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Can Liposomal Doxorubicin cause Excruciating pain?

Angel86 profile image
8 Replies

Hi all, so this is my second post. My mom had recurrence and she underwent 12 chemo cycles of carboplatin and gemcitabine along with avastin .Soon after completing the chemo which was every week they took a ca 125 which was still high. Despite of taking these chemo her ca 125 didn’t go down, and so they took a ct scan which revealed deposit of cancer cells in mesentric layer and nodes were involved as well. Previously she had nodules in liver which was gone this time and that’s why they gave avastin. So I think it helped. But as she has bit of deposit now and her ca125 is 131. They started her on Liposomal doxorubicin. She had her first dose on 24th December and after three days of taking it she’s having excruciating pain in her abdomen, which isn’t subsiding. She can’t eat food. Took her to hospital and doctor says it’s because of the chemo she’s having pain. The pain is located under the breast mainly. She’s on tramadol but it’s not helping her either. I feel so helpless. It’s painful 😓 to see her suffering. Before chemo she didn’t have any pain . I don’t know if it’s because of the Liposomal doxorubicin. Anyone knows anything about this drug? God bless you all!!

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Angel86
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Tesla_7US profile image
Tesla_7US

Has your mum's doc ruled out bowel obstruction? or bowel perforation? I ask because Avastin can cause these problems months after having it. I've had 7 years and 5 types of chemo including liposomal doxorubicin and NEVER had excruciating pain. I've also refused to have Avastin as I've had anastomosis and avastin can cause that to leak which can lead to sepsis or peritonitis. Get a second opinion for yer mum.

Angel86 profile image
Angel86 in reply toTesla_7US

Many Thanks for replying! I am not sure about the bowel perforation and obstruction. Wouldn’t it be shown in a ct scan. She had a ct scan last month and it didn’t show anything. Doctor said she might have adhesions and that can cause pain. How to rule out if she has perforation? Do you know anything about it, please let me know. She had 7 cycles of avastin and stopped. She was supposed to have 12 actually. The reason to stop was her ca 125 was still high. Will seek for a second opinion. You take care now ❤️

Tesla_7US profile image
Tesla_7US in reply toAngel86

Dehydration can cause constipation which can be extremely painful. Can your mother drink fluids? Electrolytes such as Nuun tablets dissolved in water work very well for my muscle pain. Could your mom be having appendicitis? Heartburn/acid reflux can be a serious problem for chemo patients. I've had that so bad I thought I was having a heart attack. OTC Pepcid tablets have worked very well for me. Please consult her doctors. There can be many reasons for excruciating pain. I am not your mom and I might have a different pain threshold. Don't give up! Keep advocating for her and find the root causes.

Angel86 profile image
Angel86 in reply toTesla_7US

Thank you so much for sharing your thoughts and advice! This disease is so awful 😞. It literally hurts to see the suffering. Wish a complete cure was made for this illness. Just hoping everything gets better. She complaints of pain under her breast and on right side, it’s the liver there and she had nodules in liver before the 12 chemos. The new ct scan shows no nodules and liver is normal. So I am just wondering what is causing this pain. She’s taking pantoprazole and also liquid lactulose for constipation. I will attach her ct scan results here. God bless you and heal you 🙏🏻❤️

Latest CT scan report
Sashay2020 profile image
Sashay2020

Yes, Angel. For ten days after my first infusion of Carbo/Doxil, I suffered excruciating abdominal pain. It was a near constant gnawing pain. I would take joint pain over this any day! I took 5 mg hydrocodone tablets prescribed by my oncologist. It helped some. Anyway, I decided to try fasting a day before chemo and for a couple of days after because some ladies said this helped them. . I was too hungry to fast, but I did limit what I ate. It helped me. I did much better with the pain until I began to eat high fiber food again and had a strawberry shake, then that terrible pain returned. Last night I ate a couple of scrambled eggs and I felt better. Chemo pretty much kills off the good bugs in our gut. My suggestion, avoid dairy and eat lightly and low fiber for a few days, This helped me and I hope it helps your mum. I just woke up. It’s been eight days since chemo and I am not in pain. I sure hope your mum can get this pain under control. Please let us know how she makes out. Best wishes from Louisiana

Sashay

Angel86 profile image
Angel86 in reply toSashay2020

Hi sashay,Thanks for sharing the experience you had. I think everyone reacts to the drug differently. I spoke to her doctor and he says lipodox will be effective in 8 weeks. And this was her first dose. So it will take some time for it to act. And sometimes it’s too much of overthinking which is toxic for us. I stress myself a lot thinking about it and what can go wrong. It’s not possible to be positive all the time. I just hope everything goes well! I have shared everything you said to my mom and will see how it goes. Thank you so much dear for sharing it and I will let you know. You get well soon!! God bless❤️

Jubes59 profile image
Jubes59

Hi Angels86. I have had a terrible time with Doxil My stomach it intestines burned where your moms did. I finally found a doc who suggested Aleve twice a day. I did this and it helped the burning. If it didn’t then they were going to give me decadron for 4 days. I was put on laxatives that made my gallbladder very angry. Thought I was going to die. Stopped taking and trying to drink more water and eat lots of fiber. Also taking aloe Vera juice. I have developed a very distended abdomen and believe I have lots of ascites. Just praying all this suffering from this drug will help with this.

Angel86 profile image
Angel86 in reply toJubes59

Hi Love,I am sorry to hear about the suffering you are facing now. I am just praying for all the people who have been affected by this condition. My mom was taken to hospital recently and they found out she’s having subacute intestinal obstruction. The doc said they can’t do a surgery now as she’s undergoing chemo. So they are just doing conservative management which is IV fluids and NPO. They have put a ryles tube to aspirate all the air and fluids which is causing the blockage. She’s also diagnosed with covid now and I am really worried about her. I just pray to god to keep her healthy and happy. Thanks for sharing! Lots of love and prayers ❤️😘🤗

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