Mom was diagnosed yesterday

[Shelley Frady]

Long story but my mom has had some horrible experiences with rheumatoid arthritis. Very rare but it has caused her to go blind. She went in for a cornea transplant and preop her hemoglobin was 5.4. Surgery was cancelled, admitted and received 3 units of blood and a bone marrow aspiration.

They had told us it may be the RA attacking her red blood cells or a side effect from her RA meds so when this was the diagnosis it was pretty shocking. I am nurse and knew it was a possibility but wasn’t prepared for this diagnosis.

The genetic portion had not came back yet but according to the ococologist she is in the high risk category and due to her health issues she isn’t a candidate for bone marrow transplant.

She starts chemo (Vidaza) Tuesday.

Still in shock. I work second shift so had to work yesterday evening, cooking for Thanksgiving today. I have tried to squeeze in some research but it’s finally beginning to sink in.

Not sure what to expect really.

[Terry McDowell]

Hi Shelley. My husband was diagnosed in March, 2018. I must say that the more I research, the more confusing it becomes. I am starting to understand the blood counts. He has an appt. tomorrow with his specialist because some things have changed. At first diagnosis, I was very emotional and scared. As time has gone on, we have learned to take it one day at a time. I am writing to you because I recognize the shock and fear you are experiencing. Make sure you have a doctor that is associated with a Center of Excellence (they can be found on this website) and try to keep positive. My husband did very well with Vidaza and we will see what is now recommended. The one thing I have discovered is that no one seems to be similar to my husband and the way MDS has manifested. Reading message board sounds like there are many paths in this cancer. Who knows what paths your mom or my husband will take. They could be very good paths:)

[Shelley Frady]

Thank you for responding.

She saw the doctor and her first chemo today, port placement tomorrow then more chemo. She was very sick after we got home.

More results from the biopsy was back it is worse than what he initially thought. He moved her to very high risk and said median life expectancy is 9 months but he was shooting for 18 months with the chemo. Not easy to hear at all. I am assuming he meant 9 month even with Vidaza? Not certain though.
Heartbroken at the moment.

[anges]

Dear Shelley, very sorry to read about your mom. I’m in the same situation and I wish you strength in this difficult situation. Don’t give up hope, stay strong and I know that is hard sometimes. Are you also alert on her diet? I cook lots of vegetables and tea from papaya leafs for my mom everyday. I do believe it has some positive influence on her physical state but I also need to do this to keep myself kind of sane and prevent myself from falling into despair. The hard part is that actually no doctor can give you a reliable prognosis cause every case is different. Ofcourse that can be a positive thing also cause there are people who were given one year and after 6 years they were still alive. Unfortunately we don’t know that in advance but it’s just enough to keep a bit hope I guess.

[Pat Lawson]

Dear Shelley
My husband was diagnosed with high risk mds in October. He has had 3 opinions. All were the same diagnosis. They said if he did not receive treatment he would have 4 to 6 months to live. He is only 64 years old so no treatment was not an option for us. He decided to go into a clinical trial and we just got home from his first day of treatment. So far he is not having any side effects. We are hoping this will be the miracle we have been praying for. All we can do now is let go and let God. I pray for strength and comfort for all that are dealing with this disease.

[Terry McDowell]

I agree with Anges. We saw the doctor today and after listening I realized too that it is a spectrum and statistics are just statistics. It can be very stressful and heartbreaking but the doctors truly don’t know life expectancy. We were told a year last Feb., then told 5 years, and now told don’t know. Think the don’t know is most accurate. Only God knows any of our life expectancies. It is good to talk about your fears, and then concentrate on each day you have and how to make each one satisfying. Don’t give up hope or positive thoughts even though somedays it is hard. I just saw there are support groups under events. We are going to go to one of those. I think that will help: to be around people who actually understand.

[Shelley Frady]

Thank you everyone that has responded. I am going to research some more, all these results are all new to me. I just know if the Vidaza continues to make her sick she will consider stopping it. She has fought so long and been through so much just trying to save her vision and lost it anyway. She was so excited to be having the cornea transplant and because of her hemoglobin it was cancelled, then this. She has been through hell the past 4-5 years.

It was just her first treatment so hopefully they can premedicate her with something for nausea if it continues.

[Terry McDowell]

My husband did receive medicine for nausea, Shelley, so your mom should be able to get that. Good luck to her and I hope her next treatment is more successful. This is an emotional roller coaster and it does help to vent and express yourself. I am really trying to understand it, but I find it difficult. We go to a Center of Excellence. My husband is having more issues so yesterday we were told he has MDS/MPN unclassified but also look for clinical trials for myelofibrosis. So confusing. Makes you wonder if they know much of anything. We do try to take it one day at a time though. Would go crazy otherwise.

[Shelley Frady]

Thank you. Yesterday’s infusion went much better with no nausea. They premeditated her with zofran

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