Mom has been on many drugs~oral Vidaza etc.

[LilyR]

My mom was diagnosed with MDS over two years ago, but I think she had this disease for many years. She just wouldn't see a doctor. She is 79 and extremely closed about the details of the disease and what she is going through. This is what I know.
-When she was diagnosed her hemoglobin was 6. Her blast count was 7 and only the RBC were effected. I don't know if she was categorized as low-risk or intermediate risk.
-She was immediately put on a study with oral Vidaza. She never was completely transfusion-free on this drug, but she stayed on it for over a year and transfusions were infrequent for a time, but she never achieved remission.
-She was taken off of Vidaza and put on Rivlimid about a year ago. I don't think she is del 5q. This drug caused her WBC and platelets to tank and she was taken off of it.
-She was then put on Estybon some months ago which cause urinary frequency so the dose was reduced.
-She was recently put on Growth factor, and, I think, she is also still on a Estybon, but I'm not positive.
-She has transfusions somewhat regularly, but I don't know if it is once a month or every other week since Dad takes her for these without telling anyone. (He would love to tell us what he knows, but he is in a position where he can't.)
-She has had a number of bladder infections.
-She doesn't seem to have any energy. She has essentially dropped out of life and would prefer that her kids don't come over. She said initially that her doctor said this disease won't shorten her life at all, but I don't know if she still believes that.
My siblings and I would love to bless her and walk this journey with her, but that doesn't seem to be an option. We would like some insight and opinion from others who have experience with the process of this disease as to where we might be at this stage and what to expect from here since she won't let us talk to her doctor?

[Neil Cuadra]

Lily,

You are in a tough spot because your mom rejects family help. She may think she is "sparing the children" while actually making it harder for you and your siblings. Since she wouldn't see a doctor for so long, it's a sign that she's had a hard time facing this challenge, much less sharing her feelings about it. It's a fact of life that some people close their eyes when they know they are sick, as if not talking about it will make it go away. From what you say, she may have given up hope of getting better while not appreciating the family she has, the support she could get, and the chances that she'll be able to keep MDS at bay for some time to come. It's never clear whether a child should honor a parent's wishes to stay uninvolved or if adult children "know better" and should insist on helping.

Although you could try to make clear to your mom that you'd feel much better if you could stay informed and help her with health issues, you can only push so hard. You know your mother best. I think you are wise not to press your dad (or the doctor) for information that's not "authorized".

How did you manage to put together so many facts about your mother's recent treatments when she and the doctors aren't keeping you informed?

It's likely that her MDS was categorized as intermediate (not low) risk since she was put on Vidaza so quickly. Although it may seem that the doctors are treating her by trial and error (switching meds when side effects occur), that's actually common with MDS, because there's usually little evidence in advance about what treatments will be most effective, and the interactions with other health conditions, especially at age 79, can leave doctors with only less-than-ideal choices. The answer about what's likely to happen next, medically, is that the doctors probably don't know. That's part of what's frightening about this awful disease; it can be stable or get worse without much warning.

There's a bit of good news among all this: that your mom has lived with her MDS for a couple of years so far. Despite her need for transfusions, her MDS might stay as it is. Iron buildup from transfusions can become an issue, but that can be treated too. It's also good news that she is apparently willing to follow her doctor's treatment recommendations. Patients who give up completely aren't as likely to be cooperative with their doctors.

I should mention that if you think your mom is depressed in the clinical sense, there are professionals who can help, if she'll accept the help. You can also seek out professionals at the hospital or elsewhere who can help you and other family members cope.

Are you able to visit with your parents and talk about other, more positive, news, without mentioning the MDS-elephant in the room? There are probably plenty of family topics other than health to talk about, such as what everyone is doing recently (especially if they have grandkids). Many adult children are able to brighten up their parents' day by bringing over photo albums and getting everyone talking and reminiscing. At 79, your mom has lots to look back on, and perhaps you could make some simple plans for her 80th birthday as a way of looking ahead.

I know this doesn't solve your problem but please know that I understand the tough spot you are in, and that other families have had the same issues with both the medical and psychological sides of a serious illness.

[LilyR]

My siblings and I have put most of this information together from bits and pieces that my dad has said and lots of research to make sense of his clues. I think he really wants us to know and he is in a very hard position. I have been so concerned knowing that the drugs have not stopped her need for transfusions. I read one study that indicated that low to intermediate risk patients who fail Vidaza have a median life expectancy of 17 months. That is hard for me to process as a possibility since we haven't begun to work this through as a family. I'm encouraged to hear from you that there is a chance that she can keep going for some time. I know that each person is so unique with this disease and having no access to her doctor leaves her family fearing the worst. As far as conversations with her, she will talk about anything "safe," but it's emotionally draining.
I appreciate your wisdom in encouraging me to talk with her about what she will talk about. I admit staying away more lately, just to avoid the stress. That isn't probably helpful and will lead to much guilt in the long run. She may be depressed, but she would never seek help for it. It is fortunate that she is cooperating with her doctor's treatment regiment. I think I mentioned, though, that she does seem to believe the doctor can fix this.