Hmm... Myelodysplastic syndrome??

[westof]

Had a phone conference with my MO today. And...

I've been on lupron for 2 years and Zytiga and pred since 4/19.

My WBC went from an average of 4.2 to 3.7 within my monthly blood draw.

Since I started Z, my PSA has been 0.014 and T <12 and no mets. DX 2 years ago.

Too few se's to mention (about to turn 72 and feel great) and now the possibility of MDS?

He mentioned this and wants to put my blood under the microscope for further analysis.

Any thoughts?

And I thought that I was "out of the woods". Hmm...

Thanks

[treedown]

If you have MDS I have had it since radiation in Feb 2020. I have had low WBC ever since. I stopped Zytiga for about a month and they started to recover so they started me back at a lower dose. They still have not fully recovered but my doc does not seem concerned and I have never felt any different because of it. Please post what you find out.

[westof in reply to treedown]

Thanks! I had HDR Brachy 4/19 and 25 days of IMRT 6/19.

My doc just wants to check it out.

Best

[treedown in reply to westof]

I wish mine had wanted to, I kept asking questions and requesting tests. After a few months he said if it was going to be a problem we would know by now. Definitely will like to see what you find out. How are you individual WBCs looking? My biggest issues has been wit Lymphocytes.

[westof in reply to treedown]

Lymphocytes went from 7.1 -14.7 within a month

ALC remains steady.

WBC over the past 9 months- 4.4 4.4 4.85. 45 .465. 4.5 4.4 3.7. -.7 within a month.

[treedown in reply to westof]

Thats the complete opposite of my problem but those #s look different then on my tests. Mine went from 1839 to 221 from my baseline test to when I got worried. This last test they went to 713. Low normal is 850. Maybe your referring to percentage but that would also be good. Maybe he isn't concerned about any single one then. My total count last time dropped to 2.9

[SPEEDYX]

Are you experiencing any symptoms of MDS

[westof in reply to SPEEDYX]

From what I've read, early stages are asymptomatic.

I work as a self employed medical courier and walk between 4-5 miles daily (according to my smart watch). No fatigue!

Thanks

[SPEEDYX in reply to westof]

Let's trust that it not anything...my numbers have gone up and down.🙏

[westof in reply to SPEEDYX]

Thanks, I've read that it a rare disease and I'm not sweating this. YET!!🙄

[SPEEDYX in reply to westof]

Always something...Iam still fighting to get my psa to nadir..20 months!...was at 350 down to 22 in one month up to 39 next 6 months...now slowly coming down at 13 now...same as you feel good but always anxious with each test and every ache I feel.

[treedown in reply to westof]

I cycle a lot and while I have other side effects I have avoided fatigue and hot flashes so far. I just read more about it and will discuss with MO 9/23. The question the is if we do have it what to do? Its not like I can stop the cancer meds at least not all of them. I did consider not restarting Zytiga but thats a crap shoot so I decided to stay on it. My PSA is undetectable for now and my treatment is with curative intent so my RO said they will stop all meds 10/21 and see what happens. Of course that only depends if all things remain the same.

[westof in reply to treedown]

I'm off meds 12/31/2020 (taper down).

[treedown in reply to westof]

Keep posting please, what was your gleason score, treatment etc. I am a bit younger than you at 57 but seem to be on a similar plan.

[westof in reply to treedown]

Hmm... Here is my very 1st post (knock yourself out😁).

healthunlocked.com/advanced...

Best

[treedown in reply to westof]

Thanks looks like you have been in charge the whole time! Consider m knocked out and impressed.

[westof in reply to treedown]

Thank you!

I consider your kind words as a high complement!🥂

[treedown in reply to westof]

Good, as intended. Thanks for posting I have a few new creases on my brain and a few more quations for my MO.

[westof in reply to treedown]

Remember, "Rudy" was diagnosed in 2000 @ age 57. 😉

[treedown in reply to westof]

He wasn't stage 4 but he beat it and I have always liked hearing about people that beat cancer.

