BJ is 7 mos MUD...had been dealing with no sweat glands and the heat really keeping him indoors, along with some joint pain...otherwise doing well. A couple of weeks ago he noticed two pea-sized lumps in chest area..called transplant nurse...team sure they were cysts or calcium deposits but still wanted them checked. He went today and had mammogram (not mentally ok for a 21 year old guy). Doc thenOrdered ultrasound to be done right away...another one detected in armpit...said he can't say what they are until he biopsies them next Wed...Uggg...BJ had CML original dx...any thoughts?! He then went over and had labs for Tom's 7 month check up. The nurse emailed them..all in the normal range...except platelets but they are up to 100...YAY!!! Except for these lump worries ...
Are the lumps right around or behind the nipple? If so, Nate had the same issue. For him it is from low testosterone and a side effect of meds, and it is when men start to form breast tissue. His doc looked at them back in probably december and said they're either that ir little cysts and said to put hot compresses on them 20 mins a day 3 times a day. For Nate, they were a little bit sore. He did the compresses for a while and they seemed to help, and then stopped and they appear to have just disappeared.
The armpit one would kind of throw me for a loop. Worrisome of course because we all know lymph nodeslive there. But, it could be a swollen gland for any random reasons, from infection to a pulled muscle.
Try to stay positive and keep us all posted. Until then, have him try the hot compresses on them. If they are in fact cysts, they should shrink a bit.
Okay, do you want the PITA funny story first? Or do you want the observation? Let's start with the story.
When we first moved to CO I got a really bad respiratory infection. They gave me a CT and found I had a "nose" that needed to be watched. So they thought. So I went through a couple of years of CTs on my chest until they established the "node" wasn't growing. So they let me off of that protocol.
In the meantime, I noticed a hard little kernel or something just under my right clavicle. When I finally got to Seattle and was able to talk with the folks there.I showed them that knot and they told me it had to be a cuff that remained when they pulled my Hickman.
It was then that 2 crashed into 2 and I realized that the stupid cuff was right where they'd been following that "node." I'd been through about three CTs and a good bit of incredibly stupid worry because the radiologist couldn't tell the difference between a cuff and a node.
That said, there was only one cuff left in me, not two. I'm hoping that what BJ found isn't any more consequential than my cuff is/was. Guess I'm just saying that sometimes things are more ridiculous than worrisome.
Please let us know what ya'll find out.
Thanks Lottie, Tex and Kelly!
So BJ met with transplant doc today who absolutely believes it is probably hormonal, but is going to let them biopsy anyways since the other Doc really wants to. He assured BJ that he will be vindicated since "lumps" are a big part of what he does! That will happen next Wed...
Tex, thanks for the story..BJ had a silly "mistake" happen today too...He mentioned that his face in upper cheek area has been puffy, swollen for. About 2 weeks and Dr K could see it...so he wanted CT done immed to rule out infection...BJ went for ct...no sooner pulled in driveway and nurse called all apologetic...they did a BRAIN scan (yes he still has one and it is normal) but he needs to go back up tom for sinus ct...uggg...an hour drive but way better than being inpatient!
Thanks for being here for us...as a teacher it was my Kdg. Students last day and a part of me was nervously waiting to hear what Dr K thought about lumps...last year's last day was when I heard he was in blast crisis...so I really am hoping next year finds us at 3 a charm...I managed to smile all day for my kiddos, but this rollercoaster does get old...doesn't it!!!!
(I am glad to still be riding it though ;-)
Funny story. Or not. Depends on how one looks at these things. I had to have a MRI on my head a few years before my AML dx. The first time they found "bright spots" which could be something or nothing so I had to have another one. In giving me the results of the next one my endo said, "They didn't find anything."
Which made rather disappointed. I'd always thought I had something in there. Be glad BJ's had it verified.
That's a terrible mistake to make. I can't believe they could screw up something so basic and simple.
Let us know how it goes.
