June 2011 A/C & T Groupies Unite!

pebee

Good luck Rose.....

Ralsper

I wish you the best Rose!

Southamptonmom

Spent last 3 days in ICU with an arterial bleed, emergency surgery, blood transfusions. More later.

LuvRVing

OMG Rose, no!!!  How horrible for you!  Sending hugs and healing to you.

kks_rd

((((((((Rose))))))))  My heart goes out to you!!

cider8

Prayers and hugs for you Rose!  

pebee

prayers for a speedy recovery Rose.....

Ralsper

You will be fine Rose... We are praying for your recovery

Ralsper

Hi everyone. I met with the RO and, even though, I had mastectomy, I will have to have radiation. My margins are clear, but my cancer is really aggressive and "I am too young",  so the chances of recurrence are really high. Well, can someone explain me how come I am cancer free ...  Well, there is always the possibility that it has spread and..... WTF???? Am I or not cancer free? Nobody seems to know for sure.

Anyway, apart from been extremely bitchy, the annoying lyphedema, not have fully recovered the full use of my arm and gained 20 pounds, I'm not having any other post Chemo affects. The nurse yesterday said I doing fantastic. Nearly every other lady by the time they get to my stage (4 x AC and 9 Taxols) are having heaps of issues ranging from fatigue to numbness to rashes.  Me ... I'm fine, but fat... grrrrrr...

Southamptonmom

Ralston, I am fat, too, and you can add almost 3 liters of blood loss in my tissue with third spacing of fluid (edema all over the body). Having almost died, I can truly say that I'm on the way back from hell. Out of ICU tonight, but woke up with unbearable pain. After pressing the blood out from under my chest, the doc discontinued my pain pump, not realizing how much pain medicine I am able to take. Nurses here are wonderful.

cider8

Ralston, you sound a lot like me.  I had 1 positive node, stage 2a, clean margins from BMX.  I told my RO (and MO!) that I didn't want radiation.  Though I would do it if I had to.  She listened to me and really broke it down, had my pathology reviewed for a few little questions, and ultimately determined that I wouldn't benefit.  

And I'm fat!  But I started out that way.

Rose, I'm SO sorry to hear what I tough time you're having.  

I'm starting to get ready for surgery again in Dec.  I'm having a Stage 2 DIEP; basically just cleaning up the reconstruction.  I go out of town for it and I love my Dr and entire staff! 

kks_rd

Hi friends, hope you are all doing well these days.  Today was a big day!  I had a follow-up with my MO which was relatively unremarkable, then my first meeting with the RO today, and tomorrow is my re-excision surgery.  Looks like if I get a good path report (including clean margins) after tomorrow's surgery, I could start rads by mid-December and be done by February.

The MO spent a lot of time talking about long-term follow-up and the "transition to survivorship."  She was telling me that it's not uncommon for women to feel kinda blue when all treatment is done.  And the anxiety about recurrence never really goes away.....

HUGS!  And how is everyone?

tldrose

what is the second stage diep surgery like? I'm scheduled Dec 2nd and am excited and nervous~ Im so glad to get my port taken out, but nervous about another surgery..

kks_rd I agree with the feeling blue after all the treatments are done..I guess things have snowballed and caught up to me with everything that has happened in the last six months.. I just have to keep on going and work through it somehow ~ I don't think any of us who have gone through what we've gone through will NOT think about recurrence~ I'm hoping I can deal with that..its a scary prospect for sure and pray we all make it

Southamptonmom

I think that while undergoing treatment, there's really no time to grieve what we've been through. We take all our energy thinking about what to ask, how we feel, scheduling appointments and tests, how to heal the never-ending SEs... I still have raditation coming up and Herceptin infusions until August. I'm just tired of being sick and tired. Sent hubby yo work the past 2 days. He drops the kids off at school, and then he's home in time to get them from afterschool activities.

My nails are lifting from the nail beds. Has anyone had this happen??? My thumb nail particulary hurts really bad, and everytime I wash my hands, water remains under the nail. I wish I could pull the friggin thing off!

I already want a scan. I panicked when my pathology came back. After all the chemo and sickness, I still had BC in the right breast. I started thinking about the nodes along the chest wall that they can't remove. I feel doomed.

