Chemo Starting Sep 09

vickilynn

I'm having swelling along the scar of my mast.  It's not painful but I had to find a larger sized bra because it was quite uncomfortable!  I was reading somewhere that lymphedema can go into the chest - not just the arm.  Anyone else have this? 

Neece - can you tell us a little about the lymph massage?  Is it right over the area where the lymph nodes were removed?   Hope your first day back to work is a good one!!

By the time you all read this it will be late - but Happy Valentine's Day from me, too.

Vickilynn

chinablue

Oh Vicklynn.  Are there any lymphadema doctors in your area?  I would suggest asking your onc, but I know my onc wouldn't know what to do.  Maybe your internist can help.  I don't think it should be ignored.  Hang in there.

I thought I would share a crazy thing that was said to me today.

I had to cancel a hotel reservation due to snow.  As it happens, the reservation deposit can't be refunded, but you can change the date.   So, I was speaking with the reservation person.  She asked if I was celebrating anything because I opted for premium package.  I told her I was celebrating the end of chemo and preceded to request a cancellation.  I asked her to change the date to March.  She said, " I hope you can survive that long."

OMG! 

msmpatty

China - OMG indeed!   Was she trying to be funny or is she just an insensitive idiot?   Sorry your celebration had to be postponed.

VickiLynn - I read that lymphedema can occur in the breast.  You might want to get your swelling checked out.  There is even a special compression bra for this problem.   You can read about it at http://bellisse.com

Does/did anyone else have a "bolus" for rads?   I'm getting one.   It is some kind of rubbery device that is put over the affected part of the breast to enhance the effects of the rads there.   If it works I won't have to have the boosts at the end.   I wonder how they tell if it works? 

Patty   

Binney4

Hi, vickilynn,

Just wanted to drop in here and mention some ways to get evaluation and help with the swelling you're experiencing.

A well-trained lymphedema therapist would be the one to evaluate the swelling and tell you whether it's lymphedema and, if so, how to control it. You need a referral from any doctor on your team. Here's a page about finding a well-trained lymphedema therapist near you -- be sure to ask before you go how much experience they have with truncal lymphedema, as not all do.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Here's a page about truncal lymphedema. At the bottom of the page you'll find some cami, bra, shaper, and breast band options to help you control it.
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

The massage for lymphedema is not something you can learn without help and supervision from a therapist, because the proper direction, order, pressure, and hand movements are crucial. The full self-massage begins by "opening" the nodes in the neck, axilla and groin, then very gently moving the lymph fluid toward the nodes in a specific order. This is all complicated by scars and other individual issues that are best evaluated by a professional. Sometimes our doctors are slow to suggest this kind of help, but lymphedema is staged just like breast cancer is, and left untreated it progresses to fibrosic development, limitations of strenght and range of motion, and permanent fat deposition under the skin. Untreated lymphedema is also a very high risk for serious systemic infection.

On the other hand, early treatment means quicker relief and easier control, as well as being your best way of preventing spread or progression. So...sooner's better!

Hope you link up with a great therapist and soon have everything in control. Be well!
Binney

jadams1264

Happy President's Day (since I missed Valentine's)...had 3rd radiation txt today, nothing to it.  Also had checkup with onc. doctor and have a prescription for Femara (tomoxifin for those of us who are post menopause).  I am off to Atlanta next week for training for my new job so I'm not starting my rx until I get back in case of major hot flashes and mood swings!  Also, am going to miss a whole week of radiation but doctor's ok'd.

Anita - don't be concerned about radiation.  Nothing to it!  Hang in there, your hair will start growing shortly then you can join the rest of us fussing about patches, color, etc.  Mine is getting thick but doesn't seem to be growing a whole lot.  And my white fuzz now has some ugly color in it - like Vickilynn described, a mohawk!

ChinaBlue - I also have the "blackhead" tatoos and that's exactly what they look like!  Yes, the reservation person was a complete idiot.  Was she at the hotel or some reservation center.  If she was at the hotel, I'd speak w/the manager when you do go, maybe he/she will comp your room for a night.  Talk about ignorant!

