The Journey Ahead

[David M]

Thanks Cheryl C for the update! You know, sometimes "no change" is a good thing.

I am also curious about KatailS... her symptoms were in some ways very similar to mine, and I haven't seen an update from her in a while. KatailS, how are you???

[KatailS]

Hi David!
Good to hear from you and to hear that you are fairly stable.... tho sorry to hear about the flu doubleheader. I am doing much the same. My numbers remain below ‘normal’, but pretty stable. I have my bloodwork every 3-4 months and get to visit with my hematologist. My next bloodwork is coming up in April.
My official label is moderate idiopathic aplastic anemia with a small PNH clone. I do have very short telomeres as well, but no genetic predisposition to my diagnosis. Been up to Dana Farber a couple times and am comfortable with the doctors there if I ever need them. No treatment, just a watch and wait. I am living my life and staying as healthy as I can by eating right and exercising. So, just like you.... same is good 😊
Keep in touch.... and keep living life to the fullest!
Kathie

[David M]

KatailS,

Good to hear you are remaining stable! Sounds like you are making the best of it, and I intend to do the same! My next blood check is in April too... so, we'll see.

I do need to get back to doing some type of regular exercise though... Good to hear from you!

David M

[KatailS]

Originally Posted by David M

KatailS,

Good to hear you are remaining stable! Sounds like you are making the best of it, and I intend to do the same! My next blood check is in April too... so, we'll see.

I do need to get back to doing some type of regular exercise though... Good to hear from you!

David M

Well the journey continues..... just got my latest bloodwork results and was thrilled to see my WBC finally tip into the ‘normal’ range for the first time in a few years. RBC remains below normal, but not bad (3.67). My MCV is still quite large (109.5) so even tho I have fewer red cells, they are getting the job done. My platelets are up to 122,000.... highest they have been in more than 4 years. I was very encouraged.... until I got the results of my PNH test. My monocytes clone has gone from .11 to 6.88 in the past year. Needless to say I am nervous and a bit deflated. Seeing my hematologist in a couple weeks.
Overall feeling okay.... suffering from major hot flashes (boy oh boy are they awful!) and even with the higher platelets I still find surprise bruises.
Hoping to hear a good update from David soon!
Kathie

[David M]

I am thankful that your counts are somewhat improved! That is always reason to celebrate! I know you are concerned about you PNH test results. It will be interesting to see what your Dr. says... waiting is one of the hardest things!

It is a little too early for my "yearly" report, but I did go to my local hematologist yesterday for a 6 month visit. Overall, counts were about the same. Oddly, my creatinine levels (which have always been on the upper limit) were above the upper limit some. Got to drink more water and reduce coffee (i.e. caffeine) intake... arrrgggggh. Other than that, pretty much the same. No new symptoms to report either! Could be better... but could be much, much worse. (So I am thankful!)

As you say, the journey continues... Keep us posted!!!

[KatailS]

After my April test results my hematologist was quite concerned because my PNH clone (monocyte) jumped from 0.11% to 6.88% in one year and was interpreted as being “consistent with PNH”. I have CBC every 3 months and the PNH test every year. She wanted me to have all bloodwork including the flow cytometry repeated in 3 months. I just had my recheck appointment today and the results were as follows (April results to July results):
RBC 3.67 to 3.25
WBC 4.7 to 2.8
Hemoglobin 13.0 to 11.5
Hematocrit 40.2 to 34.4
Neutrophils 2.9 to 1.263
Platelets 122 to 117
MCV 109.5 to 105.8
PNH clone (monocytes) 6.88% to 0.08%

So I guess the PNH was perhaps a false alarm? Can the PNH clone fluctuate like that?
My hematologist is no longer concerned and says the numbers are ‘good’ enough to graduate to not needing bloodwork for another 6 months. I am being labeled as “stable”. I guess in the big scheme of things I am very grateful.... but I am also very surprised. Time to exhale
Best to all~
Kathie

[Hopeful]

Hi Kathie,

I am glad to read that your high PNH reading may have been from a erroneous lab test and that you are staying stable.

Are your monocytes lower now as well? The high MCV is still concerning to me. 6 months is a long time to wait to confirm that things are indeed trending stable or up.

If it were me, I'd would want to recheck my CBC in 3 months. The test is cheap (relatively), and seeing stable or rising counts would be affirming.

Please don't take this as being discouraging. I am just saying what I would do!

I hope you continue to do well!

[KatailS]

Originally Posted by Hopeful

Hi Kathie,

I am glad to read that your high PNH reading may have been from a erroneous lab test and that you are staying stable.

Are your monocytes lower now as well? The high MCV is still concerning to me. 6 months is a long time to wait to confirm that things are indeed trending stable or up.

If it were me, I'd would want to recheck my CBC in 3 months. The test is cheap (relatively), and seeing stable or rising counts would be affirming.

Please don't take this as being discouraging. I am just saying what I would do!

I hope you continue to do well!

Hi Hopeful
I honestly don’t know what to think.... the doctor never said she felt the last test was erroneous. I asked if the PNH clone could rise and fall like that and the doctor felt as if it could. So that is that. To say I am comfortable with the doctor’s opinion to wait 6 months would be a lie.... but she is the one calling the shots. I will say that if I feel at all ‘off’ during the six months I will call my regular doctor and ask for a CBC. Going to stay positive about it and go about my life. I am blessed to have the numbers I have and won’t let myself worry about it. If my friends, family and hematologist aren’t concerned then I will try not to be.
Thanks so much for your kind thoughts.... wishing you well

[David M]

Kathie,

One thing you might suggest to your doctor... if you really would like to be checked more frequently than every 6 months...

This happened to me once, and I think it worked out well. My hematologist at one point said I was "stable enough" and only needed to come in to see him and get a CBC every 6 months. I told him I felt uncomfortable with that, and felt like I needed to have CBCs done a bit more often.

So, as a sort of compromise, he scheduled me for quarterly CBCs -- but I would only have doctor visits every 6 months. The other 2 CBCs were lab-only visits. I think this kept us both happy.

Just an idea...

David M

[Naive]

I’ve now see my haematologist every 3 months but have monthly blood tests which I find reassuring. I think I’d be a bit concerned only having a blood test every three to six months. I personally know someone (with MDS not PNH) who went from low risk to AML in a 3 month period and then passed away. Things can change rapidly.

[Cheryl C]

I only see my haematologist every 4-6 months but he gives me a path form to cover 6 tests and I can choose when I have them. Mostly I have them monthly but I don't stress if I go a couple of months. I find it helpful/reassuring to record the key results in a spreadsheet and chart them so I know how I'm trending.

All the best .... Cheryl