New here and confused of course

[Cmall]

I am new here but have had to deal with other forums in the past. They are sanity savers in so many ways as I'm sure I will find out here. My 76 year old father in law was recently diagnosed with MDS. He comes from a small town in Missouri and was at a hospital there, then moved to a nursing home. We don't know for sure but it seems he waited a long time before seeing any doctors and that was an emergency trip to the hospital.

The hemo/onc there tells us that is you have one specific gene you can be treated for MDS but without the gene there is no treatment. Well of course my father in law does not have that gene therefore no treatment other than procrit and transfusions. In using my laymen knowledge reading the pathology report I'm just not convinced it is MDS or maybe just MDS alone and certainly don't know what type he has nor what stage. The doc has been asked but we aren't getting straight answers although this doctor has taken the time to return phone calls and explained some things. Oops I'm starting to babble here.

As I said he is in a nursing home now for physical therapy to try and strengthen him though they don't seem to give much hope that he will ever go home. Today my husband received a call from the nursing home saying that his hemoglobin had dropped to 7.7 and they want to send him over to the hospital for a transfusion. My husband says fine but they have to ask his dad............although we knew there was a chance he would refuse. He did. I guess my main questions at this point are we crazy for not trying to get more info and maybe have the pathology slide sent elsewhere? He was a healthy man except for this and high blood pressure. The other question is what will happen most likely since he refused the transfusion besides us knowing he will get weaker. Will his counts keep dropping? Also his white count was 11 point something. They told us he wasn't producing white blood cells so how can that elevate?

Any info would be greatly appreciated and I will search more in the other posts to this site and see what I can find out.

Thanks and my best to all of you.
Cheryl

[towncarlady]

You seem to feel helpless! Doing nothing is so frustrating! Check to see if a family member has power of attorney or a living will for your father-in law. Ultimately, I suppose you have to respect his wishes.
You certainly at least can request a second opinion.

Blessings from a lady who grew up in Arkansas!

MDS..Jan 2008

[LynnI]

I am not sure what the hem/onc was stating about a gene, but I am going to assume he is talking about the 5q-. Many of us don't have that chromosome problem and yet we are recieving treatment.

I would strongly suggest that you get a referral to a MDS Center of Excellence (they are listed here and at the MDS Foundation).

Good luck.

[Neil Cuadra]

Cheryl,

Do you think your father-in-law is competent to understand what's wrong with him from the explanations his doctor, you, and your husband give him? Do you think he's making rational decisions consistent with his personality from before he was diagnosed? Or is he acting differently from his old self?

If he knows what he's doing and wants to call the shots, respecting his decision may be a hard choice but the right choice. But if he's been incorrectly told that it's hopeless and has given up, you and your husband could let him know what's going on and what you and your husband think makes sense, e.g., transfusions so he'll feel better and be safer or getting a second opinion if you can arrange it.

If you want more information yourself, without having to rely on his doctor, contact the Aplastic Anemia & MDS International Foundation and get their free MDS booklet. You can also download Understanding MDS: A Patient Handbook from the MDS Foundation (220K PDF).

[Cmall]

arghhh I meant my father in law was missing a chromosome that he needs to be able to get treatment. Seems my brain is fried. lol Thank you all for your responses. My father in law seems competent and it is most likely in his character to refuse the transfusions. My concern is his diagnosis right and have to find a way to get a second opinion to know that for sure.

Does anyone have any idea what will happen now if he keeps refusing the transfusions? Obviously he can't live without them can he? Can he live months? Sounds selfish maybe but he is 8 1/2 hours away from us and my husband has already had to make 3 emergency type trips down there. I he will live months we want to try somehow to get him to come up here by us so we can watch his care and see him. If we are talking weeks then I wonder if it is worth it.

Guess we will see what the new news is today. Once again thanks to all that give so much knowledge and comfort to others in the same boat so to speak. These forums never cease to amaze me.

Take care
cheryl

[Birgitta-A]

Hi Cheryl,
Before we get any treatment our doctors should look at EPO that is produced in the kidneys. EPO stimulates the bone marrow so that we get more red blood cells. If EPO is less than 500 the patients should try EPO injections for example Aranesp.

My EPO was more than 800 so I never got Aranesp or similar drugs. My HGB was 70 at dx May 2006 and I was transfusion dependent from dx. I have now received 110 units of packed red blood cells without any other complication than too much iron that is treated with other drugs (Desferal and Exjade).

It is natural that your father refuses treatment initially but you should tell him that there are many patients with this disease that live for many years with high quality of life with supportive therapy and perhaps chemo like Vidaza.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload and Neupogen 2 injections/week for low white blood cells. asymptomatic