LuvRVing

Rose {{{{hugs}}}}  You've had more than your share of SEs, hope you get a break soon.  I understand about wanting the scan.  I had mammary node involvement, too, and it was such a relief to know that the PET showed they were clear.  Will they do one after radiation?  I'm sure rads will zap anything that's left.  According to my RO, it's essentially as effective as surgery.  And yes, I've heard of the nail problems you describe.  I haven't experienced it, although mine are thin and breaking more easily.  The lifting is a painful problem, so sorry you are having to deal with this on top of everything else.

Speaking of rads, I saw my RO yesterday and I go for my planning session tomorrow.  I will start rads the Tuesday after Thanksgiving.  By my calculation, I will finish around January 9th.  I will have 30 treatments including boosts to my mastectomy scar.  The holidays will cause a few days off, which will drag out the endpoint.  Not looking forward to the 3-4 hour daily round trip to Boston, but I know it's what we have to do.  The RO at Dana Farber is one of the best in the country and he has methods to protect my heart, lung and thyroid so we have to go with his methodology. Good thing my DH's company is so accommodating. And business slows down a bit during the holidays so hopefully it won't be a problem.

Kat - good luck with your path report!

Tldrose - there is a great discussion on DIEP - I think it's called DIEP2011.  You should check it out, I'm sure you'll learn all about phase 2 and what to expect.

As for feeling blue, I haven't experienced that yet.  Maybe it's because I still have rads and then I know that reconstruction is in my future so I don't feel anywhere near "done" just yet.  Now, I admit to being tired of treatment, scans, exams, blah blah blah...  But then I've been on this journey for 18 months, pretty much non-stop. 

Wishing everyone a great day,

Michelle

Southamptonmom

Michelle, I can't imagine having to drive that far everyday. I hope the traffic fairies keep things moving for you. Thanks for the hugs. Feel like I could use a hundred. PT coming today to get my arms back in shape.

pebee

Michelle - can't you stay in the city?  I was from Boston long time ago, and I thought that there were some places to stay if you were getting treatment?

I start rads the Tuesday after Thanksgiving - they did my planning session yesterday.  I now have 5 brand new tatoos.  I wish that I had the chance to get tatoos for other reasons.

I hope everyone has a great holiday - and yes, now we need to start working towards the rest of our life. 

mtnbiker

southampton,

i've been newly dx with triple neg ,metaplastic , so there is study i have been looking into and one of the hundred side effects are nails lifting. the chemo is Nab-paclitaxel, is that your part of your treatment. sooo sorry to hear how horrible you feel!

Southamptonmom

I was on Abraxane which I believe is a nab-paclitaxel. Is there are treatment for the nails or anything I can do to stop the pain other than narcs?

mtnbiker

iam sorry, none that I know of...:( this is all so new to me I dont know if I am coming or going

LuvRVing

Pebee - there is a Hope Lodge at Dana Farber. DH and I have talked about it, and we may ask to stay if we know there will be bad weather that would prevent us from driving in or getting home.  To qualify you have to be more than 40 miles away, we are 42.  But I am sure you would agree that sleeping in your own bed is always preferable. We have some friends who live just south of the city and we could also stay with them from time to time.    And I'll be sporting those tattoos tomorrow afternoon, not one bit happy about that.  I've gone 61 years without a tattoo, not at all excited about getting one now, let alone five. 

Rose - Lago had problems with nails and saw a podiatrist.  You might PM her for advice. 

Southamptonmom

Thank you Michelle, I did. Although my toenails are ugly and detaching, they don't hurt. My thumb does, and it's on the lymph dissection side...

kks_rd

Hi everyone!  Surgery yesterday went as well as could be expected.  I am resting comfortably today.  My BS said I likely won't get the path back until after Thanksgiving because of the holiday.  This is a bummer because I was hoping to return to work on Monday the 28th.  I will instead try to get my f/u appointment for that day and maybe return sometime later in the week.

Michelle, I don't envy that drive.  But of course you have excellent care at DF!  Hope you're tracking your mileage among the medical expenses for tax purposes.  I am interested to hear how your sim went today.  I pretty much insisted the RO consider henna tats and she agreed to explore the option with the techs.  We even wrote it into my informed consent.  Her concern is that without the permanent tats, nobody will know where I was irradiated if recurrence should come back to bite me.  My question is what difference would it make?  It's whole breast irradiation so I figure pretty much all of my right side would be off-limits in the future.  (Maybe I should post that question in one of the rads threads. Sorry to get off on a tangent.)

