Ok...

[Wildewolfe]

Not sure if I should post here or not... haven't been diagnosed yet... might not be. It's certainly been a anxiety filled 3 weeks.

I'm in a cholestorol drug study so they take blood tests on me all the time. A couple of the values came back cocked up (WBC and ummm... neutrophils) both being high I guess and 3 weeks ago the family doc called me at work out of the blue and asked me to come down and see her. She had reviewed the chart and they had been high (some of the other wbc types high as well) for months and she wanted me to go see a hematologist. Ok...no big deal... go see a specialist. I had never seen a hematologist before... might be interesting. So I walk out of her office at pretty much straight up 5PM and call to try to get an appointment... get the recorded message... thank you for calling Dr and welcome to the Porter Hospital Cancer Care center... Now at this point being the naive person I am I didn't realize that Hemotologists tend to double as oncologists... I just start hearing the one word the family doctor did mention during the appointment... leukemia... needless to say... long long weekend.

Monday comes around and I call the Specialist and make my appointment... it's the following monday. I take a handfull of bloodtests from my records down to see her and she's telling me not to worry that looking at those she's pretty sure it's nothing too bad... and probably caused by my smoking... ok...this I can deal with (in fact I've quit since then). She's a really nice Doctor and was pretty much all smiles and made me feel comfortable. Just need to do some blood work to check a few things and come back in two weeks... should be all clear.

Two weeks roll around. She's not smiling (noticable change in demeanor... still a nice person... but no longer discounting things...) when I get to the office but wants to talk to me about the blood tests. WBC counts are still high... and one of them... ummm ... leucocytes? (sp) are misshapped and we need to do more blood work and btw... we need to do a bone marrow biopsy. We continue down the blood work and there are more abnormalities... there is a marker came back positive for auto immune something or other that could indicate lupus (I'm male so it's really unlikely) and other weirdnesses... but I feel mostly fine... just really tired. All this from a phone call out of the blue... So more tests coming... nothing is ruled out at all and the list of possibilities (virtually all of them really bad) keeps growing. Is this how the diagnostic process for this stuff works? I did the army infantry gig years ago and I'll tell you this not knowing is 10x the stress...

In any case thanks for listening...

[pecwae]

1. I'm really sorry to hear this.

The diagnostics can take a while sometimes and the waiting for results is high, high stress!

Stop by anytime you need to vent. You have a lot on your plate right now and talking about the experience can help.

[flamingyouth]

2. The waiting is the worst.

I'm so sorry to hear you're going through this. Please keep us posted, and I'll be holding good thoughts for you.

[Wildewolfe]

3. anyone have any idea...

...on how bad this bone marrow biopsy is gonna be? I've heard everything from a pinch to living hell and it's gonna hurt like blazes for a week. Just trying to figure out what to plan for. Being a single dad with a 12 year old hellion surprises are not exactly my favorite things in life.

[pecwae]

4. I've never had one

and, like you, have heard it described the same. It all depends on the individual. My father had the procedure and never batted an eye, but that doesn't mean I could have gotten through it like that.

On my cancer journey I've found that I react a lot differently to things than others. I could take Taxol without premeds, unlike most, because I had a reaction to the premeds. Then, I developed moderately severe neuropathy from the Taxol after only 9 treatments and had to stop.

Can you arrange to have someone you can call on in the days after the procedure in case you or your child need help? You may not need a thing, but it might ease your mind to know help is available if necessary.

Let us know how you're doing.

[LeighAnn]

5. A lot of places offer sedation

I've read websites of cancer hospitals that offer sedation for a bone marrow biopsy as a matter of course. I would ask about it (I would insist upon it, actually, because I'm no good about medical procedures).

Best wishes to you and try not to worry! I know that's easier said than done, but please try to keep very busy and keep lots of magazines and funny stuff around to focus on when your mind starts to wander.

~*Peace*~

[OzarkDem]

6. It does seem to be taking a long time

sorry you have to go through so much stress. If there is a larger cancer center in your area you may want to consider going there. They may be better equipped to figure this out faster.

Keep posting here if it helps relieve some of the stress.

[Wildewolfe]

7. Made it through it...

The biopsy was yesterday. It was one of the worst procedures I have ever been through and I've been through some not fun things before. The procedure didn't go well. What was supposed to take 5 mins took 35 mins. what was supposed to be 2 pokes was 7. In short it was pretty much a nightmare.

At least that part is over now... now the wait for the next doc visit... Aug 7th...

[OzarkDem]

8. Hang in there!

Try to relax and not worry too much! :hug:

[Imalittleteapot]

9. I never wait for them to call me for test results.

Stress causes all kinds of physical and mental problems. That you have to wait until Aug. 7 is absurd, unless the results absolutely positively will not be available to the doctor until then.

