Aa
Mom's out of remission :(
I need support right now in a big way. I'm reading posts, andreally want to contribute, just can't motivate.
I've posted this before but we have more news. My mom has chronic lymphocytic leukimia AND multiple myeloma. She is also a breast cancer survivor. She's had a tumor on/in her leg for about 4 years now. It's about 5 inches big now. They get concerned at 2". She finally went to the doctor about it. He doesn't have all the test results yet, so we still don't know a lot, but we at least know the CLL is out of remission. Her white count is 26,000... normal is 6,000 - 10,000. My worry with the WBC is that the leukimia will elevate it but a progressing myeloma could decrease it so where is really at?
Did my research. They are checking her GI tract because they are looking for "Richter Transformation" this is where the CLL transforms into an aggressive lymphoma. It can cause tumors of lymphocytes to form in other parts of the body and not just the lymph nodes, such as the GI tract. That could be what the tumor in her leg is as well, or it could be from the myeloma and be an extramedullay plasmacytoma. Either way, they're malignant.
The way her whole spine hurts makes me worry that they are both out of remission. Myeloma causes bone pain. We don't have the results of the bone scan yet or the MRI and her oncologist just reordered the Endoscopy/Colonoscopy. He had her wait on those until the blood work came back. My sister (who has MS and maybe lupus) is a wreak, so I'm trying to hold it together right now by researching and understanding the terminolgy so mom can talk about it with me and I can explain things to my sister.
It never ends.
I've posted this before but we have more news. My mom has chronic lymphocytic leukimia AND multiple myeloma. She is also a breast cancer survivor. She's had a tumor on/in her leg for about 4 years now. It's about 5 inches big now. They get concerned at 2". She finally went to the doctor about it. He doesn't have all the test results yet, so we still don't know a lot, but we at least know the CLL is out of remission. Her white count is 26,000... normal is 6,000 - 10,000. My worry with the WBC is that the leukimia will elevate it but a progressing myeloma could decrease it so where is really at?
Did my research. They are checking her GI tract because they are looking for "Richter Transformation" this is where the CLL transforms into an aggressive lymphoma. It can cause tumors of lymphocytes to form in other parts of the body and not just the lymph nodes, such as the GI tract. That could be what the tumor in her leg is as well, or it could be from the myeloma and be an extramedullay plasmacytoma. Either way, they're malignant.
The way her whole spine hurts makes me worry that they are both out of remission. Myeloma causes bone pain. We don't have the results of the bone scan yet or the MRI and her oncologist just reordered the Endoscopy/Colonoscopy. He had her wait on those until the blood work came back. My sister (who has MS and maybe lupus) is a wreak, so I'm trying to hold it together right now by researching and understanding the terminolgy so mom can talk about it with me and I can explain things to my sister.
It never ends.
I can completely relate to coping via research. My friends all tease me about it but as soon as someone they love is sick they are on my phone wanting to know what I know or what I can find out. Funny thing is, I can sometimes nail the dx. I shoulda gone to med school ;)
I agree with your advice to your mom to not accept a no because it is easy when so many other docs have said yes, it is a tumor. This is too important to go with what we want and hope it to be without proof. I am keeping you in my thoughts and prayers. Please keep us updated.
I agree with your advice to your mom to not accept a no because it is easy when so many other docs have said yes, it is a tumor. This is too important to go with what we want and hope it to be without proof. I am keeping you in my thoughts and prayers. Please keep us updated.
WOW, I feel your frustration. The hospital that I was taking my grandmother to kept saying that she just had arthritis but she kept getting worse so I took her to a different hospital and found a nother doctor...So then 3 days later we found out that she in fact did have leukemia and didnt have but a few weeks to live, 2 weeks later she passed. I wish I had answers for you because I know how I felt when we we're getting the run around.I hope they figure it out sooner then later. Good Luck, I'll keep you and your family in my thoughts and prayers!!!
Update.
Now they are telling her she doesn't have myeloma, just severe osteoporosis along with osteoarthritis. She was also told the lump on her leg isn't a tumor, even though 3 different doctors (one a surgeon) told her it was. I told her she should still get a biopsy to be sure. They told her the lumps in her breast were NOT tumors and they were dead wrong. She ended up having a radical mastectomy with lymph node removal! There is still a chance the lump could be a lymphocyte mass, which is malignant. As for the CLL - they are going to monitor her blood work every 6 weeks and she has to get the endoscopy/colonoscopy in November. They are not going to treat the CLL just yet.
D.
Now they are telling her she doesn't have myeloma, just severe osteoporosis along with osteoarthritis. She was also told the lump on her leg isn't a tumor, even though 3 different doctors (one a surgeon) told her it was. I told her she should still get a biopsy to be sure. They told her the lumps in her breast were NOT tumors and they were dead wrong. She ended up having a radical mastectomy with lymph node removal! There is still a chance the lump could be a lymphocyte mass, which is malignant. As for the CLL - they are going to monitor her blood work every 6 weeks and she has to get the endoscopy/colonoscopy in November. They are not going to treat the CLL just yet.
D.
Thank you again! I have posted on both forums with questions and have not gotten a response. I've even bumped my own questions up. And I've posted on a cancer specific website and have recieved nothing!
Just having someone listen to my concerns is very helpful. Understanding the medical aspects is how I cope... don't know why but it helps.
D.
Just having someone listen to my concerns is very helpful. Understanding the medical aspects is how I cope... don't know why but it helps.
D.
I was just thinking about you last night. I had a hunch you were busy with your mom and that was why we had not seen much of you lately. I am sorry about the latest on your mom's condition. You had a lot on your plate before this! I know you are doing everything you can to be the glue for your family. You are a good daughter and sister although I know it is wearing you down, you still keep going for them.
We are here to support you in any way we can in this forum because you are a dear friend to all of us. I do hope you will keep us posted on how you and your mom are doing. I also want to make sure you know about the cancer and leukemia forums here on med help as they may also be a source of support for you. Both of them have doctors in the patient forum so that may help you as well. I wish there was more I could do to help you. If there is anything you need help with, like research or anything at all I can accomplish long distance, please let me know. At least know that you and your family are in my thoughts and prayers.
We are here to support you in any way we can in this forum because you are a dear friend to all of us. I do hope you will keep us posted on how you and your mom are doing. I also want to make sure you know about the cancer and leukemia forums here on med help as they may also be a source of support for you. Both of them have doctors in the patient forum so that may help you as well. I wish there was more I could do to help you. If there is anything you need help with, like research or anything at all I can accomplish long distance, please let me know. At least know that you and your family are in my thoughts and prayers.
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