and he said he could resect so consult May 9th with Dr. Kato.Curious of what u have learned about resections n near the vena cava.
Hi,
Can anyone share with me the size of their tumor and the involvement of it in the liver -right lobe, left lobe, vena cava, etc. My mom was dx with CC and is headed to her last 2 chemo tx’s and then PET and CAT scans. I am looking at Dr. Tomoaki Kato at Columbia Presbyterian as the surgeon for my mom as I am not happy with the surgeon she saw first and said he couldn’t do the surgery. I don’t have confidence per his ways.Thanks in advance,
JenniferDeb,
How large was your husband’s tumor and what was its involvement in the liver? Right side, left side, vena cava, etc. Who did his surgery?Thanks,
JenniferHi,
My mom was diagnosed in late November with CC and when she went to the surgeon he said he couldn’t do the surgery because her tumor was too large and wrapped around her vena cava. So, he sent her to an Oncologist who started her on a cycle of Gemzar/Cisplatin-6 treatments but then 2 more added and then had PET and CAT scans. Her scans showed anything that was lit up on earlier PET was gone and that her tumor shrunk 30% from 11 x 9 cm to 8 cm x 6 cm. The surgeon said that she has made good progress but it needed to shrink more as it was part in the right lobe and part in the left lobe. So, she started on her 2nd cycle of 6 chemo treatments and will be having her last two next week and the week after and then repeat PET and CAT last week in April. We are hoping that the tumor shrunk the way the surgeon is hoping to the left or right but I have been doing a lot of research since her diagnosis on other surgeons as I don’t want to have just one opinion.I found many doctors one doctor who was in NY, Dr. Yuman Fong is now in CA at the City of Hope. When I emailed him directly he emailed me back and told me to call him. He said he would be able to do the surgery and there is so much more for this cancer now then ever before. I never sent him my moms scans as she was refusing to go to CA as we are in Philadelphia, PA and she was set on her surgeon. However, Dr. Fong knows the surgeon that my mom is seeing and said that he is more pancreatic than liver-he may specialize in it but not the way liver surgeons specialize in it. So, in reading about Dr. Fong I came upon an article in which he did a complicated surgery while in NY with a couple other doctors and researched them. The doctor I was impressed with was Dr. Tomoaki Kato from NY. I emailed him, he replied back and I sent my mom’s scans to him. He said he can do the resection and this was based on scans from after her first round of chemo not the new ones. So, this gives me hope. I think I have finally convinced my mom that she needs to go elsewhere and you always need to get a second opinion.
She is like your friend she thought when she was going to see the surgeon she would be scheduled for surgery that following week-no her hopes went down. Then she did the chemo and she thought that after that cycle she would get surgery and nope not yet. So, since that time she is depressed, nervous, upset, etc..
I hope this information helps it has been a long 5 months as this came out of the blue but we hope that she will be able to have surgery.
I actually have under the Introductions page Doctor in Philadelphia area and Marion replied with a web presentation actually given by Dr. Kato. See if you can find it.
Hope your friend can find hope and cure.
Thank you so much, Marion for posting this web presentation by Dr. Tomoako Kato. I read so much about him and was feeling he was surgeon for my mom and this confirms it even more knowing that you had his presentation on here.
I emailed a month or more ago and he emailed me back and I sent him my mom’s scans and he said he can do the resection. I am going to schedule the appointment for last week in April or the first week in May since she needs to have her last 2 chemo treatments and then repeat scans the last week in April.
He is an unbelievable surgeon from just reading about him. He is the only doctor that someone has recognized on this board of all the ones I mentioned.
Thank you, Thank you!
Thank you,
Jennifer