I also haven't had much of the blues.  Every so often I have tough days but indeed, I still feel far enough from the finish line that I'm in "keep chugging along" mode.  It's impossible to have truly bad days with all the love and support I have in my life.  Yet there are few people who truly understand - I am so grateful to be able to come here for that!

(((((Rose))))), I also had problems with the nails lifting.  My MO said there's little to be done other than to protect them as much as possible (when it was looking especially precarious, I wrapped a few with tape or a more innocent-looking bandaid).  I actually lost two toenails - it was a while back and they are growing back nicely - three more still look iffy.  Haven't lost any fingernails though, thank goodness.  I agree it's strange as hell to feel the water whooshing under the fingernails when washing hands or whatever.  I would usually give each nail a light squeeze after washing to squish the excess water out.  MO also recommended soaking in Domeboro's solution to keep the "funk" under the nails to a minimum.

For me, the nail pain was at its worst while I was having the worst of the bone pain, and I was on narcs at the time.  I've been tolerating the residual discomfort, sounds like you are in much more pain than I am.  If it persists, I would definitely ask doc about what else can be done.

p.s. the nails that are damaged are very brittle and break/splinter off easily.  I have been trying to keep them painted to reinforce them.  It also helps keep me from obsessing about them!  Some are very short and while they look awful in my opinion, I am seeing signs of regrowth.  It is so hard to be patient!  

LuvRVing

Kat - henna tattoos are a great idea.  Will they last, though?  They are starting to look at re-irradiation in some cases, even those who have had full-breast rads.  I guess they can give you up to 100gy's or thereabouts.  I think the standard treatment is around 54, so theoretically you could get it again.  Of course, like me, there is risk of damage including spontaneous rib fractures.  But it's not like I have much of a choice.   Glad to hear you are resting comfortably after surgery.

My nails are not lifting but they are very weak and brittle.  I'm keeping mine short and trying to moisturize regularly.  It doesn't help that it's getting cold and the air in the house is dry. 

kks_rd

Apparently they last about six weeks - just long enough although one touch-up might be needed.  Got the idea from lurking on on the Sept rads thread   I will do a little more research on whether I would ever be able to have rads on that side again... it would make a difference with regard to deciding on temp or perm tats... thanks for putting some numbers out there to get me started.

Agree moisturization is essential for our sad little nails!

mtnbiker

Hi Ladies,

does anyone ride a bike while having a port in place..? Does it bother you? any sugggestions !!

happy turkey day to you and yours!

LuvRVing

Mtnbiker - I'm not a bikerider, but I think I could have ridden with my port.  It was very small and didn't bother me at all.  I think you should just give it a try and see how you feel. 

LuvRVing

Oh by the way...no henna tattoos for me, they didn't have any henna.  I have six tiny dots, they really are small.  There's only one that anyone would ever see, and it's only if I wear something with a v-neck.  Not looking forward to starting rads next week, but SO looking forward to being done with treatment.

I hope you all had a wonderful Thanksgiving and were able to enjoy every single bite!  I ate more than I've eaten in months.  Everything tasted good!

Southamptonmom

Happy Thanksgiving!!!

I am having trouble with my port. It hurts all the time, and trying to do the stretches and exercise post BMX is crazy.

kks_rd

Michelle, do they do the tattoos at the simulation?  Mine is scheduled for Tuesday (assuminig a good path report on Monday); perhaps it would be worthwhile for me to pick some up.  My RO is on the fence about it but said she would defer to the techs about whether it's OK.

I had a great Thanksgiving!  Didn't overdo it and enjoyed being with the family.  The only bummer of the day was I finally lost two toenails that were wrecked by the chemo.  I've known it was coming but it was still kind of sad.

So sorry to hear about these port issues!  I don't have one myself but it seems like it should not be a big deal to ride a bike with one.  I've been jogging with sutures although it requires doubling up on the sports bra.  So mtnbiker, you might want to consider some 'reinforcement.'  There is a "Fitness and Getting Back Into Shape" section in this forum and you might want to pose the question to some of those ladies.

Hugs to all!!