BarbAnne - when I first finished chemo my eyes were watering like crazy, then the back of my legs (calves) hurt like crazy, then I had shortness of breath.  I was the poster child for "Symptom of the Week".  This week (so far) nothing, and while I'm not 100% I'm feeling better all the time - so will you!  

Patty - isn't it amazing how different the all the doctors are?  I was told no lotions, if I need one they will prescribe something at that time.  I had read on one of the other threads about all the different lotions and was prepared to buy some, but....  I don't think Melinda used lotions either.  Guess it's just the doctor.

Melinda - almost done.  I only have 30 more to go!  I am ready for our virtual celebration and am thinking of buying a new outfit 2 sizes smaller than I'm wearing now - since it is virtual I can be smaller - ha!  You are so brave to go out with your new short "do".  While I want to be wig free, I'm going to have to have enough hair to cover my ears and that will probably take a while.

Vickilynn - so sorry you are having this swelling.  Sounds like you got a lot of good advice.  Please go see a doctor right away!  How is the cafe coming?  When are you opening for business or are you already open?  How is your side doing?

Binney - thanks for all the wonderful information!  Please come back and join us anytime!

Hope everyone is well and having a good day.  Take care!

Thoughts and prayers are with you!

Jane

vickilynn

Thanks so much for the websites and advice and encouragement to get this taken care of.  I went to my regular dr. this morning and she's starting me out with a PetScan and listened carefully to what I was saying.  Her mother had bc and she takes me seriously.  I know she will get me going.  Meanwhile I will check the websites and push for an expert opinion.  THANKS! vickilynn

We are hoping to open the Lazy Dawg Cafe March 1 but I'm not much help with preparing the place - still having pains in my left side too.  What a mess.

That rude receptionist even topped the conversation I had with the woman who runs the neighborhood store this afternoon.  After telling her I had cancer, she told me (over the next 15 minutes) what a horrible death her brother had over 7 months while he had cancer... and what a terrible inconvenience it all was for her and everybody... SIGH

vickilynn

I just read through the websites suggested re: lymphedema.  Really helpful!  Thank you Patty and Binney for sharing.  Vickilynn

Neece

hi Vickilynn, can I just echo Binney's encouragement to get your swelling checked out. After a week and a half of daily lymphatic massage by DH (as instructed by lymphedema therapist) and daily compression bandaging - yuk - my swelling and fluid in my arm and hand has reduced by 50% !! Even my therapist was amazed. I have just today recieved a new compression sleeve and glove so will be trying that for a couple of days to ensure the swelling doesn't return - if all goes well I might not have to return to bandaging and can just wear the sleeve (unless I have a flare up). The swelling had been increasing over the Christmas /january period and i reallly think if I had left it any longer it would have been much harder to treat.

SO good luck Vickilynn finding someone with expertise to help you get yours under control. I really hope you have a good result.

BTW  -  re your woman in the store with the tragic story to tell you about cancer?I just recently read in  DrMarisa Weis's book "Living Well Beyond Breast Cancer" (latest edition out now - a great book!!!) the PERFECT antidote to these situations. When someone begins to launch into a "cancer story" interrupt them straightaway and say "I only listen to stories with happy endings". I think this is a terrific way to stop those terrible, tragic anecdotes that people do seem to love to tell cancer sufferers!!

Jane glad you were able to work rads around your new job training. Hope it goes well.

I started my new job yesterday! Very gentle easing into it for 2 weeks then the real deal starts. So far so good! No major meltdowns!

Scoobydoo

Vickilynn- I sure hope a specialist sees you soon to take care of whatever this is that is plagueing you.  I am sorry you have to go through this on top of all the other mess we all have to go through.  Why do people do what that lady did to you?  That is so selfish and uncaring.  Like my mom used to say, if you cant say something nice dont say anything at all.  You are in my prayers for complete healing. 