My doctor told me he would have the results of my breast biopsy in 3 to 5 days. A technician at the biopsy told me that the results would be in the next day. I asked her to call me when the tests were analyzed - she did the next day.

Recently I had a CT scan for suspected hydrophrenosis and was told by the doctor that if I didn't hear from him 3 or 4 days to call him. Again, a technician told me that the results would be available the following day. I called the doc 2 days after the scan and got the results.

I would rather get stressed by reality than wonder. I've adopted a take charge attitude that has helped me get through all of the medical crap.

My best to you.

[pecwae]

10. Oh, that sounds awful!

I've also found that results get in before they tell you they will. In fact, with all my scans at UNC I get the results the same day, so I know it can be done. All my biopsies were done on a Friday and I got the prelim results on Monday. Two weeks is a ridiculous wait! If this starts tearing you apart, just call. :hug:

[flamingyouth]

11. Geez.

That sounds awful. They have really put you through the wringer here. Holding good thoughts for your Aug. 7 appointment. Take care. :pals:

[FuzzySlippers]

12. I'm so sorry it was such a terrible ordeal.

:hug: I agree with the others that 2 weeks is a ridiculous time to wait. My biopsy results were back the next day, although they weren't bone marrow biopsies. I'd call and see if you can shake things up a bit. Best vibes coming your way that you receive good news.

[Wildewolfe]

13. Called them today...

...no results yet...

Have to admit I didn't care a lot about the results the last couple of days... amazing what a literal pain in the ass can do to focus you...;p

The procedure pain though is noticably down (procedure was monday... hurt like blazes till I woke up this morning) and now the waiting begins.

I know the doctor herself goes on vacation next week so hopefully they will call me before she goes. Just give me normal, abnormal and we'll talk on the 7th, your a mutant and we need more tests... any of the above and I think I'll be happy... just let me know something... ambiguity is going to drive me nutters I think (short trip on my best days...I think I can get there in reverse right now).

[FuzzySlippers]

14. I'm glad the pain has lessened.

Hope you hear some news soon and that it's good.

[Wildewolfe]

15. Finally got the results...

.. and it all looks pretty good... all the tests came back negative for the Leukemias and lymphoma's. There are misshapped cells, but statistacally not enough to worry about, and all the genetic studies came back negative. So all in all it's very good news. The ironic part is what got me here to start with is having a continually high wbc count... the bone marrow biopsy diagnosis, after I spent 35 minutes looking up words I had never seen before, was basically you have a high wbc count... so... 2nd verse same as the first... no answers as to why. So... I'm in a holding pattern with follow up blood tests every 3 months and a trip back to the hematologist/oncologist until something changes I guess... but you know... that's ok... I'm a lot more appreciative of time now than I was before this happened.

I did want to thank all of you for letting me come here and be scared...was probably the most nervewracked month of my life but I did get one thing out of it... it scared me enough that I actually succeeded in quitting smoking after 2 packs a day for 24 years. In anycase, the trip has been a learning experience, my best friend starts chemo tomorrow for MS with a pretty nasty drug and because of all this when his doc suggested it we were able to talk about it more in depth.

Thanks again guys... it was most appreciated.

[FuzzySlippers]

16. That's marvelous news, Wildewolfe!!!

:bounce: :bounce: :bounce:

That's great that you've kicked the habit, too! Believe me, we don't want to drum up any more business for this forum. We're always happy when someone gets good news!

[pecwae]

17. Good news all around!

What a relief. Many kudos for kicking the habit, too. You're doing yourself a good turn there. I'm glad we were of some comfort to you.

[flamingyouth]

18. I'm so glad you got good news.

And congrats on quitting smoking - that's a huge achievement. :thumbsup:

Allergies can sometimes cause an elevated WBC count.

Sorry you had to go through all those nasty procedure but glad it all worked out in the end. :pals:

[Wildewolfe]

19. They tell me...

... it's the wrong type for allergies... it's neutrophils that are contantly elevated (15k or so). Time will tell I guess and I'm really happy about the news being so good.

So far I've been really lucky.. this is cancer scare two that stayed just a scare (skin cancer before, still treating dozens of actinic keretosis things. The stuff just doesn't seem to want to stay away) so I have been really lucky. I've had several good friends not be so lucky so I'm not complacent in that luck at least not any more.