[Hidden in reply to westof]

👏🏼👏🏼👏🏼🚶🏻‍♂️

[treedown in reply to SPEEDYX]

I think thats what my MO was referring to when he said we would know by now as I never had any symptoms, yet.

[SPEEDYX in reply to treedown]

True

[timotur]

Sounds like your MO is keeping the lab busy... low WBC's is one of the SE's listed for Zytiga. My WBC's went back up when I dropped it....

medicalnewstoday.com/articl...

[treedown in reply to timotur]

Thats what I am hoping for. There was a trial where like 70% of the participants had lymphocytopenia after radiation and zytiga and all recovered. These are the things that help me sleep at night. Thanks for posting.

[timotur in reply to treedown]

Oddly my RO's nurse doesn't think IMRT lowers lymphocytes. I tell her every visit there's ton's of studies saying it does. I think we've discussed before, but mine dropped from 1125 to 250 right after IMRT while on Zytiga, which I dropped shortly after that.

[treedown in reply to timotur]

Your may be right about discussing this prior asnit rings a bell. My ROs standard response to everything harmful was there's no indication radiation causes that, blah, blah, blah. Didn't matter I had made the decision, he had me with "curative".

[westof in reply to timotur]

Acknowledged. My MO is formerly from MSK and now heads up the Whittingham Cancer Center in CT. He suffers from an overabundance of caution (God bless him!)😇

[treedown in reply to westof]

Lucky you my MO seems like he is sleeping through our meetings but pretty much does whatever I ask, so there's that.

[timotur in reply to westof]

Sounds like he's covering all bases, including the front office who writes the check.

[Hidden in reply to timotur]

There is that!😳

[Hidden in reply to timotur]

Awesome.

[Kaliber]

I have a thought .... I don’t know what that is, but I don’t like the sound of it. You already have your plate full as it is, you don’t need anything else going on . Tell your oncologist thanks but no thanks ... heck with that. You keep it. Tell him kaliber said “ NO “ .... 💪💪💪👍👍👍 🦋🌻🌸🌵🌼🌈❤️❤️

[SPEEDYX in reply to Kaliber]

44 kaliber if he doesn't listen

[Kaliber in reply to SPEEDYX]

Yea that’s right ... he better watch out or I’ll go over there. He’ll be sorry. I’ll sit in all his chairs ( they’d collapse ), lean on his counters ( fracture or break ) , pee in his toilets and miss and eat everything in the employee refrigerator ... that’d show ‘em. What they going to do to a nearly adt disabled grey haired old stage 4 M1 croaker - biker ? Nothing , nothing at all ... I got nothing to lose yayahahahaya ya. Yayahahahaya. 😂😂😂😂

Sounds like fun actually ...👍👍👍👍

[SPEEDYX in reply to Kaliber]

Right on....that's what I like to see pure Passion

[Kaliber in reply to SPEEDYX]

Yayahahahaya 💪💪💪👍👍👍

[westof in reply to Kaliber]

LOL, Brother K!!

Compared to you, my plate only has a few crumbs on it.

Remember, you are the "One Tough Hombre"!!

Best,

AJ

[Hidden in reply to westof]

You are Alright!😷✌️

[westof in reply to Hidden]

Hey Scott, earlier this evening I read 4-5 articles re: MDS and I'm not overly concerned.

My guess is that it might be the combo of radiation and Zytiga that is causing the lab results.

I'll just check it out.

Thanks,

AJ

[Hidden in reply to westof]

The head honchos will reply soon . I think it a side effect that will better the further you get from treatments . 🙏

[Kaliber in reply to westof]

Yea well I think I’ve finally kicked that second skin cancers a$$ now. That Big huge hole on my forehead down to a small thing with a medicated band aid on it now. None of those huge bandages and $10 a pop silver impregnated dressings now. The second breakout on my nose I did my own cryogenic treatment, fashioned my own focused cryo probe and hammered the heck out of that one when it went back to a bloody open hole ..... then waited a day and “ double “ froze it until I couldn’t stand any more. After the freeze blister healed, no sign of that POS now. ( benefits of being an experienced biomedical engineer ) I’m not saying it’s not gonna find another way to come back or more aren’t going to pop up, but for now looks like I can return to my regular plate full of debilitating adt - PCa yayahahahaya. I thought I had it bad with just that but now ... goofy as it sounds , I’ll be kinda glad to get back to that stuff yayahahahaya. My plate more manageable pretty soon ... thank goodness.