Neece - That is so awesome that you have seen a 50% reduction in swelling.  I sure hope you can move to the compression sleeve.  I hate cancer!!!  Even after we go through everything, we still have to go through some more.  Glad that you had a positive experience at your new job. 

Today is my first day with rads.  Feeling pretty good about it.  Had my simulationo yesterday and received 5 tatoos.  They really were not very painful.  Way easier than I thought. 

Wishing all the ladies a wonderful day. 

Anita

msmpatty

VickiLynn - Good heavens!   What are these people thinking...or perhaps they are just NOT thinking.  When I called my dentist shortly after starting chemo to cancel my regular cleaning appointment she gave me some tips on caring for my teeth and gums during chemo and then launched into a discussion about how chemo can cause "jaw death".  Not exactly what I needed to hear!   To her credit, she stopped herself mid- jaw death dissertation and has called to check up on me a couple times over the past six months.  So I forgive her.

I'm sorry for those of you who are suffering the effects of the lymphodema.  But it sounds like that with proper treatment it can be managed.   If I had really long arms I'd help you out with a long distance massage.  But for now...just my positive thoughts!

Patty

hbowser

Good evening ladies,

Praise the Lord, I got great news yesterday; my surgeon called with the final pathology: there was no sign of cancer; they couldn't even find evidence of the original tumor! He said that the neo-adjuvant chemo was 100% success.  This means no radiation.

I have a follow-up with my oncologist next Tuesday. I think we will be discussing the next phase of the treatment, which would be tamoxifen.

I went back to work yesterday and it went fine. Later on in the evening I was a little sorer than before, but I think that means I am using my right arm more so that is good.

Funny thing is my left jaw is hurting; not all the time. I think that I am clinching my jaw or grinding my teeth in my sleep (I used to do that, but I thought I had stopped). Then, Patty, I read your post about jaw death and now feeling some anxiety.  I guess if it doesn't get better soon, I make an appointment with a dentist.  It is time to see him since I am done with chemo.

It sounds like for those who are doing radiation that it is going well.  I hope it continues to be.

Vickilynn - Praying that your swelling is getting better.  Honestly, I don't understand why people share stories like that; it shows lack of sensitivity and lack of thought (I am trying to say it nicely).  Also, Congratulations on your new cafe; that sounds like a great venture.  My husband has always dreamed of opening a coffee shop (he is a coffee nut; roasts his own coffee)!  Maybe someday his dream will come true.

Neece - That is a great comeback.  I will have to remember it.  Wonderful news about your swelling going down.

Jane - Have fun in Atlanta.  A new job, that sounds exciting.  Is it in the same field as you've been doing before or is this something new?

I hope everyone is feeling better everyday.  Take good care!

Holly

msmpatty

Holly... Excellent news!   Nothing better than 100% effective!  Hooray for no radiation!   Now here's a weird thing...I'm getting pain in my jaw too.  Sometimes it is on one side, sometimes the other.  And like yours it comes and goes.  I googled jaw pain and there are about 60 different causes, so I'm thinking jaw death is an unlikely cause...grinding or clenching is probably more likely.   Sounds like we both need to see the dentist!

Patty

DiDiT

Holly - Congrats on NO RADS!!   

OK RAD Girls...so many recommendations regarding skin...I had already purchased a big tub of aquaphor (It's great for 'dry skin' I'm using it on my seriously chapped lips)  But at mapping, nurse told me not to buy another thing - they would give me whatever they recommended as I needed it.  In the beginning, if irritation occurs, they'll give me something to use with plain corn starch.   

I read the research article re: red wine reducing skin toxicity due to radiation.  I'm not a wine drinker, but I'm planning on one glass of red wine (6 oz) daily while getting tx.

Also disappointed as I wanted to start swimming this week - BUT rad techs nearly flipped at the suggestion as I have what seems to be a treasure map drawn over my entire torso and they want the marks to remain (for two weeks - are they crazy?)    I considered tattoos, but said I'd have 9 and that some of the lines would still need to remain...

