Calling all TNs

BernieEllen

Hello everyone, A/c no 4 just been postponed.  Have to have a port put in next week, veins no good.  Not looking forward to that.

MonikaV

Hi girls,

Just checking in.... I have been busy with my kids and getting ready to go back to work. Yay! Today I had my 3 months appt and so happy to report that I am still in remission. I feel blessed.

MBJ when are we going to have lunch again? Let me know.... 

Good night everyone. 

Anonymous

Headed off to Blowing Rock now with the horses. I'm so freaking tired from all the prep work! And yeah, I've been coughing too and started to have that little nagging thought in the back of my head. But, I've been doing a lot of dirty, dusty stuff of late, so probably just that.

Time to bathe horses, shower and hit the road. Will post some pics as able.

njbhwgirl

I am TN on my left side and IDC and DCIS on my right. I could not figure out how to put that in my profile information. Is anyone else who is TN also have a different type of cancer.

Funny, the BS could save my TN breast but not the other.. It was in two different quandrants. I opted for bilateral.. Anyone else have similar situation?

MBJ

Heidi:  You live a charmed life!  Sounds like a lot of work but so worth it.  I am sure it's just the dust and nothing to worry about!

Suze:  We must have posted at the same time and I missed your post about the SE's from radiation-ugh!  Just keep thinking how fun it is to have your gorgeous car driving with the wind in your hair.  Hopefully it will be done before you know it so you can enjoy the summer.  Hugs!

Monika:  So glad to hear you're doing well!  I would love to lunch again just don't know when.  Things are kind of hectic right now but when things slow down for the summer, we should definetly do lunch again!  Hugs!!!

tnbcRuth

Port insertion won't hurt and really won't be sore.  It'll be worth it.  Explore different locations for it...mine was right under my bra strap (any strap) and it always bothered me there.

MBJ

I never had a port and now wish I had because they no longer can find a vein on me that works. 

Kymn

I didnt have a port either and I cant stretch out my chemo arm fully . Kinda wish i had had the port but oh well too late now only one treatment left yeah.

so on the SE front I have a huge boil where my leg and my crotch area meet....cause we all know I havent had enough side effects yet....and it has no head so it cant be popped or drained. I know haveing a suppressed immune system can bring them on but dang it hurts and I have nothing to fight it with as I am in week two between treatments....any advice??????

katfinn

Kymn- That sounds terrible.  I hope someone has a way to help you.  I just get these red spots on my arms.  I believe it's sun damage that pops out during my first two chemo weeks.  It goes away by week # 3.

Painting - I love your work.  Good luck with the wedding.  I don't know too much about radiation yet but I hear it's not as bad as chemo?  I have to figure out what to where all through August since I can't wear a bra.  I'm hoping to find some sundresses with a little padding as I'll look super flat without a bra.  :-)

Ruth - I had something to say to you but I can't remember now?  Oh boy...

Teka

Kymn,

November 2010 my GYN removed a benign boil (cyst) in groin area that kept draining and closing off even with antibiotics, which was probably caused by AC+T chemo with Avastin.   Last week my BS removed another benign boil (cyst) from up under my (L) breast, which was probably caused by severe radiation burn.   I had 1 boil (cyst) in groin area that drained and went away, and now 1 boil (cyst) in panty line that I hope will finish draining and go bye-bye.   You should tell MO.   DON'T mess with home remedies.

Titan

OMG..boils HURT!  Tho..I have never heard of them as an se's from rads/chemo..Kymn..maybe you are a first!  I have a friend on the chemo April 2009 thread that had every se you could have...it wasn't funny at all but..she is doing kinda ok now...but still dealing with some issues..

We don't really want to face this but I guess we have too...chemo does cause SE'S..and sometimes they linger for a long long time....but seriously..as TN'S..do we have a choice?  Guess there really is no way to know for sure...who wants to volunteer to have no chemo as a TN and see what happens????...sucks..