Thank you brother for the nice thoughts ... Screw this disease stuff and the bugs it rides into our bodies on. Yayahahahaya

😄😄😄😄😄 🌵🌻🌸🌼🦋❤️❤️

[Hidden in reply to Kaliber]

I-5 was a gauntlet of RVs , u-hauls, more like and exodus from hell to the south ... Last time was pre covid and pre fire.Remembering the spectacular almond bloom . Now so Freaky .. you’re smack dab in the middle ..of it . It’s a fine line on the edge for us all. I’m nowhere near suffering like you and so many other fine gentleman are here. My heart go to those that suffer the most . For the ones skating by like , we know we are on thin ice. Our fearless leader says “ It’s going to start getting cooler”! God bless him! The west needs years off rain .. Without this help from above the fires wont stop .

[Kaliber in reply to Hidden]

Boy , isn’t this stuff something .... I’ve been over at the coast for a while ... pretty clean skies and often nice fresh air right off the ocean. Drove back to Fresno , skies very dark .. one to two mile smoke visibility. When we left ..remember the sky was dark orange red and no sun shinning thru. Now the red is gone and the sky is dark grey ... looks like twilight ...ash raining down, looks like snowflakes ... choking acrid smell of smoke. The temps have dropped 15 degrees because no sun can get thru. They just started evacuating Three Rivers , a town just south of Visalia , south of here. There are food handouts all over town, people camping in large fenced in fields and parking lots ...tv news showing endless videos of 100s of burned houses and endless miles of beautiful Sierra forests now charcoal sticks. This is awful and the big fire here isn’t expected to have much containment until the middle of next month.

I’ll bet you’ll be glad to get back to some sanity and much cleaner air to breathe. I might come over and move in with you guys for a while ...that’d be kewl huh ? Yayahahahaya yayahahahaya yayahahahaya. Probably not.

Peace buddy 💪💪💪✌️✌️✌️ 🌻🌼🌞🌈🦋🌵🌵🌵

[Hidden in reply to Kaliber]

The air is 98% clear here in comparison . That could change with no rain on the horizon . 🔥

[Kaliber in reply to Hidden]

Ok ..... you convinced me .... I’ll be right over !! Yayahahahaya yayahahahaya. You are lucky there .... even the air here is called dangerous with smoke pollution on the news. They are warning everyone to not go outside ... yikes. The way things are going, there won’t be much left of beautiful California or those wonderful High Sierra mountains.

[Hidden in reply to Kaliber]

I took a couple photos that would halt anyone from going to Cali now. John Muir is rolling in his grave. All of the big fires are on fed land. Why not ? next pres,? start a national forest management plan ? Like the CCC...did did in the Great Depression .. Be well

[Kaliber in reply to Hidden]

You’ve seen it yourself ... you know how bad it all is Buddy.

❤️🌸🦋🌲🌳🌵🌵

[Hidden in reply to Kaliber]

Inexplicable 😳🔥

[treedown in reply to Kaliber]

I had that same feeling toward the end of radiation, lookin forward to just lupron and Zytiga. Don't tell the doc your working on yourself they might get mad at you for keeping a few dollars out-of their pockets? Worse if they pull some I have to charge you double because I have to fix your work like a mechanic

[Hidden in reply to treedown]

Towards the end of radiation . Stuff starts to happen . The last day is a miracle . I was put on maximum glow.. a couple years ago and then tree years after imrt I went to the hospital to get a hip X-ray. Just the sight of that black and yellow radiation

Symbol did something to me ??. After the x-ray. The dr told me , yah , your hip is degenerating! But that’s not the real problem , you’ve got not disc from your L-5 down . I ve turned into spaghetti man now... I exited the hospital. Started spinning got down on my Knees beside my car and tossed my cookies .. I was loopy .. Severe nausea was a factor after imrt . It all came back to me . Don’t like hospitals much . Never did . I think they are a bad place to die .

