5 replies to this topic

[LivingWellWithCML]

Hi everyone,

It's been smooth sailing for me so far on Gleevec 400mg (5% FISH @ 3 mos and rapidly decreasing PCR) with the 6 month PB blood draw coming in three weeks.  My body feels great and I have been running & working out steadily ... I might even be in the best shape I've been since college.  Amazing what a chronic cancer diagnosis will do to your fitness priorities.  And this board -- as always, I just can't say enough about the amazing support this group of folks is.

Anyway, I had really hoped and prayed that I wouldn't need to visit the onc prior to my late-Oct appointment, but here I am on 9/22 (CML Awareness Day) leaving a message for my onc to try and get in for a check as soon as possible.  In the past 3 to 4 days, I have developed a swollen lymph node on the left and right side of my neck (a little more pronounced on one side).  Throat's a bit red (not sore though), but I went to my primary care doc yesterday and was strep negative ... and he didn't seem concerned.  He wrote me a Z-Pack antibiotic prescription as a precaution (which I have not filled yet, cause it doesn't appear to be strep).  I don't appear to have swollen lymph nodes anywhere else.

I've been following our various group threads on CML progression/morphing and such, so obviously I'm concerned that something could be up.  I've been a bit short on sleep here & there with some heavy work travel and a couple of red-eye flights over the past couple of weeks (ouch), but other than that, I feel terrific.  My kids are back in school and all kinds of fun stuff's been going around (my youngest had strep last week), so I am certainly hoping that's all it is.

Any of you all gotten swollen neck lymph nodes while on treatment ... from just the real life situation of infection?  If so, how long does it usually take for the swelling to go away?

What does an onc look for to decide if it could be more serious and warranted for a BMB?  High lymphocyte count/%-age on the CBC?

[CallMeLucky]

I had this a short while back, was really bugging me thinking it could be lymphoma on top of cml.  That would be unbelievably rare.  While anything is possible, it sounds like you have the typical swollen glands that come when the body is fighting off something.  This is the time of year.  Both my kids came home with colds, I have been using my netty pot to try and keep ahead of it.  Felt a little something the other day but I'm hoping I am beating it.  A few weeks after my nodes settled down my wife had one in her neck blow up.  She looked like she had something growing out of the side of her neck it was that pronounced,  I would have freaked out but knowing what I know now and the fact I had just had them led us to believe it was nothing.  They went away after a while.  And just so you know my hung around for a while before finally shrinking back down.

Sounds like your immune system is doing exactly what it is supposed to be doing.  I don't blame you for calling the doctor, always best to be prudent, but I wouldn't worry about it at all.

[LivingWellWithCML]

Thanks Lucky; you're reading my mind -- it's the first thing I thought of.  How rare is this situation (lymphoma, CML->ALL morphing, etc.)?

The CML specialist's nurse called me back just a little while ago and told me to fill the Z Pack and take it (it's what Dr. Khoury @ Emory said after reviewing my issue).  He said that I didn't need to come in for a CBC and that there was "zero reason for concern".  I'm having a hard time soaking that in ... for some reason, I was expecting them to drop everything and rush me in today (kinda like what you went through recently).  Regardless, I have an early AM appointment tomorrow w/ my local onc and will get a CBC and have her check it out.

About how long did it take your nodes to shrink?  Did you have to take any antibiotics by chance?

[Trey]

Normally this is just a "watch and wait" issue to see if it persists.  Likely it is not anything serious, but keep records of what happens and when.

[Tedsey]

Since dx, I have had a swollen node in my groin.  I was just told not to touch it because it would get bigger.  I often have swollen glands in my neck and the one in my groin is bulging.  However, I am suffering this year from horrible allergies.  Of course, like you, the worst always crosses my mind first.  Didn't the worst already happen to us--why not again and again?  But I have to agree with the odds.  It would be extremely rare that you or I have also developed lymphoma.  We probably stand a better chance of being hit by a piece of scrap from the satellite that will re-enter the Earth's atmosphere in the next few days.

Good luck and good health,

Teds 

[LivingWellWithCML]

Thanks everyone - amazing how CML amplifies everything moving forward.  My local onc told me the same re: odds -- definitely a bit of a relief.  She ran a CBC and everything looked fine ... also said that my lymph nodes were only mildly swollen and would feel more "rubbery" if we were dealing with a real problem.

Better safe than sorry I suppose!