Grandma with possible MDS?

[RDC1001]

Hello,

I have read through lots of threads and I have found some very helpful information, but I still wanted to share.

My grandmother is 92 years old and her hematologist is "leaning" towards an MDS diagnosis.

A quick backstory:

She has been in overall well health and I help with her care though I do not live with her. My father works full time and I split my time there with my cousin. A few weeks ago I was watching her as she had lost some of her appetite, had lost a little bit of weight, and just generally looked unwell. She also started getting a case of gout. We went to her regular doctor and they suggested we go to the ER with her high temp (102) and severe pain...they wanted to make sure it was not a joint infection.

It ended up being a UTI, which I thought cause her recent decline in memory. But through that admission to the hospital, her labs came back and her hemoglobin was at a 6. They were worried about possibly bleeding in her colon for some reason. Her hemoglobin came up to above an 8 and they transferred her to sub-acute rehab, where she remained until yesterday.

Every other day I asked the labs to be drawn and her numbers went down, hemoglobin, hemocrit, etc (mind you, I am not a medical person so I have no idea what it all means), but no one seemed to be concerned about it in rehab or worried...but something did not seem right.

Because of this, I scheduled an appt with a hematologist she saw a few years ago. He was able to get us in right away actually. He took new labs, and based on those labs, he suggested that it is possibly MDS (and only slightly mentioned Leukemia). The only way to know is to do a bone marrow biopsy. While he was very kind, he suggested that MDS is related to aging and did not make it seem like a big deal.

Once I got home and started researching a little, I am realizing that it is VERY much a big deal. I need to discuss the options with my family--do we want to put her through a painful biopsy to be sure this is the diagnosis. And if this is the diagnosis, the stories I have read for elderly and advanced do not seem to have a great outlook.

I know no one can give me advice about what I should do, but if you have dealt with this yourself or cared for people with MDS, how realistic do you think I should be in regards to her treatment? Prior to this, her health was great for her age. In the past month she has had a rapid cognitive decline....I cannot believe how her short term memory is just nearly gone all of a sudden. But she is able to walk to the bathroom, cook small meals for herself, and such.

**Oh, a side note. On one of her discharge papers there was a diagnosis of chronic kidney damage (stage 3) and no one mentioned a word to me about this, which I find odd.

My grandmother is like my mother, I want to do all I can for her. Does anyone have any advice?

[Neil Cuadra]

RDC1001,

I'm sorry that your grandmother is having these health problems. Good for you being so proactive in helping her, and seeking more information. In consultation with the doctors and in talks with your family, you'll first want to understand your grandmother's symptoms and their severity, then consider the possible causes, and then the choices of treatment (or in some cases non-treatment).

It seems odd to me that a hematologist would suggest that she has MDS but that it's not important. As you've read, MDS can be very serious and life-threatening. It's correct that diagnosis usually depends on the results of a bone marrow biopsy. But let's hope that the hematologist's lack of concern was warranted, and simply needs to be explained to you.

They call the standard blood test a CBC (complete blood count) test. Your grandmother's CBC results from when she had an infection don't represent her "steady-state" blood counts. Do you have CBC results from after the infection cleared up? If not, I suggest getting the numbers from a pair of subsequent CBCs, and noting which counts are low, by how much, and whether the results are pretty much the same from one test to another. That's the starting point for knowing how serious the hematological problem is.

WebMD has good explanations of the various blood measures, so I suggest reading the details there. This will help you know more specifically what to ask the hematologist.

Suppose your grandmother is confirmed to have low blood counts for unexplained reasons. Would testing for MDS, with a bone marrow biopsy, tell the doctors anything they need to know? That's an important question to ask. Even if it's MDS, she's an unlikely candidate for aggressive treatment due to her age and other medical conditions. Low blood counts are a symptom of disease, but even without a confirmed diagnosis they can treat these symptoms with transfusions or drugs that can boost particular blood counts. For that reason, I wouldn't suggest asking for a bone marrow biopsy unless you first confirm that her situation is serious enough to need treatment, and then only if the hematologist tell you that the choice of treatment would depend on the bone marrow biopsy results.

If, despite her memory problems, your grandmother is capable of understanding what you're learning and helping make decisions about her care, you should help her understand her symptoms, diagnosis, prognosis as best you can tell, and let her opinions guide your approach.