[treedown in reply to Hidden]

Dude that's brutal, glad its behind you. Your still kicking its ass so keep it up. Clearly what didn't kill you made you stronger.

[Hidden in reply to treedown]

Oh no ! That doesn’t apply at all to any advanced prostate Cancer treatments .No one is made stronger by them .. If one lives . He ll be greatly diminished . That’s my sob story and my truth . However It doesn’t break my love of life . The flesh is weak.. The spirit is strong . We kick the can 🥫

[treedown in reply to Hidden]

Understood, but strength comes in many forms. Say what you will and despite not having met you in person, you exude a strength IMO.

[Kaliber in reply to treedown]

I hear that brother .... you’d think plain ole stage 4 advanced cancer would be bad , along with adt .... and boy howdy it is ... start piling on extra cancers or nasty treatments , bone damage and things get to be too much. It’s plenty hard enough to get adjusted to regular ole terminal cancer - adt. Kripes ... the trials that are put on us by this stuff can be pretty difficult sometimes, it takes a lot of personal strength and determination to overcome those. Shows how you and the rest of the guys here are so amazing to be able to persevere.

I’m actually a retired biomedical engineer ... I’ve custom fashioned cryogenic probes in live procedures dozens of times. There just isn’t one applicator that does it all. Those liquid nitrogen squirters spray a wide spray causing too much collateral damage ( IMHO ) So clinicians use the foam applicators but with those too, there simply isn’t a good selection of tips. At work I discovered you can modify the shape of the conical foam applicators with dental floss and the dental floss won’t crack to pieces and fall off on the floor like a lot of other organic materials do. ( it was trial and error tho ) I can reshape applicators to pencil points and other shapes best suited for that particular medical procedure application. I like to form the tips to also hold a few drops of cryogenic liquid to intensify the effectiveness of the treatment. I wanted to concentrate the treatment directly on the cancer with as little collateral damage as possible , not blast the general area and hope I got the cancer hard enough.

If you knew the 2 1/2 year saga behind the three botched surgeries on that cancer on my forehead, you’d understand doing it yourself if possible yayahahahaya

Next I’ll probably get a tray of sterilized instruments and a stryker saw , maybe one of those little stainless steel hammers ..... box of band aids .... some duct tape and do some brain surgery on myself yayahahahaya yayahahahaya

Peace buddy 💪💪💪👍👍👍😂😂😂😂😂

[Hidden in reply to Kaliber]

As a fair haired sun worshipers I’ve expected he sc for years now.... something deadly if not caught ahead of time. I’ve seen guys with noses off and more . Mother fuck if I still don’t like to warm in the sun on a cool day .. why are such simple pleasures so bad for us .? Our bodies and minds are not designed in my opinion to live into old age comfortable for most . I Quickly turned from 53 to 83 over night. One hell of a blow . Others got it worse .Maybe you spent too much time in the lab?? I can’t fathom all of the hats that you’ve worn .?? 🌧🌧🌧🌧🌧🌧

[Kaliber in reply to Hidden]

It does seem like everything fun is bad for you : sun worshipers get skin cancer , getting drunk gives you hangovers and dead livers... too much food makes you fat and high blood sugar ...... and getting married gets lazy jobless adult children and your butt kicked for 20 years or you make 20 years worth of alimony payments .... What’s with all that ..... huh .... yayahahaha yayahahaha. 😂😂😂😂😂😂 life is fickle...

Love ya buddy ❤️❤️

[treedown in reply to Kaliber]

Yea, whats with that.

