Mother in Law has Bone Marrow Failure

[Sara from CA]

Hi Everyone,

I'm brand new to this forum, and just looking for some answers or guidance from others. My mother-in-law, who is now 78 years old, was diagnosed 4 years ago with MALT lymphona (a non-aggressive type of non-hodgkins lyphoma). It is now stage iv, with cancer in all lymph nodes, and just today, we received the results from her bone marrow biopsy and 95% of her marrow is full of MALT cancer.

She has been in and out of the hospital for 3 months, and 3 times just since the beginning of November. She is on her 4th or 5th blood transfusion in just the past month. Her hemoglobin hovers around 7-8, increasing slightly with transfusions and then dropping again. She is confined to a wheel chair, incontinent, very confused and loss of short-term memory. Having to be on oxygen almost continually the last week. 90% the last few days, but drops to 70% when she tries to move. Her spleen (which was enlarged 10x normal) was removed about a month ago. She had severe swelling in her legs and ankles, but after being consistent about elevating them daily, the fluid moved into her chest cavity and had to be removed surgically (3 cups).

We can't seem to get a straight answer from the doctors, which I guess I understand, but would love to get some thoughts from others here. With Bone Marrow Failure, what can we expect as far as a prognosis, assuming we don't do any other treatments (ie no chemo or radiation) and just continue transfusions I guess to keep her comfortable. How much time does she have? What was your experience with a loved one in such a terminal condition?

[Neil Cuadra]

Sara,

I'm very sorry to here about your mother-in-law's multiple health conditions, and sorry that your family has to deal with so many unknowns and face the end of her life.

At least for now, blood transfusions at this pace (about weekly) wouldn't concern me. Transfusions can help her by supplying the oxygen she needs in her circulatory system, help her breathing, lessen fatigue, avoid headaches, and perhaps even help her ability to think and understand.

You don't want her to get more supportive transfusions than necessary, but the risk is low if they are infrequent and not over a prolonged period (which of course depends on whether the doctors think she has months left or years left). Asking the doctors to request "fresh" blood from the blood bank (recently donated, as opposed to near expiration) might increase the length of time between her transfusions.

If she gets regular transfusions for months, her blood may start to build up too much iron, which can harm organs if not removed by a process called chelation. You'd like to avoid that additional complication. You can read about it at the AAMDSIF website.

The bottom line is that dealing with multiple health problems is a balancing act between treatments that may interact, and which each carry risks. But overall, transfusions may help both her quality of life and the length of her life.

I'm a caregiver, not a doctor, but I hope that I've given you information that will help you in your family's discussions with her doctors.

[Callie]

First, let me express, also, how sorry I am your Mother-in-Law, as well as, your family are dealing with all of this! Everyone here is wonderful and ready to provide any assistance and help that we can. Both my Dad (Bailie on here) and I received so much information over the last four years. If you have any questions that I may provide answers to (Dad was diagnosed almost four years ago, did very well for most of that time, but very sadly passed away this last July as a result of AML relapse - still so hard to believe and accept), please do not hesitate to ask (feel free to PM me). I wish you all the very best. I feel for (and cry with) anyone having to go through this.