What's next?

[patti]

We finally were able to pin down what’s going on with mom after seeing the doctor today. The good news is she is not bleeding internally and her spleen is not eating her RBC’s. The bad news is her bone marrow is producing NOTHING. No platlets, no RBC’s, no whites. So, besides transfusions, what happens next? Can we continue to go a long time with transfusions like we have in the past? It seems like her tx’s last about two weeks. Also, her platelets are down to 6000. Still no petichaie but with her marrow producing nothing I expect that will become a problem. Any help would be appreciated.

Also, the doctor was able to shed some light on the high blood pressure and heart pain. She recommended mom take one lasix when that happens to help her body get rid of some fluid. It usually happens right after a tx which makes sense. We’re more comfortable doing it that way then lasix all the time.

Anything you guys can pass on info wise for the non-producing marrow would be appreciated. Thanks

patti

p.s. I forgot to add an important note – the doctor said she is close to recommending hospice but I feel like that’s premature considering mom’s body is still accepting transfusions. So maybe that’s my real question – why is she suggesting we’re getting close? Mom’s platelets are 6k but many have had them that low for long periods of time. Thanks

[lindajo]

Patti, I don’t know how to respond to a complete bone marrow failure and no production of cells. Everyone else seems to have it move to overproduction and complete takeover of bad cells in all lines.

While it may be possible for her marrow to kick in and start production again it sounds like your doctor doesn’t think that is likely. Generally hospice is recommended when a patient has less than one year to live.

So many patients have had more than 500 transfusions and stayed on transfusions for over 7 years that it depends on the patients’s age and other conditions or complications. You don’t say how old your mother in law is. It might be time for another opinion. How long has it been since you have had a second set of eyes look at the treatment protocal?

[DonUK]

Hi Patti, I think they key thing here is the lack of wbc’s. Red’s and platelets can be transfused but white’s aren’t generally. Without white cells the body will pick up all sorts of infection (most likely the patient infecting themselves with bacteria that they always carry).

That could be where the doc is coming from.

Take care
Don

[diner]

Patti,
I’m so upset to hear about your mom. I know you’ve helped her so much and been so involved with her care. I’ve often wondered the same thing about what happens if the bone marrow quits working. Don mentioned the WBC and I hadn’t thought of that since it’s not usually transfused.
I have had low platelets for over a year, around 3. I’ve gotten red cell transfusions every 2 weeks for several months, before that I got them monthly and before that it was only yearly. I hate this disease.

You know your mom better than anybody and every person’s body is so different. How does she feel about the news? I am praying something will help her. I have a sign over my desk that says “Never Give Up”.
Dee

[patti]

So you folks got my mind going about something. If mom’s bone marrow isn’t producing anything, why would she still take the neupogen? If the shots are supposed to help kick out white cells but her marrow isn’t producing any, that doesn’t make any sense. I think I need to make a quick call to the doctor and ask about the non-producing marrow. She said all cells are not producing. Is it possible she meant just reds and platelets????? I’m not sure how on earth they could determine that without a biopsy, but is that possible?

Linda, I did not know hospice was under a year. I thought it was weeks or just a few months. I think we would concede that mom probably has less than a year. But weeks or months we cannot give them. Thanks for that info.

In the meantime, I think I’m going to call the doctor and get a clarification on the marrow non-producing.

Dee, it feels like a lot of this slipped right by mom. She is really really really losing her short term memory and is not able to grasp just about anything the doctor is saying. I guess that’s an effect of long term anemia? She seemed to take note, but not really react so I’m honestly not sure she understood everything that was said and I didn’t feel like rehashing it for her just to discourage her. Who needs that? I keep trying to “protect” her and let me be the one who wigs out at new news. I guess I figure I’m younger and stronger…. Maybe that’s not such a good plan. I’ll chat with my husband about it.

Thanks for the input. It got my brain moving again.

Patti

[patti]

Linda,

Forgot to answer a couple of your questions. Mom is almost 76. We had a second opinion around January (maybe it was Dec.). Too many appts. to remember now, but that guy was a watcher and wait also. Nothing different from him other than his anger at our current doctor (not the NP we see) for his idiocy and lack of compassion.

