Dear Daughter,
My mother had the same thing and died. They did not treat the fluid overload with Lasix or as it is known, also as furosemide. This medication removes excess fluids from the body. Excess fluids build up in the tissues of the kidneys, liver, lungs, heart and stomach (GI), and causes a lot of pain. This is treated with iv Lasix at 0.5/1mg/kg of weight. This would have saved my mother's life. But the doctors like to call the shots and determine when a little old person has had enough resources of goods wasted on them, so they don't need to live anymore.
My mother did not receive Lasix until the 16th day and after filling up with 77 pounds of iv fluids. Then they gave her too little. Tissue damage had already occurred. And when this happens, it is not reversible.
Go to another doctor. Go to her family doctor and get some Lasix on board with potassium also. She will live if she gets this treatment.
also, I wished we would have stopped the chemo the doc put her on. It was called levlimed or something. All her blood levels would get messed up when she took this mediation. I begged my mother not to take it but she had faith in the doctor. When a person takes chemo, the stomach cells that line the stomach on an older person stop functioning. This causes them to not be able to assimulate vitamin and take in vitamin B12 into the gut. Vitamin B12 makes the body produce healthy blood cells, but it cannot get into the system because of the destroyed stomach/gut cells from the chemo. Therefore, there is a lack of iron now in the system, and now low hemoglobin in the body, which transports oxygen. So, all my mother needed was vitamin b12 in the form of a shot, and her body would have made proper blood cells and received iron properly. Please do share this with the next oncologist.
I have found when doctors get frustrated, they give up on the patient and go on to the next. I am thankful for doctors, but they are not all good. Sorry, but that is the truth.
Don't give up.
Forums
Re: Treatment stopped due to fluid overload - what to do?
To the poster above, I am so sorry for loss of your mother! My husband was recently diagnosed with a rare type of acute leukemia. I have had my faith in doctors shaken so much in the past that it is hard to trust. I am looking online now because I forgot to ask a question earlier today.
To the original poster, almost all the doctors we have seen have been excellent (my husband's was in a teaching hospital for first five weeks of this year). When I have looked things up online, it seems they are doing exactly what needs to be done and have caught several things quickly.
I have gotten scared when my husband's oxygen rate was in low 80's so I can just imagine how terrifying all this must be. My husband has had several complications. I believe that his doctors and their quick actions saved him.
SO, YES, please get second and possibly third opinion! There are good doctors out there. If you have teaching cancer institute or hospital nearby, might want to consider trying that.
Best wishes to you and your family.
To the original poster, almost all the doctors we have seen have been excellent (my husband's was in a teaching hospital for first five weeks of this year). When I have looked things up online, it seems they are doing exactly what needs to be done and have caught several things quickly.
I have gotten scared when my husband's oxygen rate was in low 80's so I can just imagine how terrifying all this must be. My husband has had several complications. I believe that his doctors and their quick actions saved him.
SO, YES, please get second and possibly third opinion! There are good doctors out there. If you have teaching cancer institute or hospital nearby, might want to consider trying that.
Best wishes to you and your family.
-
smileeys
Re: Treatment stopped due to fluid overload - what to do?
My mother is going through the same thing. She is located in Beckley, West Virginia, was diagnosed with multiple myeloma in 2011. She has congestive heart failure that was diagnosed in October of 2015. We received word that her heart is functioning at 10%, so they are stopping chemo and will be sending her home from the hospital, with the expectation that she'll live three to six months.
However, I want to be sure that we have done all that we can do. How do we go about getting a second opinion in such a small city and state. Time is of the essence.
However, I want to be sure that we have done all that we can do. How do we go about getting a second opinion in such a small city and state. Time is of the essence.
Re: Treatment stopped due to fluid overload - what to do?
Probably the closest treatment center to your mother that has multiple myeloma specialists is the one at Ohio State in Columbus. They may have the sort of experience necessary to figure out a way to treat your mother despite the heart issues that she has.
I think, however, that the real problem in this case is not your mother's multiple myeloma, but her heart condition, which is limiting what can be done to treat her multiple myeloma. Your mother probably has been treated with Revlimid and may no longer be responding to it. She also may have had treatment with Velcade. So, under normal circumstances, something like Kyprolis would be considered, but Kyprolis probably is considered risky given your mother's heart condition.
One option that her doctors probably should consider is Darzalex, which was approved as a new myeloma treatment late last year. I don't recall it having any warnings related to possible heart-related side effects. However, it is an infusion, and the initial infusions take a lot of time, which might be challenging for your mother.
If her doctors have not explored the option of using Darzalex, it may be something to consider.
With both a heart issue and multiple myeloma, your mother really would benefit from being under the care of doctors who know a lot about both of those conditions, and have seen enough patients with both issues to have a sense about how to proceed. So I think that getting her to a major center like the one at Ohio State would be a good idea.
Good luck!
I think, however, that the real problem in this case is not your mother's multiple myeloma, but her heart condition, which is limiting what can be done to treat her multiple myeloma. Your mother probably has been treated with Revlimid and may no longer be responding to it. She also may have had treatment with Velcade. So, under normal circumstances, something like Kyprolis would be considered, but Kyprolis probably is considered risky given your mother's heart condition.
One option that her doctors probably should consider is Darzalex, which was approved as a new myeloma treatment late last year. I don't recall it having any warnings related to possible heart-related side effects. However, it is an infusion, and the initial infusions take a lot of time, which might be challenging for your mother.
If her doctors have not explored the option of using Darzalex, it may be something to consider.
With both a heart issue and multiple myeloma, your mother really would benefit from being under the care of doctors who know a lot about both of those conditions, and have seen enough patients with both issues to have a sense about how to proceed. So I think that getting her to a major center like the one at Ohio State would be a good idea.
Good luck!
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