[Wildewolfe]

20. Don't know whether to laugh or cry...

Here we are almost 2 weeks after the good news on all the tests... cept one test came up weird (seems to be a trend sigh). So we're off to the races again in another direction to another type of doctor, a Nephrologist (had never heard of em before so at least I learned a new word). Seems right about the time we started doing all the tests and referrals for the high wbc counts something called serum creatinine went wonky too and it's now gone up a pretty good ways so. Family doc isn't sure what it means... only thing we know is it started sometime in June/July. We went over all the meds I take and didn't find anything overt there soooo... It's off to the kidney doctor to get tested for more stuff and why all of a sudden my kidneys are starting to not work so well and if it's reversable etc...

It's probably a really good thing we did the testing stuff we did when we did... we wouldn't have caught this till late september when next scheduled doc visit was cause I don't feel bad at all. So more testing... the only stuff I know they are doing is a prostate cancer test (don't see the relationship but hey I'm not the doctor...).

So... trying to stay positive and mostly succeeding in being annoyed and amused at it all.

[flamingyouth]

21. Oh dear - good luck.

You've really made the rounds! I know about creatinine levels from having elderly cats with renal issues. The Nephrologist may order a test called an IVP if he or she wants to get a better look at your kidneys for some reason (several of us here have had that). Keep us posted and hang in there!

[Wildewolfe]

22. I will....

... this is just getting so frustrating. Out of the blue stuff coming from blood test results is starting to wear pretty thin. And not just out of the blue but from completely different directions with essentially no warning. I'm pretty much agnostic but dang it makes me wonder who's god I managed to piss off.

I'm not going to look up that test I think... I made the mistake of looking up the bone marrow biopsy and the anticipation of it was horrid (the test itself was worse than the anticipation but still). I think at this point ignorance of what's immediately in front of me might be better for my sanity. I just hope they figure out what is causing it and it's reversable. It's gone from zero to serious in a really short time so hopefully there is a acute reversable cause.

[Imalittleteapot]

23. One thing leads to another.

The more tests they do, the more they find. That's been my case. Fortunately, a full body bone scan showed that my kidney was not draining properly due to scar tissue that had formed on the ureter from ovary removal. So, after a bilateral mastectomy, an oophrectomy and after finishing months of chemo I'm seeing a urologist who is trying to determine what will be required to get my ureter and kidney back in shape. It just never ends. Wonder what they will find next.

I just read that you quit smoking. How is that going? I quit - I start - I quit - I start. I am a loser.

[Wildewolfe]

24. Actually pretty well....

... Though it could be what's causing the kidney stuff...

I've never been able to quit before. I've tried patches, gum, welbutrin, everything and just couldn't quite actually quit. I had been smoking for 24 years pretty much 2 packs a day. I've been quit now for 45+ days with nary a single cheat which I've never been able to do before... not even close.

Just before the creatinine levels started jumping I heard about a new med to stop smoking called chantix which a lot of people I knew had had success quitting with.

I got it, started it and was able to quit. Whether or not it's the cause of my current issues notwithstanding, it really does work at helping you quit smoking... you don't even care if someone smokes in your face, it doesn't bother you, you simply have little to no craving for it.

Now it has a very common side effect of nausea which I got in spades for over a month every single time I took it for about an hour (30% get it but it usually fades), but it does work. (I still get the nausea if I don't take it EXACTLY how it says, with food and follow it with a full 8 oz of water).

The flip side, starting it is also coincidental to the rise in creatinine level. I had to go back through all the blood tests and scripts though to see the possible relationship. There is one other possible too so family doc wants to let the kidney doctor make the call. She's leaning towards the chantix though cause there is a listed "extremely rare" side effect of acute renal failure listed in the product info. (gotta love a doc who actually will listen to you). In anycase... I go see the kidney doc on the 31st.

I'm not going to make this a commercial for pharma other, particularly with what's currently going on, than to say the med works, but I think if I was doing it again it might be prudent to keep an eye on blood work. I was lucky that that was going on anyway. The nausea sucks balls and it happens to a lot of people from it, but it really does help you quit.

Edited to add:

The chantix only works on the PHYSICAL craving. It works great on that part. You still have to work on the psychological part. For me I got one of the fake cigarettes that when you inhale gives a peppermint taste just for that. Had to use it for about 2 weeks to get through the oral fixation part (yeah I know... that sounds really bad...;p).

[Wildewolfe]

25. still doing the go to doctor thing...

... got diagnosed with chronic kidney disease stage 2, still no word on an actual cause. The blood work actually has started to improve on it so that might be stabalizing or improving.. eh... I don't know... I know I actually feel better so can't complain about that part. I have some other ideas I'm going to ask doc about but really they seem to not have much in the way of answers.

If they ever figure anything out one way or the other will post. Thanks for letting me vent.

[seemunkee]

26. Best wishes to you

The not knowing just eats away at you. Hope you get some answers soon.

[flamingyouth]

27. Sorry to hear that.

I'm glad you feel better at least. Best of luck to you and please continue to keep us posted.