I was expecting a few dots, those I could reinforce, but, this is a bit much...I'm having a difficult time finding shirts high enough on my chest to cover markings - bright blue markings!

I shouldn't complain, I know it's important for them to line me up just right - since there are so many beams targeted to 'the target',  - But I must confess - I left this appointment feeling mildly depressed...I thought  I was ready for  'normal life' - only to feel really 'abnormal' and restricted again:( or should I say,, still...

I am reassured however, that I've gone to the best place for treatment...the rad onc at my cancer center didn't have any idea how to treat with te's and when I asked him if I'd be receiving periodic CT scans to make sure nothing had changed during tx to ensure they were still targeting the right target he replied that there was no need for that.

The girls here told me that as I lay on the table for treatment, I'll have a CT scan each visit before any zapping.  It's the same machine!  SO,  I guess I can put up with a few more weeks of 'this' -

Oh, and I'm getting that rubbery thing too over radiated breast - they said it 'tricks the machine' , I'm not sure of the true rationale, I was kinda numb by the time they did that part - literally -   I even had to use my right hand to lift my left out of the overhead position, was after all that time, kinda stuck! 

I'll get 28 treatments - no boosts.  Start next Thursday, Feb 25th - that's all I know for now -  

Love to you all!!

I'm frantically trying to get caught up with 'life' of course mostly work, before I start making this drive to tx daily....I'll try to keep up with you all in the mean time:)

Di Di  

msmpatty

DiDit - Yikes...so many tats and lines!   Guess they know what's best, right?   I'm getting the "bolus" (rubbery thing) too.  It apparently helps concentrate the rads.  Which makes one wonder whether it won't also concentrate the burn?   But my rad Onc said the bolus can make the boosts unnecessary, so that's a positive.   Here's my idea:   Although rads are probably not going to be a barrel of fun, after 24-WEEKS of chemo (I did the same regimen you did), 28-DAYS of rads can't be that bad.  Can it?

Patty

jadams1264

Hello SOSisters... hope everyone is doing well!  Over the hump day!

Vickilynn - your grand opening is right around the corner and I bet you are doing a lot more than you should, but it does sound exciting.  Shame on the lady at the neighborhood store, some people just lack common sense!

Neece - so glad your swelling has gone down, sounds like you are doing everything right.  I know you are relieved that work is going so well and you have time to ease back into it.  It's always an anxious time doing something new.

Anita - glad the tatooing went well.  When do you actually start your first txt?  I had #5 today, so far, so good!

Patty - the txts actually go pretty fast.  Hard to believe I only have 23 left plus 5 boasts.  The problem with looking up any kind of pain is that there are just too many things it could be.  Have you called your doctor?

Holly - CONGRATULATIONS!!  Wonderful news...and no rads you lucky girl.  The new job is actually to replace my old job which was abolished with the latest round of company cutbacks.  This job is a promotion but also more work.  I am hoping I will enjoy the new challenge and am able to hire really good people to be on my team.  Job is a combination of administrative, human resource and training.  

DiDi - sounds like your mapping was a lot more extensive than mine.  I only had a few lines and 3 tatoos.  Bummer that you cannot swim.  I was told the same thing about the lotions, don't buy any, if I need them they will give me a rx.  My CT scan was also done with the same machine.  

To all who haven't posted, hope you are well and enjoying every day!  Take care.

Thoughts and prayers are with you.

Jane

vickilynn

I'm sorry so many of you are having rads.  My prayers are with you.

I'm having a bone scan tomorrow... the painful rib and swelling is causing concern.  My husband is really nervous about this one.  I'm sure it will be awhile before I get any answers, but it would be nice to have an answer - either way!

msmpatty

Vickilynn - Best of luck to you tomorrow and keeping my fingers crossed that the problem is something that can be quickly fixed.   Didn't it start when you were remodeling the cafe?   

Jane - Congrats on the promotion!   It is so great to see everyone moving beyond BC...promotion for you, new job for Neece, new venture for Vickilynn.   I better get busy!   Beginning to feel like a slug here!   Thanks for the encouragement on the rads.   I have a 5 minute appointment tomorrow so they can check everything out...then start Monday morning.