Ok..here is the pep talk..yes chemo sucks, SE's suck....CANCER sucks...BUT if you can get through it..it does get better, really, really, really.

Heidi..there are alot of summer colds going around and you have been working around straw and dust...remember the 2 week rule...(and then freak out if you have too). Have fun with your horses in NC...I'm very jealous..

Kymn

Ok Teka, I will let him know, but I dont see him for another week . I really dont want to have to take more time off work to go in earlier and quite frankly I dont want to go to my regular doctors office as it is a petri dish for germs in there. I know I will call tomorrow to the cancer clinic lol dont know why I didnt think of that sooner...oh right chemo brain

Sugar77

Oh, I know about boils.  Ladies, remember when I had that thing under my armpit last November? That's when we started talking about that black salve stuff from Amish county. I ended up with antibiotics and used Epson salt compresses to make it come to a head, as well as tea tree oil. It's all healed now but it sure was painful and ugly.  I can sympathize.

I hope everyone's doing well.  I've been reading your posts but haven't had too much to add these past few days. 

dlcw

HI All- just checking in.  Had dose #2 of the Taxol today (doing the 12-weekly taxol first).  Feeling pretty good - zooming a bit from the steroids - it's almost midnight and I just started some laundry and am going to finish the dishes after I post this.  Kids had a swim meet tonight so we didn't get home until 9:45.  SE's from the Taxol are so far very minimal, but it's early and I know they can be cummulative so I will wait and see.  Going in to the office only 2 days a week now and am really enjoying the extra time with the kids now that school is out.  It's going to be a good summer!

It was nice to catch up on everyone's news.  Heidi's trip sounds like it will be great.  Suze's car sounds awesome - I grew up riding motorcycles and LOVE the wind in my hair. 

Kymm - that sounds so painful - hope you get some relief soon.

MonikaV - great news on the NED.  

Hope everyone is enjoying the summer and those of you in the midwest stay out harm's way with all that awful weather we keep seeing on the news.  Off to clean while the steroids last!

dlcw

Paintingmywaythru

Surgeon hadn't wanted me to work this week because of the 2 emergency surgeries for hematoma after lumpectomy but I did and now I have leg swelling and she says ot go to my PCP. HAs anyonehad this after lumpectomy. I took it easier yesterday and it went down with support hose but was back again at night...can oyu get lymphedema in your leg a after a lumpectomy?

Guess mine wasn't a typical simple procedure with te 2 emergency surgeries. Guess I need to learn to be bettter to myself and follow doctors orders.

Worrying my head away here waiting to callt he office when it opens.

Teka

 Paintingmywaythru,

Maybe your surgeon wants to rule out a blood clot if swelling in only one leg.  

Suze35

Waving at everyone!  I'm just lurking quietly, just having some blah days.

Painting - I think blood clot may be something to keep an eye on - when you are on chemo, you are more susceptible.  If you have any pain at all, head to the ER!

dlcw - I'm glad to hear that your SEs so far are good!  I found it pretty tolerable myself.

Kymn - ouch!  I don't have any advice, I hope it heals up soon!

Heidi - enjoy your trip!

Port - love mine.  I didn't so much at first, but now I barely notice it, and with more chemo to come, I'm very glad to have it.  I used to have the best veins, now, they struggle with my good arm.

Kymn

thanks for all the concern ladies, i have a doc appt this afternoon to get on some antibiotics i dont want to mess around as my last chemo is one week from today and i am not postponing it darn it.

suze35 sorry to hear you are having some blue days, i hate them so glad when they finallly pass sending you a big canadian hug

MBJ

Kymn:  So sorry to hear you are in pain and suffering!  I have never had a boil but I know that they can be extremely painful.  Hope it clears up soon so you can get done with your last chemo and move on!

Painter:  I agree-sudden swelling anywhere is a cause for concern!  Whay are we all trying to be super women by continuing to work when our dr's say not to?  Please, please take good care of yourself.  I don't know where you live, but there are usually many options for taking medical leave and during this trying time it would be wise to take advantage of it.  Big hugs and I hope it isn't anything serious.