[RDC1001]

Thank you for your reply. I appreciate it.

When I had time to think it over, it wasn't that he didn't seem it was important...it just seemed that perhaps because she is 92 there would not be an aggressive treatments. I don't know...

What I do know is something is going downhill, and we are simply trying to figure out what exactly, as to help with her care. She has had numerous labs done since July, the latest being with her primary care doctor and her hemoglobin was under a 7, and they ended up giving her another blood transfusion. Her last was only a month ago.

Today, while helping her shower, I noticed a lot of petechaie (plural) all over her body that was not there before. Her appetite has diminished even after her transfusion. We have an appointment with a new geriatric doctor on Wednesday. I am looking for some guidance at this point...I don't necessarily need a "diagnosis", but I want to be able to help her no matter what the outcome. I feel that without some official diagnosis, we are just doing what we can...but I don't know if that is the right thing.

I will talk to the hematologist after her geriatric appointment as well, and perhaps he can offer some counseling as well. I just want to be able to provide her with the care she needs to be comfortable...

[Neil Cuadra]

RDC1001,

I understand your goal, and it makes perfect sense. Please let us know what the geriatrician and hematologist say.

Good luck.

[RDC1001]

I hope a few more people see this, especially if they have dealt with anything similar.

My grandma had her geriatric appt last week and it was a long, good appointment. Basically we discussed the "unofficial" diagnosis of MDS and reasoning for not doing a bone marrow biopsy. The doctor agreed because at this point in time, any MDS diagnosis isn't really going to change her care. She isn't doing chemo, etc.

She talked to my grandma specifically about what tests she would still want to do and my grandma said none. She said she would go to her regular appointments and get transfusions as needed, but no invasive procedures. She said, "I've lived a good long life."

As hard as it is, I understand where she is coming from. I've been dragging her from appt to appt and she is just plain wore out. So I took her to lunch, we have a very good talk, and I took her home.

Between last Wednesday and Sunday, her appetite went down even more, enough that my dad too her to the ER. Her hemoglobin was 7.5, but they ordered two units for her...perhaps because she has been dropping so low lately? They brought her up to a 10...that is high for her and I will take her back for labs on Friday to see what the difference is.

When I saw her today she does not look well, especially after having a transfusion. She has no appetite still and very tired. She is no longer allowing the visiting PT and OT to come, but just the nurse to take her vitals, and that is me convincing her.

I feel she has went downhill more even since last week. But I have looked for "end stages" (i hate that) and I haven't found a whole lot online. I just want to be prepared. I don't want to be the jerk that brings up hospice if we aren't there yet...but I just don't know.

Does anyone have any advice regarding this? Her first transfusion lasted a month, the second one two weeks...

I hope this makes sense.

Thanks for everyones help.

[Hopeful]

Hi RDC1001,

I am very sorry to hear about your Grandmother.

Given what you have described, I would encourage you to discuss hospice case with her doctor. He would not provide the orders unless he thought she may have 6 months or less to live.

Hospice will give you a team of people that are dedicated to the care and comfort of your grandmother. She will likely have a nurse that comes to her home to check her vitals, and you will also have access to social workers and volunteers to just visit with her when you are unable to. Your grandmother can stay in hospice longer than 6 months. When I volunteered with hospice, we had some patients that were with us for two+ years! Some hospice programs will allow transfusions. So transfusions, dialysis, and IVN would be important things to discuss with her doctor while discussing this topic.

Hospice carries such a stigma that most people only use it for the last week of life! However, this is not what it was designed for. In the right situation, where everyone is accepting of the transition, it can be a beautiful thing for all involved.

Best of luck with whatever you decide.

[Maura R]

Hi RCD1001,

So so sorry to hear about your grandmother. I am also in the same boat. My mom was diagnosed 2 months ago at 81 years old. I actually started tearing up reading your post, as my mom said the same thing..."I've lived a good life". She also has chosen to just do the transfusions. She started out once a month, and is now getting it every other week...coming quicker than we thought

As for Hospice, we contacted them and they will not come in until we stop the transfusions. As soon as we stop they will come in, doesn't have to be at the end, as most people think. Ask your grandmother's doctor to contact them for you.

Wishing you and your family the best and saying prayers for you all!!!
Maura