[Kaliber in reply to treedown]

Yea exactly yayahahahaya

[treedown in reply to Hidden]

I feel the same way about hanging in the sun. My brother already dealt with sc. Its our pancy ass Swedish skin I guess. I stopped laying around burning like I used to but I suspect the damage is done already so waiting. Kaliber definitely has been through the ringer and is still winning. I watch people I pay to work on my house so I might be able to do it myself next time, sounds like he's doing the same thing with medicine.

[treedown in reply to Kaliber]

Well when you open for business let me know, if something pops up I'm heading your way

[Kaliber in reply to treedown]

Ah ..... then there’s always the medical liability issues ... yayahahahaya. You can do on yourself but not into others yayahahahaya yayahahahaya. Alas ...

I’ll tell you how to do it yourself, it’s extremely simple and easy.

Just say’in 👍👍👍🌸🌵🌼🦋🌈

[Hidden]

Tuff cookie!

[SPEEDYX in reply to Hidden]

Tough enough...Fabulous Thunderbirds

[Hidden in reply to SPEEDYX]

“Ain’t that tuff enough “? Saw em live ..also SRV live playing Texas flood and “ the sky is crying “ classic

[SPEEDYX in reply to Hidden]

Nice....how about The Mavericks

[Hidden]

Thanks , hadn’t heard of them before . I’ll check them out 🤙🏽

[Kaliber]

Brother AJ, .... a few of my bloodwork skirt along right outside my lower green limit ... they just kinda hang there never changing much . My wbc can be 9 something one month and 5.1 the next ... 6.2 ... 9.8 ... 5.1 .... and my lymphocytes 37 and then 23 ... not as low as your but highly variable. My GP said we’d watch for a trend , like plunging wbc but it seems random like the analyzer is broke. Drives her crazy. You are in great healthy physical condition ... good to go. those four and high three wbc’s are still in the normal range ... I think you said it went from from 3.7 down to .7 if I read that right ... maybe , like me , next time it will spring back up again ... a fluke test result. Everything 3.7 to 11 is ok and you have been there nearly every time. If it plunged to a .7 ... that seems oddly quick .. probably see some more tests to be sure ? Dunno .... just say’in.

💪💪💪👍👍👍

[westof in reply to Kaliber]

No, it went from 4,4 in August to 3.7 in September (-7). I'll just wait for more tests.

Thanks

[Kaliber in reply to westof]

Oh ..well that doesn’t sound too bad ... you aren’t even outside the normal range. Might be something but everything in decent range right now ..... shoot doooooooode .... all that could be “ way “ worse yayahahahaya. I wish my wbc looked as reliable as yours . You are on the low end of green tho .... worth keeping a close eye on. I’m thinking positive vibes for you big guy ... a guy in your great shape can shine this on ... easy breezy.

💪💪💪👍👍👍

[Hidden in reply to Kaliber]

AJ is OK !

[Stevemarr]

I had MDS before cancer diagnosis, Low grade. Not a major problem but does limit some treatments. My MO does not recommend chemo as a resault.

[westof in reply to Stevemarr]

Very encouraging!😃

Thanks

[rscic]

Let your Doc check it out and remember you do not have a diagnosis yet but need to eliminate any bad possibilities. Doc's, for good reasons, have a particular mindset when they see an abnormal finding ..... "What is the worst but most likely thing this can be?" and then see if it is that .... often it is not but an explanation must be found.

[westof in reply to rscic]

Hmm... Hear you loud and clear!

Thanks

[westof]

Hmm... My MO got back to me today Re: WBC, MDS and this email I sent yesterday:

"Hey Doc, Just reviewed the Norwalk draw results and compared them to the YNH results 3 weeks earlier. Everything appears to be consistent, except for the WBC increase ( from 3.7 to 4.8!)

Did a post mortem, trying to recollect anything I had done to affect my 8/25 draw. I did have a pneumonia vaccination 3 days prior. Relevant?

Have you been able to look under the microscope for further analysis?

Have read much about MDS and not concerned yet.

Best,

AJ"

Results: zip, nothing, nada! He peered with his microscope and my cells are normal.😃