Patti

[patti]

I just had a GOOD chat with mom’s NP. I have to thank you all for getting my brain cells moving. I was right about the cell lines. They believe that all three are not producing anything. Their alternative thought was that if the marrow is producing anything, they are bad cells, unusable by the body. I asked my neupogen question and she basically said I was right. It would be doing nothing if no whites are being produced. The NP we see consulted with two other doctors that she works under and got some interesting insights. Basically, both said they believed the neupogen was doing nothing but had wanted mom to keep taking it on the off chance it was doing anything at all since her ANC’s are so low. However, they felt like if she wanted to stop taking it, they wouldn’t strongly oppose it because clinically they don’t see it working. Although we do see her ANC’s jump around from 300-800. That is a question I will pose to mom and let her make the decision. She doesn’t want to take it and has just been waiting for anyone to say she could stop. They are also thinking of doing an echocardiogram because they believe the left side of her heart is enlarged and causing problems for her. Seems reasonable and is non-invasive. The doctor who oversees our NP will be cutting out his practice (he owns the place) and just managing so she found us another doctor at the clinic who totally believes in irradiation, etc. She said she watched the two doctors battle it out in the hallway about why blood should or shouldn’t be irradiated and the pro guy told him to “get over it, that will be the new protocol in the very near future for everyone that gets blood.” So that was a nice little piece of information.

Anyway, we are going to switch to this new guy who is much more in line with what we’re doing anyway but we’ll continue to see Bonnie as long as the insurance lets us. About every few months they require mom to actually see the doctor.

Thanks again for the help. I’m glad I made that call. And, I also now understand why Bonnie was talking about hospice. Not that I agree, but I at least understand.

Patti

[Suzanne]

I don’t know if this will help at all but my understanding was that when I progressed into AML and had a 75% blast level in my marrow that my marrow was just about ready to “shut down” and stop producing. The simple explanation as I remember it was that the marrow was getting packed with the immature white cells that were multiplying & not going to mature and were useless (the cancer cells). I had only a low level of blasts in my blood even when this high measurement was in my marrow. I always wondered if this was what was happening with patients that were unable to get anything in a bone marrow draw for a test.

[Suzanne]

By the way, has anyone ever considered Zarnestra for your Mom. It has been used in place of the strong chemo for older patients. Last I heard the success rates were about 30% or better. They tried for and were turned down for fast track approval(because there are so few alternatives for patientws over 60) They should be almost though the phase 3 studies by now. But again last I heard it was still available on a trial basis and they alsohad trials trying it in combination with some other drugs. The Dr heading the studies is at Hopkins so let me know if you want more info.

[patti]

Hi Suzanne,

The info you gave was very helpful for understanding. Although mom doesn’t have AML (at least they haven’t done a biopsy and she has no blasts in her peripheral blood), the shutting down thing makes sense. No one has talked about Zarnestra at all. I did some reading on it a long time ago and at that time they said they would only give it to people who had AML and had gone into remission and then relapsed. I looked into a couple of trials here locally but mom didn’t qualify for any of them because she hadn’t hit AML. I’ll run that past the new doc and see what he thinks. She’s pretty against any kind of chemo but if he really thinks it’s worthwhile, maybe she’d change her mind.

Mom did decide to go off of the neupogen. I guess we’ll find out if it was working or not if she shows up with an infection within the next few weeks. She kept 3 doses on hand just in case she needs to start it again – that was the doctor’s suggestion if she did decide to go off of it.

Thanks, Suzanne. Good info and I’ll check into it.

Patti

[Suzanne]

Patti, Zarnestra is a pill and has very few side effects. Your Dr. was referring to the trial I was in that used it after chemo and remission but I know they are using it in place of chemo for older patients and that FDA wanted them to do the phase three trials rather then approve it early for that purpose. It was not submitted for approval for use after remission. If you want to find out more you or your Dr should contact DR Judy Karp at Hopkins 410-502-5399 or the study nurse Jackie Greer jgreer6@jhmi.edu or 410-502-9690. I did not have any side effects until the very end of a whoile year of taking it-Then it was just a bit of my brain feeling a bit slow-“chemo brain” Good luck.

[patti]

Thanks, Suzanne!

[kristyk]

Hi Patti

although my mom did progress to AML and is doing low dose chemo (decitbine ) for persons over 60 trial, I know they are also doing same study with MDS at various centers. She hasn’t had many if any side effects thus far and she has been doing it for four months now. Her platelets fluctuate and she needs red blood tx every 2-3 weeks, but really doing quite well. Her last BMB in Jan was one of those they “couldn’t get much out of the marrow” ones…it was so packed..not good, and what they could get was white in color. She had one last week and the nurse performing it was thrilled because he got four nice viles of beautiful red blood out of the marrow and commented that she was “making blood again”. We won’t know blast count or results for a few more days but are taking this as good sign. So I guess my point is that it is possible that your mom could start producing again with a treatment that works for her. Perhaps this is not the end. I wish you all the best. Thoughts are with you

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