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Has Anyone Ever Been Referred To By Their Oncologist To Go To Palliative Medicine?

A MyLeukemiaTeam Member asked a question 💭
San Bernardino, CA

I have CLL/SLL since 2018. Loss 40 pounds at the beginning of my diagnosis and now I have loss another 30 pounds. Not knowing why has been hard. My oncologist refuses to believe it's because of my Imbruvica or my CLL/SLL, so he is referring me to Palliative Medicine to help me with my weight loss.

November 10, 2024
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A MyLeukemiaTeam Member

Hi Mary, acid reflex / GERD can be extremely painful and can sometimes be misdiagnosed. (I was misdiagnosed with angina before being diagnosed with GERD.) Good that you have an appointment with a gastroenterologist. I hope you don’t have to wait too long to see them.
It’s great that you have a palliative care doctor you like.
Stay in touch!

November 28, 2024
A MyLeukemiaTeam Member

Hi Ginny, I am so sorry it took so long to get back to you. I have had one thing after another come up with my health. On the day of my appointment, I had some problems with bleeding. Making a long story short, I ended up with an abnormal FIT test and waiting to be seen by a Gastrologist. Early last Saturday, I had to call ambulance, because I was having chest pains. Pains was probably Acid reflux, still being determined. My Palliative Care appointment went well. My doctor had excellent listening skills and was interested in what I was saying. She asked a lot of questions about my life, eating habits and health, etc. I felt like I was in therapy. lol She was concerned about my weight loss and prescribed a medication that will help increase my appetite and gain weight. She said she works with a lot of cancer patients and helps them with their side effects from their treatments. I see her again in January and if I need her for any reason to message her. Looking forward to this helping. Happy Thanksgiving to you and your family.

November 27, 2024
A MyLeukemiaTeam Member

Hi Ginny, it's been a while since I have posted. The Gastroenterologist said the bleeding could have been due to constipation since my previous scans and test didn't show anything alarming. I go back to see him in March. According to my Palliative doctor I have gained 7 pounds from the medication. I see her every two months. After the previous bleeding problem, I started having so many bleeding problems. I kept getting nose bleeds, blood vessels kept bursting in both eyes, massive amount of bruising. Had symptoms of a UTI and went to my doctor, Urgent Care, Emergency and many other doctors and all said I didn't have a UTI but had microscopic blood in my urine. Was referred to a Urologist and had a cystoscopy done, no cancer. She said the microscopic bleeding could be from my Plavix and Imbruvica. I messaged my doctor, and a nurse called and told me to stop the Imbruvica for two weeks to see if that helps. Well before I could get to the two weeks I was drained, no energy at all, I started to have night sweats, and my lymph nodes were going crazy. I had seen my Palliative doctor and told her about my symptoms, she messaged my doctor and told him. I was told to go back on my Imbruvica. I just had an appointment with my Oncologist and told him I wanted a different medication. His supervisor (which is the attending doctor) said "no". He said Imbruvica has kept me in remission for years and other medications will have the same problems with bleeding. After going around and around with him, he agreed to lower my dose of Imbruvica and see if that helps with my bleeding problems. I am on trial for a month and will have blood test and see him again. I have an appointment with my primary care doctor before my appointment with him and I will ask for another urine test to see if I am still having microscopic bleeding in my urine. Hopefully all this works and my bleeding problems are cleared up. If this doesn't work out, he is going to put me on what he calls a "treatment holiday". I know from previous experience that is not going to work. Sorry for the long message. I have been so frustrated with all of this, it's feels good to finally talk about it.

14 hours ago
A MyLeukemiaTeam Member

I think if you are eating and losing weight then your body is using a lot of energy? This energy loss could be to feed excess cells which require energy to do what ever the cells are doing? I hope you can resolve your energy loss and why your eating is not providing enough energy to maintain a healthy weight?

November 12, 2024
A MyLeukemiaTeam Member

Let us know how things go!

November 20, 2024

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