May 9, 2018 at 4:24 am #96938middlesister1Moderator
Dear Jeff and Jennifer,
I am so sorry for the losses your families have suffered. Although strides are being made for this lousy disease, they are too slow and not enough to help those who are fighting today. We lost Dad to cancer on 2017 and what still helps me on bad days is realizing that our grief is so hard because we loved him so much.
My heartfelt condolences are with you,
CatherineMay 8, 2018 at 9:34 pm #96937bglassModerator
Please accept my condolences for your beloved Mom’s passing, and my hopes that you and your family find peace and comfort knowing how steadfastly you stood with her and cared for her throughout her journey with this tough cancer.
Sharing your experiences with your Mom is so helpful for others coping with a CCA diagnosis. I appreciate that you posted her story for our community. Please stay in touch.
Regards, MaryMay 8, 2018 at 2:33 pm #96936jreedhackParticipant
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.May 8, 2018 at 2:24 pm #96935jreedhackParticipant
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!April 30, 2018 at 1:46 pm #96901beatrizParticipant
First and Foremost, my heart and love is with you as I know how hard this stupid disease is and how hard is to loose a loved one.
Yes! I agree with you 1000% with Cannabis and urge anybody reading this post to please seek medical guidance from a cannabis doctor as the dosing is super important and it never stops it just gets adjusted.
We need to support any clinical trials that address this awful disease and any cancer with Cannabis. I am hopeful that if the clinical trials abroad with companies like Zelda Therapeutics (I am sure there are other cannabis companies but we need to compile this information and make it centralized for everybody access) are showing promising results that they are brought back here to the USA as clinical trials too as these are no longer “alternatives” treatments but rather “holistic”.
April 28, 2018 at 8:41 pm #96898bglassModerator
- This reply was modified 2 years, 3 months ago by beatriz.
I am so sorry to hear the sad news about your mother-in-law. You and your family were so supportive throughout her treatments — I know this must have given her great comfort.
Please accept my condolences and prayers for your family.
Take care, regards, MaryApril 28, 2018 at 7:36 pm #96897taylorjmParticipant
So my MIL was diagnosed a little over a year ago. One large tumor in the right, several small tumors in the left. She started taking high THC cannabis oil capsules and gem/cis chemo for 6 months. The small tumors were gone, the large tumor was smaller. They stopped all treatment, watched it for another 6 months. Everything was stable. She became depressed, which would be pretty typical. Nauseous and short of breath. Started taking anti depressants. Had a loss of appetite and very sleepy when starting the meds. Wasn’t eating or drinking enough and became very weak. Went to ER because she was getting too weak to stand. Went into cardiac arrest in the ambulance, then again a few more times in the night. Kidneys stopped working due to dehydration. Found to have a partially collapsed lung. Was on a ventilator. Decided if she codes again, not to revive her. She passed away Friday morning at age 74. While in the ER they did ct scans. The liver tumors were back and a little larger.
While she was taking larger doses of the cannabis oil, the tumors were shrinking and disappeared. Then while on a smaller dose, they were stable for 6 months. Then, after stopping for a month, they started growing again. I’m convinced that cannabis is the way to beat this disease, and would encourage people to try it. It’s sad that in the end that that she was able to fight off the cancer, and was winning, but when treating for depression, the medications take so long to work, that sometimes they just don’t work fast enough. We knew she wasn’t eating much, but the side effects of the anti depressants had her sleeping 20 hours a day, and she never let on how much it was taking a toll on her body. Keep up the good fight!
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