Hope everyone else is doing great!

Patty

DiDiT

Yes Patty - I noticed we had about the same treatment regime...looks like I may get arimidex instead of Tamoxifin - had blood test that showed be in high range of 'menopause' - onc said she'd repeat blood test before I begin that tx - that it could change.  I'm ready for rads - and ready to get over with it!  Maybe I'll consider it like a tanning salon visit (probably shorter)  

Here's to minimal se's for all - I'll toast to that daily while I'm drinking my glass of red wine - 

Vicki - sorry about your continued pain... prayers and positive thoughts on the scan!

Jane - You, Anita,and Patty are ahead of me on the rads, I'll be looking to you for se info!!!   Congrats on your promotion!!!

Neece - congrats on your new job as well -  Oh, new lives, Enjoy every minute!!

Di Di 

msmpatty

DiDi - LOL.  Tanning salon indeed!

Patty

Scoobydoo

Jane - today will be my 3rd txt.  So not too far behind you.  How are things going?  Do you feel any differences in your breast?

Di Di - When do you think you will be starting rads?  If I missed it in an earlier post I apologize. 

So far so good.  I am putting on the aquaphor to help keep my skin healthy and to relieve some of the friction.  It is working so far.

2 rads down, 33 to go.

Anita

Melinda-Tma3

Hi SOSisters!  I AM OFFICIALLY DONE!  DID YOU HEAR IT?? DONE!  Next stop....port removal....don't meet with my BC surgeon til March 22 though....so a little over a month.  So far the rads haven't affected me much.  Just a ping or a little burning here and there.  

So the path is paved....my light has shined through.....your lights are shining on me......I'll be waiting for each of you!  I can't thank each of you enough....you have helped my through the toughest days of my life... I am crying...I didn't think this day would ever come....

A huge, huge bear hug,

Melinda    

jadams1264

Hello SOSisters... 6 down and 27 to go!  So far, so good. 

Vickilynn - saying a prayer for you.  So sorry you are having pain and swelling.  Hope you don't have to wait very long for your results!  Sure all will be well.

Patty - how did your appointment go today?  I was ready to go ahead and get started, sooner starter, sooner finished and then just a pill!

DiDi - you are right, the tanning salon would take longer.  It takes me longer to undress and dress than it does for the actual txt.  The only complaint I have is my arm is sore from being above my head.

Anita - I have had a few sharp jabs after txt, the dr. says that is normal.  He also said that after the first couple of weeks my breast will darken (like a tan) and I may be tired.  However, so far nothing to report.  Since I am going to miss next week, you will pass me by and be done before I am!

Melinda - YEAH!  WOW!  WHOPPEE!  What in the world will you do with yourself?  No rads, no chemo, one little pill.  Oh how we all envy you the freedom on being cancer free and all the treatments that go along with it!  

To the rest of my sisters, hope you are well and just busy.  Let us know how you are doing.  Take care.

Thoughts and prayers are with you.

Jane

msmpatty

Jane...thanks for remembering that I had my port film appointment today.   I didn't remember it.  Yep, totally spaced it out.   How bad is THAT?   They were very nice about it and rescheduled me for tommorrow so I can get started on the TXs on Monday. 

Congrats Melinda!  And it sounds like you made it through with limited SEs.  Good for you!

It is so great to see everybody working their way through rads.   

Patty

vickilynn

tip, tap, tappity, tip, tap, twirl, tippity tap, tap, tap    (Me doing the HAPPY DANCE for Melinda!)

jadams1264

Hello SOSisters... so I went and had rad txt #7 today.  Then this afternoon get a call from the rad PA who was very concerned about my missing radiation next week and could I cancel my trip.  I told him no and he said "oh well, we'll do what we can".  So now I'm ticked - just what does that mean?  I wasn't thinking fast enough to ask the question.  So now my whole week gone I can worry that I have screwed up my radiation!  So how is your day?