TiffanyF4

Ok went for my 3 mth check up with my oncologist. He looks at me and says "ok let's see you had a PET scan last NOV" I interrupted and said "no I didn't" he says "yes you did you must be mistaken " hello I think I know what I've had scanned! He might see 100 patients a week but I'm my only patient and I would know if I had a PET scan! He finally went back and looked it up and it was OCT 09 that I had my first and only PET scan. So he then says "well we will schedule you for Nov. For your next one." So are any of you on any type of "scan" schedule?

TifJ

Tiffany- I wish I was. I have lots of little aches and pains (cough, rib pain and vision issues) and of course think everything is mets. I think it may be just 6 months past chemo hypochondria! I see my onc next Thurs. I would be surprised if he orders scans. I never had a PET- insurance denied it.

Tiffany C.

Summer38

No scan schedule for me either. Dr "doesn't want to expose me to unnecessary radiation", REALLY?????? Crazy right? Say's they will scan if I have any kind of symptoms that warrant it otherwise just tests my tumor markers every 3 months. Though last time he was nice enough to point out that TM's for us TN girls are usually pretty Unreliable - thanks!

mccrimmon324

TifJ - Hoping you start feeling better soon, I just wanted to ask if you knew why your insurance didn't cover the PETCT/scan?

TiffanyF4

TiffanyC I'm also curious why your insurance would deny coverage for a PET scan? Insurance companies like to play doctor!!!!! Gggrrr

TifJ

The PET was ordered for 2 days before I began chemo. They said they wouldn't approve it until after I started chemo, so my dr. ordered it after and they denied it again. We have never received a clear answer why. It has been a battle between my Dr. and Coventry ever since. I am going to bring it up again when I see Dr. next week.

Paintingmywaythru

Hi all,

Thanks for all the insight. I saw my PCP this AM and just to be sure, she sent me for scans of both my legs to r/o and problems. All clear there so, there isn't a reason  for my sweling, except that I may have done too muc, too soon- Working for myself and having had my husband unemployed for 22 months until April 25th...I felt I needed to get back to work for the income as with the cancer diagnosis we have to postpone selling our house and moving  to our summer home so I cna get treatment in Boston...I also felt like my clients needed their therapist back sicne i knew I was going to be doing a lot of juggling this summer with my duaghter wedding in 9 days now and with chemo.

Heidi- have fun

Kymn- feel better 

And  now I rest in bed until Monday on a no salt diet and will follow my doctors orders not to work more htan 3 hours a day next week if she says it is OK to return.....Oy! I can't folow the advice I would give anyone else.

 Has anyonehere gone to MGH for treatment? I am going Tuesday for a second opinion.

At least I think I can draw lying down! And my kitty is curled up with me!

MBJ

Painting:  Hope you are healed up soon!

Suze35

Painting - I did a second opinion at MGH, and had my surgeries there with Dr. Michelle Gadd. My oncologist is not at MGH. It was a bit of a long day - you will see a Medical Oncologist, a Breast Surgeon, and a Radiation Oncologist all in one day, then they meet and give you their plan of action. In my case, it wasn't any different than my MO. I would highly recommend Dr. Gadd for surgery, however. She isn't touchy feely, but she is an incredible surgeon, and if you need nodes removed, she is one of the best. I credit my great surgical outcomes to her skills.



Good luck! I'm glad you "only" have swelling. It sucks though.

bak94

My pet scan was initially denied also, but somehow the docs got it approved. This was when I was first diagnosed, i wonder if I will have the same issue when my doc wants to scan again. Not sure when that will be, as I am doing neoadjuvent. I did have a ct scan to see if the chemo was working after 3 treatments, and it is!

BernieEllen

my grandmothers cure for boils - make a think paste of white bread and boiling water, apply straight away in material like a hankerchief.  Leave overnight.  Repeat again in the morning.  The heat draws the boil out.  It works.