56 replies to this topic

[Tedsey]

Dear Gerry,

If anyone shouldn't have to wait, it should be us!  Waiting for a PCR is absolutely enough for a lifetime!  Hope it is nothing and your gyne just wants info on the CML.  Calling you on a Friday may not make it into the totally insensitive file, but I feel it belongs there.  It is clearly lack of empathy when a doc cannot entertain a patient's anxiety over such a call.  It is not very kind to leave this hang over the weekend.  They really shouldn't do this unless they can be reached on a Sat. or Sun. (or evenings!).  Of course, since I am usually civil (and maybe too much of a masochist), I do not call the emergency after hours number.  However, I don't think it would be horrible to do this.  Inconveniencing your doctor a little sure beats obsessing over a weekend.  He or she should know better.

Thinking of you,

Teds

[jjg]

Having to wait sucks. Maybe she just wants to tell you everything is fine because it is your first smear since CML. Even if it was an abnormal result they'd probably do nothing over the weekend other than letting you sweat all the possibilities.

My CML dx took forever. Annoyingly my doc puts the dx date down as the 15th when she got the BMB results but didn't tell us until the appt on the 21st. Hubby says we had 6 extra days without knowing CML was our new life  - hmmm pretty mellow. Hope you can find some mellow space until they get round to being available.

You could definitely justify some nice chocolate or icecream to help with the waiting.

[GerryL]

It will definetely be something odd showing up, she said they wouldn't contact me unless something showed up. I might get her to talk to my specialist to make sure Gleevec doesn't make our cells do something odd in the test. After that I figure I'll either get another test done or be off to see a Gyn I guess. She's my favourite GP so I can't bee too hard on her.

[SunNsand]

Glad everything turned out well for you. I can't imagine the extra stress you must have had. I had a similar experience. During a pelvic, my gyn didn't like what she was seeing on my uterus. She decided she wanted to take a few snips. It was torturous, my uterus kept slipping out of the clamp she was using to hold it and I layed on that table with tears running out of my eyes. That will never happen again unless I am knocked unconscious. The end result was the same as yours. She said it must have just been irratated, but this was yrs. before my TKI, so apparently irratation can happened anytime. I have been married for 33 yrs. and after reading what Trey wrote, he has given me some food for thought.

[GerryL]

I went back and reread what Trey wrote:

"8% of adults in the US have HPV.  So if the PAP test only detects HPV, and only 8% have it, isn't it a waste of time for many monogamous women?  But docs think that no one should ever be trusted, so they expect regular PAP tests.  Just sayin' the docs might trust the input of women patients a bit more as to whether the test is really necessary."

I guess we are assuming that monogamous women always have monogamous men, since men can pass the issue along.

[Happycat]

Hey, ladies,

Not much time to post, but wanted to share the info I got from my ob/gyn.  I had cervical dysplasia back in 1989-90 timeframe, before they knew HPV caused it.  Anyway, the last pap smear I had in 2007, they used the newer test and told me if it came back negative, I would not need to get another pap for 3 yrs - something to do with the statistics of cancer occurrence after a negative test result.

So, fast forward 4 yrs later.  My ob/gyn's office did not call me back in the 3 yr timeframe.  They only called to set up a new pap test about a month after my CML was dx'd.  Talk about freaking me out with worry!  It turns out the NP who should have called me back left the office, and apparently it took them awhile to realize they needed to check those records she was responsible for.

Anyway, when I saw my ob/gyn, she said she wouldn't be surprised if the pap popped up with a positive test result because I am on TKI therapy.   (She's had other patients on Gleevec in the past.) There is apparently enough of an immunosuppressive effect that it could allow an HPV infection to occur or reawaken if already present.  So she scraped that little toothbrush all over my cervix and, boy, was she thorough, felt every little bit of it, too!  I've been on vacation, and haven't heard anything yet.  It might take a few weeks to come back.  She said it looked okay from her view when taking the sample.

The other interesting tidbit I learned was that the pap test doesn't look for EVERY strain of HPV.  It only looks for those strains that are deemed "high risk" - i.e., likely to cause cancer.  Thus, a low risk strain of HPV could be present, but would not be detected by the test.  Since my original infection occurred before they tested the strains, I have no way of knowing if I had a high or low risk type of HPV.  We both agreed that there was no way I was going to do the 3-year followup paps anymore, since we just don't know how the TKI might change things.  So I am back to yearly paps, which I prefer anyway, since it is so much easier to remember - one mammo and one pap per year.

Traci

[GerryL]

My results are a low grade positive. For me I think it is due to the Gleevec, it does enough odd things with my skin cells that I figure it would have an influence in a pap smear result. I will have another test in six months. One thing with cervical cancer it is a slow growing and can take about 10 years to develop, so there is plenty of time to do something about it if worse came to worse.

[PhilB]

Hi Gerry,

You definitely have my sympathies.  It really isn't good having a possible second cancer hanging over you and I hope the next test comes back clear and that you somehow manage not to be too stressed by it over the next 6 months.

I just had a prostate biopsy myself this morning and now have to wait on results.  Nothing like as unpleasant as Tedsey's description of her cervical biopsy, but I'm definitely feeling like I made the mistake of bending down to pick up the soap in the prison showers.  I also feel sorry for the radiologist's wife as he's clearly not a big believer in foreplay!