Sorry just needed to vent.  TGIF!  Check in later.

Jane

vickilynn

Jane... don't you love it?  I hope you have a great week away any way!!!

BarbAnne41

Hi all!

I am really behind on responding to post but I just wanted to quickly say..

MELINDA WOO HOO!!!!! I am so very happy for you girl!!

Patty I think my brain may have ran away with yours.

Vicki-hope you are feeling better and your rib is on the mend?

Jane-Those people gosh they drive ya nuts don't they? If the men in my rads round could go out of town so can you darn it! You will be fine. Good luck and congrats on your promotion.

Holly, I hope you are well and everything is on the mend nicely, congrats on coming through everything so well. I think the Death Jaw ting is only a factor when you are on the stuff for bone, either bone mets or other trials, not every chemo, and I agree with everyone else. we do clench a lot without realizing it, very stressful!

My feet are still asleep, and my scans are next Tuesday, can't wait! To have them over and a clean bill of well whatever, clear scans that's all I want!

Much love and hugs to you all !

Barbara

msmpatty

Barbara -- I'm keeping my fingers and toes crossed that your scans are clean and your feet wake up soon.   I only had a minor problem with finger numbness and at 3 weeks PFC my fingers have returned to normal.  I'm still taking the B vitamins just in case.

Holly -- I did some more reading on the dreaded jaw death and, as Barbara says, it is more related to the bone meds and usually triggered by having a big dental procedure.   Which makes it even more curious as to why my dentist so readily mentioned it upon learning I was on chemo.

Jane -- Gosh, why can't these professionals get their stories straight?   I hope you have a great trip and I'm sure everything will be fine with the rads.

Here's to a great weekend....

Patty

Neece

Hello everyone,

Just finished a busy, happy, social weekend in which BC stuff was in the background - such a nice change. My arm is still a trouble but I now have a compression sleeve and am trialling that for a week and see if it makes much difference in terms of lymphedema swelling. It is certainly much easier and freer to where (not to mention that it doesn't make me look like I have just left the burns unit at hospital)

Melinda I am so happy for you. well done you! We are now Tamoxi-pals together. I am finding I am getting hot flashes and sweats, but other than that nothing much to complain about so far - I have been on it for just over a month.

Vickilynn PLEEEZE let us know as soon as you get your scan results. Will be thinking of you.

Holly great news on your path report - what a relief

DiDi I do understand what you mean about wanting to lead a 'normal' life again. I guess we all have to find a new definition of normal that works for each of us. And that will change, too, as we progress thru our remaining treatments and adjust to the demands of these. But it is so understandable to just want everything to be as it used to be before BC. I too love swimming and just got back to it this week after getting out of the dreaded bandages. It felt wonderful. I only have another month of it before I go in for my reconstruction and will need to take (another!!) break from the pool until I am healed up from that. But I just tell myself the pool will be there for me when I am ready again. BTW swimming is apparantly very good for lymphedema due to the pressure of the water against the skin and muscles and the movement of the arm..

I hope those doing rads have a good week ahead without too many dramas!

Week 2 of work for me starts tomorrow!

chinablue

I just got back from visiting my daughter at college.  My younger daughter and I flew out and surprised her.  Oh we had so much fun!  I did notice a huge banner in my daughter's dorm room that said "Save the Tatas."  It had a great big pink ribbon on it.  I did not ask her about it because I did not want to ruin the moment with bc.  I know she is volunteering for Relay for Life and other bc fund raisers.  What a dear.

Oh Melinda...HIP, HIP, HURRAY!  I am raising my virtual glass to you.  CHEERS!

I start rads tomorrow.  I was nervous until I read how well everyone is doing.  

I have lost seven of my finger nails and two of my toenails due to taxol.  My neuropathy is a bit better though.  I still have a huge cord running down my arm.  I just try to ignore it.  Overall, I am thinking much more clearly and have more energy.  I can even stay awake until 10:30.  Whoa, chemo really does a number on you.  

I wish everyone the best.