Confused and frustrated

[Barb]

So the plan for today was that the hospital would call me when a bed came available today and I would be admitted for 7+3 induction chemo. My mom and step dad drove in to Columbus to be ready to take me to the hospital. Finally a call came from the Dr. The call just wasn't what we expected.

Genetic testing to look for specific mutations, which was expected by today, had not yet returned. Therefore they do not know how to fine tune the chemo. They are now saying it could be Thursday before the results are in. It is emotionally draining to keep hearing this is urgent and we need to get your chemo started quickly to wait.

I had taken FMLA, and disability from work. I was packed and ready to be admitted. I had family drive in to take me to the hospital. And now I am sitting at home.

I go in to get labs Monday. If the testing is back I'll be admitted then. If not then it looks like a Thursday admission.

Has anyone else experienced something like this with an AML diagnosis?

[lisa3112]

Yes, unfortunately. My BMT was actually sped up because all my counts dropped unexpectedly. I rocked up to hospital (I was living 2hrs away) to get a routine Bone marrow biopsy (on a break after chemo) and I had to stay in hospital right up until the transplant (getting 2nd daily blood transfusions). I guess what I'm saying is your treatment will chop and change depending on your results. It sucks that you got delayed, but at least they are trying to give you the perfect chemo combination. Hang in there!

[Barb]

Thanks Lisa. It is good they want the right chemo.I do wish they would have told me there was a possibilty admission would change because they were waiting for these results. I am adjusting now, but initially it really threw me. I just wish my parents had not driven all the way in to Columbus before the hospital finally called.

[Naive]

My experience with Docs and hospitals is a bit like the Army....hurry up and wait. It’s awful when you lose control over everything. I hope all goes smoothly next time.

[MDS2018]

has anyone heard of revlimid and what the side effects are and did it help anyone.
since giving my wife this drug her RBC went down from 3.1 to 2.4 also how low can your blood count go.
how do you all manage the pain of it, you all are WORRIERS to deal with this MDS I never heard of this ever until the Dr. told us what she had.

Im lost all i read is that I am going to lose her without a stem cell transplant her cancer Dr. says the drugs may put her MDS in remission but we have time.

should she already at least be going to stanford university MDS center to talk to a stem cell replacement expert and get the ball rolling now.

Im so affraid but stand strong in front of my wife but inside im crushed thinking of not having her anymore is killing me, what do i do who do talk to. im so lost in all this im dizzy.

[Barb]

MDS 2018,

Take a deep breath, and gather facts. Knowledge is power. And your wife needs you to be strong for her. I know it is hard, but you do have time, likely more than you realize.

So first a few facts that may help put you more at ease. From your signature it seems your wife may have 5q- syndrome. If one is going to have MDS, it is the best kind to have. It has a low likelihood of transforming to an acute leukemia. It can happen-I am living proof of that. But even for me, it took 12 years. For 12 years I was very stable with no problems. I did a little erothropoitin in the beginning, but most of the time I was on watch and wait. When I was first diagnosed with MDS 5q- sydrome, I was 46. My doctor told me she had another patient who was also in her 40's at diagnosis and who at the time was in her 70's and doing great. She was on Revlimid for a while which put her into remission. Generally speaking, with 5q- anemia is the biggest symptom. It does not warrant a transplant because it is considered low risk for transformation.

Secondly, Revlimid is a form of oral chemo. It will cause all 3 blood lines to drop. There is a protocol doctors follow. Most will drop the dose back, then raise it back up to get a patient into remission while minimizing side effects. There was a doctor at the Cleveland Clinic who would keep the same dose and treat the symptoms of dropping counts with transfusions, etc. So it is normal for her blood counts to drop in the beginning. They will come back up and stabelize. Revlimid is known to be highly effective in 5q-.

I remember how confusing it all was in the beginning, and scary. Then I actually got used to it. It really did not impact my life for years other than seeing the hematologist twice a year for labs.

This is a great place to ask questions and get support. I hope my answers are helpful. You do have time. And she is likely to never transform to an acute leukemia. Don't rush the process. Revlimid is a great drug.

Blessings,
Barb

[MDS2018]

Hey Barb thanks for the info it did help, i feel better about outcome. I have read that del5q is the most responsive to Revlimid as well.
your info is encouraging to me thanks and I will update as this moves forward.

Thanks and ALL YOU MDS PATIENTS ARE WARRIORS.....

[maggiemag]

Hi Terry. I also have MDS 5q-, for about 8 years or so; lost track. I am relatively stable right now. I had never heard of it either when diagnosed, and I'm a retired RN. I agree with what Barb said. When on Rev. my counts would all go down for a while and then come back up. Initially I had a mild rash which is common I think, but fades. I met a woman at a conference who had been on it for about 10 years if I remember correctly. Her Hb was still over 11!

It is sometimes suggested that patients be seen at a MDS Center of Excellence as not all heme/oncs are that familiar with it. I'm sure there are several centers in California. Your wife might feel better and less anxious if seen at one, or it could increase her anxiety. Your call.

Read all you can on the AAMDSIF site. They sponsor many webinars; some are very basic info and some more technical. The more you understand the easier it is to cope, I think.

Keep us posted, and don't hesitate to ask questions!

Mags

[Rarity]

Hi MDS2018,

I am sorry of your wife's diagnosis. Like you, I am the spouse and we go through something different than they do. It is frightening to learn of MDS. Learn more about MDS on reputable sights (AAMDS) I have found it beneficial to learn more about it. I know for me it has helped tremendously as well as this forum.

Wishing your wife and you all the best.

[MDS2018]

maggiemag,

thanks for responding you are very encouraging for me and my wife because we thought that prognosis was not good, but you are proof that we do have hope, and your post will help me be strong for sure.

I am going to take my wife to the MDS unit at Stanford University, Ca.
I want to at least get foot in door if a stem cell replacement is necessary.

Thanks again for your insight, I hope all goes well for you too.

you are a MDS warrior for sure. I am going to spread the word so people know what MDS is because I dont think enough attention is given to MDS.

Thanks

[MDS2018]

thanks for your comment, and yes MDS effects everyone in the family.

I am getting as much info as i can about MDS and yes it is helping me, I gives me the info i need to better get help and care for my wife.

hope all is good with your spouse. can I ask what type of MDS your spouse has.

[MDS2018]

Hey Barb,

Can I ask you did your red blood cell count get lower than 2.4
that is where my wifes count was at going into the 3rd week of revlimid 1st treatment. Dr said if its same this coming tuesday he will give her another procriet shot to help raise rbc.

I am just wondering if her RBC is normal for MDS del5q. on revlimid

thanks

[Barb]

MDS2018,

I didn't pay as much attention to RBC as I did to hemoglobin-just another way of measuring the same thing really. Both look at red blood cells. The lowest I went with hgb was 8, until the AML. That is rather unusual though. I had a really easy way of it with MDS.

Even now, although I have what's considered "the worst type of Leukemia with the poorest prognosis," I am really doing well. My hemo transfuses me whenever my hgb goes below 8. I stay home when my ANC goes below 500. And I've only needed platelets once, and then only because I was a little low for my port surgery.

It really varies from person to person. Some people start the 5q- MDS journey needing several transfusions then Revlimed stabilizes them. Others like me go years not needing anything. I never had the need to go on Revlimed. I'm doing decitabine now in preparation for a transplant.

I don't believe your wife's counts are unusual. What about those of you who have done Revlimed, how low did your RBC or hgb go while on Revlimed?

Blessings,
Barb