Tedsey, reading your comment on your cervix being irritated by the TKIs, I think we may have solved the problem of your slow progress.  They're supposed to be taken orally!

All the best

Phil

[jrsboo]

OMG, Phil you are too funny!  Thanks for the giggle (twice) first thing in the morning!  Loved the wife comment and the comment to Tedsy. 

Caroline

[Marnie]

Phil. . .you crack me up!

[Tedsey]

Traci,

That is practically verbatim what my gyne said.  She told me that most women on immuosuppressant drugs in her experience normally come out with some kind of abnormal pap (not always HPV though, sometimes just funky cells).  Moreover, chemotherapy, TKIs, etc., may help a dormant HPV virus rear its head (about the 8% of females with HPV, I believe that is only a stat for those who have detectable HPV).  My gyne said it lays dormant in most women and the immune system normally will keep it that way forever, therefore, undetectable on a pap, etc.

For us, I think yearly paps are reasonable.

All the best,

Teds

[Tedsey]

I am on the 6 month plan too for the same reason (my cells were reported as "irritated"---no one could explain what that was exactly).  It appears our gynecologists, although on two different continents, are on the same page.  It is probably the "new normal" again.  Ugggggh, that term has become so cliche.  Sorry.  Here is to your good health Gerry!

Teds

[Tedsey]

Phil,

Really?  Not aboral?  For the life of me, I could never understand why people complained about side-effects...  Oh well, so much for the kick in my pants.

Thanks for clarifying,

Teds

[GerryL]

Hi Phil,

Can't imagine the level of stress you're going through at the moment, at least when I had my test I had it in the back of my mind that I might get an abnormal pap smear.

My aussie humour fails me at the moment, so I've borrowed from somewhere else http://prostatecancerblog.net/?p=41

"Biopsies are no joke, but a physician claimed that the following are actual comments made by his male patients while he was performing their biopsies. I must say I was excited to see this, because there is a lot of potential humor in biopsies." [Also, DRE's: seems like everyone has a pet name for these.]

{1} "Take it easy, Doc. You're boldly going where no man has gone before!"

{2} "Find Amelia Earhart yet?"

{3} "Are we there yet? Are we there yet? Are we there yet?"

{4} "You know, in Arkansas, we're now legally married."

{6} "Any sign of the trapped miners, Chief?"

{7} "You put your left hand in, you take your left hand out..."

{8} "Hey! Now I know how a Muppet feels!"

{9} "If your hand doesn't fit, you must quit!"

{10} "Hey Doc, let me know if you find my dignity."

{11} "You used to be an executive at Enron, didn't you?"

And the best one of all..

{12} "Could you write a note for my wife saying that my head is not up there?

Hoping your results come back as negative.

Take care.

[GerryL]

Hi Teds,

Great word you used there - aboral. I had to look it up to find the meaning, I think you've beaten Phil and Trey with that one.

I'm hoping that our results are just gliches from what the TKIs are doing and don't progress any further, but we definitely need to keep a close eye on what is happening. I've decided I'm not going to stress about it, if it ever turns high grade then I'll worry.

How close are we to your BMB - I think I'm starting to get stressed about it and I'm not even having it.

[PhilB]

Hi Gerry,

I have to say I loved some of those!

You're not wrong about the stress - especially last night when I wasn't allowed any alcohol at all having had antibiotics three different ways - orally, intravenously and, as Tedsey would put it, aborally.  Tonight, however, ...

[Tedsey]

BMB August 8th at 1:30pm.  Please think of me...  Hoping I can find a sitter who will watch the kids long enough so I can have a nice, late lunch.  Ethiopian, Ethiopian cuisine at my favorite restaurant...I will focus on lunch with my husband, lunch with my husband...  At least, it is something to look forward to when I will have a literal pain in my butt.  Lunch was so nice a couple of BMBs ago.  The last one we had to hurry home because my sister in law was pushing us to hurry back (she always does this).  What dawdlers!  For shame.  I would never wish a BMB on her, but...she doesn't seem to get it.

[Tedsey]

Phil,

Best wishes from across the pond!  Hoping all turns out well for you.  Keeping fingers crossed.  Sorry for all the discomfort.

Teds 

[Marnie]

August 8th.. .I'll be thinking of you.  That's our first day back at school, so we'll both be having a pain in the butt. . .but I think yours will be more uncomfortable.  Mine will just be a day of sitting in meetings being yacked at, while I'd rather be in my classroom getting ready for students.

Take a long, long, relaxing lunch with the hubby.  That sounds nice.

Marnie

P.S.  Why get a sitter?  I thought you just left those kids home with biscuits and a littler box!!  You mean you were just joking about that?

And, oh yeah, I'm so glad to hear that you are now taking your meds correctly.  I've found PhilB's posts to be awfully helpful at times, too.  I think I may pass on the motorcycle parking advice, though.  Don't want to scratch the paint.

[PhilB]

Hi Tedsey,

I have to say the discomfort of the biopsy has been nothing to the stomach cramps I've been having every five or ten minutes for the last 36 hours because of a reaction to the antibiotics.  I'll never complain about Glivec again!  (And if you believe that...)

Phil