BJ's biopsy was today...She took two biopsy's from the lumps on either side of chest...almost right under breast...did not take the one from under the arm, because if it would be lymphoma, it will show up with these two samples...Not the best day, as this Doc said, we have to rule out lymphoma and you know the risk for secondary cancers...yada yada yada....In one of the Lance Armstrong books, he has several people share their stories. The one young adult gets to the point where whe actually tells all the Docs to not give too much info...she had had enough...she said, I told them to tell me where I had to be and what I needed to do...I couldn't handle the might be.....scenario anymore....I do think BJ and I both are reaching that point...So we stay focused on BJ's transplant doc, Dr.K, who is a bit arrogant and rightfully so ...who told BJ last week that it is not lymphoma..."Lumps are my business and I think this is hormonal...but let them do the biopsy and I will be vindicated." We pray that he is right.
Then, another unpleasant appt today, before the biopsy was with the Sinus specialist. BJ has been having face-swelling in cheeks and under eyes and I mentioned. This Doc said he has infection that must be treated asap. So back on Bactrim and back on an accelerated steroid dosage 40 for 3 days then 30 for 3 and so on for the 12 days...if infection not gone in one month they will consider surgery which is not anything any of them (including us) wants!!!!!
Im glad for your support guys...I mean the rollercoaster metaphor describes it best doesn;t it...last month 6 month post MUD was amazing and this month it's ,....well you know~
.I mean the rollercoaster metaphor describes it best doesn;t it
Yep. I've never been through more ups and downs in succession than throughout that period of my life. It does get better, though.
I suspected the onc will be vindicated. Let us know when you get the results.
The whole face thing just sounds completely sucky.
I remember taking my youngest on a medium size roller coaster for the first time. As we were clacking up the first hill, he started screaming that we were going too high. Having been on the coaster before, I knew that the first hill was actually just a gradual curving drop so I kept trying to calm him but he was too focused on freaking out to listen to me.
So to use that metaphor (and you thought I was just telling a cute story), you're clacking up that hill and wondering what's on the other side. It's tough but you're strapped in already. Hold tight but don't freak out because it may be a gradual, easy drop. Just be prepared to ride the stupid thing. You're right - sometimes you want to know what's on the horizon and sometimes you want to be told what to do. Hang in there, we're thinking of both of you.
We got the dreaded call yesterday - the lumps are leukemia...We meet with Dr. today at 2:00, His blood was clean and 100 percent donor 2 weeks ago but they are going to do labs today at noon...Said probably do radiation....Don A sent a very useful message to us about tumorized CML...if Don is on this site...thank you so much...caringbridge doesn't have a feature that allows us to email back and forth....Anyways our home email is email@example.com, so Don if you see this, please email us...and know how you gave last night a glimmer of hope as we tried to process this latest setback....Will update after Dr. visit...
Wasn't expecting this. I'm sorry to learn that it's back. The good news is that BJ and the rest of you know how to beat this crap. You've just got to do it again.
I wish I understood more about how a blood cancer turns into lumps that can cause problems. But I know a lot of folks have whipped this, most recently Kelly.
I expect you'll keep us informed. Please know I'm rooting for ya'll.
Update on BJ-
It's Thurs 1130 and its been a rollercoaster 2 days....
Yesterdays labs showed still 100 percent donor and all normal counts...
CML tumors in both breasts extremely rare...
just learned this morning that yesterdays ultrasound showed fluid around lung...waiting for biopsy of that now...to rule out leukemia...ugg but no additional lumps thank God....
Sounds rough. I wish it weren't so.
I had no idea that CML could form into sarcoma. Always a learning experience, though I'd just as soon never have known this.
Tell that lad of yours that we're all rooting and pulling for him. And that I told him to kick some ass again.
I'm so sorry to hear this. I relapsed outside the marrow also. Mine was a chloroma around my small intestine. My blood was fine but the folks in Seattle said that if we relapse outside the marrow, it will eventually get into the marrow if it's not treated. Since they removed the chloroma completely, I was hoping that I was clear but after heaing their comment, the chemo made sense.
When it's outside the marrow and the marrow is clean, it's extremely rare. I'm wondering if in my case and in his that it's a sign that it was found early and therefore a better situation.
It's devestating when this happens but try to wrap your minds around putting up the same fight. Cancer doesn't play by the rules so make your own rules to fight it.
We're here for both of you.