June 2007 Chemo

Hi Everyone,

I'm officially done with chemo!  Yahoo!  I took Bonnie's lead and brought in a cake for the staff.  They loved it.  I had an unbelieveable group of chemo nurses there.  It made it such a pleasant experience considering the circumstances.

Gracie, you lived in Italy!  What a wonderful experience that must have been.  I was there in 1979, backpacking for two months with a friend.  It was the time of my life.  This is trip will be a little different.  No sleeping bags or train stations to sleep in, hopefully.  I can't wait!

Terry, I'd love to get the link to the website of your local dragon boat team.  It might give me some ideas as we get our group started.  Also, did you decide not to do the Tamoxifen or Arimidex?  I think we are both ER-, slightly PR+.  My oncologist is leaning towards not giving me either.  He thinks the risks outweight the benefits.  What have you been told?

Debbie M., good luck with your scans.  I guess I won't be getting any until I get back from my trip.  Maybe it's better that way.   But I am anxious to get all the tests done and get this all behind me.

Dawn, good luck with your last few treatments.  I felt like the last ones were the hardest, mainly because I felt so close to the end, but it really wasn't over yet.  I guess I was overly anxious.  I hope it goes fast for you.  You'll be celebrating this Thanksgiving for sure!

Debbie K., so you are having rads after having a mastectomy?  I had a bilateral mastectomy and haven't been told to do rads, but now I'm wondering.   If you don't mind me asking, do you know the reason?  I've really wanted to be as aggressive as possible, and although rads don't sound like fun, if it will keep this monster from coming back, sign me up.

Garnetann, good luck tomorrow!  I will be thinking of you.  It is such a great feeling.  I'm still celebrating!

Denise, you mentioned tatoos.  The only tatoos I have read about are the ones I will need after my reconstruction is finished.  They tatoo the areola and then add the nipple.  It's kind of hard to imagine, so I haven't really researched it much.  One step at a time.  My exchange surgery for my implant is in January, so I think tatoos come a few months after that.  Quite a long process. 

Linda and Cyndi, thanks for the info on the lymphedema.  Loose fitting clothing is something I need all the time now due to the hot flashes, so I've got that covered!   And layers.  I get so cold and then so hot.  It's funny I had to ask my doctor about the lympedema.  I would think it would be standard procedure to mention it like your doctor did, Cyndi.

Hope everyone is doing well.  My best to you all.

xoxo

Kathleen

Cyndi - sure hope that UTI goes away for good this time!  we sure do heal more slowly during chemo.  I had mosquito bites in July that took FOREVER to heal and the skin is still pink!  As far as exercise goes, it really does make me feel better all day.  Some days I just can't get on the treadmill even though I know it makes me feel good.  Maybe you could try some stretches and a walk outside to get going.

Kathleen - congrats - I can see you doing the happy dance!  I can't wait to join the list of 2007 Junies that are done with chemo!  I remember being VERY anxious my last A/C back in August - my DH Spencer held my hand until the onc nurse got the drugs started cuz he could tell I wanted to bolt!  I'm hoping none of last four taxol/herceptins make me feel that way.  I don't think they will because going into the A/C's - I KNEW I would feel like crap for days and I really don't have that with the T/H's. Thank goodness.

I'm not sure how many of you are doing reconstruction but since I've already done that and nipple reconstruction/tattoos - please let me know if I can answer any questions.  I also had a lift on my healthy breast for symetry.  No problems with any of the surgeries and I had very little discomfort.

Hope everyone has had a good week and will have a great weekend!

Dawn

Some good news for me today, Ladies.

I just came back from Taxol #3 and am scheduled for Taxol #4 in three weeks.  The tumor board at the hospital is convinced that I should finish with Taxol since I have IBC along with DCIS, ILC and IDC.  They want to throw everything at it.  Anyway, the stuff is working.  The onc could not even find the tumor today.  It was originally 6 cm.  I'm happy.  He said, "I'm amazed.  I'm very, very encouraged."  Squeezing an ounce of hope from this guy is like trying to get blood from a stone.  In general, the hospital is not changing treatment for anyone unless their tumors are getting bigger.  They want to see more studies.  My tumor was ER+ and HER2-. According to the latest study (last week) Taxol was found to be ineffective with this type of tumor.  You never know.

Hi all

Back from my 4th and last taxol.  And no neulasta tommorow, so hoping less aches and pains. 

Shrink, great news on the tumor news.  Hearing stuff like that makes me all the more confident that the drugs we are getting really do work.  Sometimes I just never know.

Sounds like more and more of us are making it through the taxol.  Today I went to see the radiation doctor.  I have an appointment next week to have them do the calculations of where to aim the rads and tatoo me, etc.  Then my actual treatments will start on Wednesday, the 31st.  Happy Halloween!

Kathleen, I asked him about rads after a mastectomy.  He said that the common practice is to do radiation if any nodes were positive.  I had one positive node, and he said if I had a recurrence it would likely be in the chest wall where they did the mastectomy.  This is exactly what the rads are meant to prevent so he recommends the treatment.  He said due to the scar tissue around remaining nodes it increases my chance of getting lymphodema from 5% to 10%.  I don't like that, but not much I can do about it.  I am going to go to a specialist and get exercises I can do and probably get fitted for a sleeve in case I need it.

The doctor said I will find rads so much easier to deal with than chemo.  He said the fatigue with rads is much less than we have had with chemo.  That was good news.

Hope everyone is doing well tonight.

Hello everyone,

Shrink, that is the best news ever!  This is the kind of news we all want to hear.   Best wishes for the last Taxol to continue to do its work!

Garnetann, congratulations on being done!  I hope these next two weeks are gentle on you with se's.  Celebration time!

Terry, thank you for the wonderful website of the dragon boat team in Buffalo.  I'm going to forward the link onto my group for ideas for our website.  The video is really beautiful. Those Buffalo women are very inspirational!

Debbie K., thanks for the info re rads.  Now I'm worried I'm not getting radiation.  I will see my surgeon next week and talk to her why I'm not getting it.  I hope there is some clear-cut reason rather than being in the "grey" area, which makes it so confusing.  I had one lymph node with microscopic cells and a tumor less than 1 cm.  But now I'm reading that radiation really improves the odds even with small tumors.  So much more to learn.  Good luck with your rads.

Dawn, thank you for offering info on the breast reconstruction.  I am really curious about the next phase of this process.  Did you have implants, with the tissue expanders first?  I have so many questions about the exchange and the nipples/tatoos.   

Cyndi, I sure hope that UTI clears up finally.  I'm so sorry you ended up in the hospital.  Things can get out of control way too quickly during chemo treatment.  My doctor gave me some antibiotics for my trip, just to keep on hand in case I feel some infection coming on.  I hope you continue to feel better!

Gracie, did you request the BCRA test or did they do it routinely?  I really want the test done, mostly for my daughters' sake.  The more information we have, the better prepared we can be.  Congrats on being BRCA negative! 

I'm feeling few se's from my last chemo.  I went back to work yesterday for the first time in four months.  It was a little difficult to concentrate, but I know it will get better with time.  I also changed my walk with my dog to a very slow jog with my dog.  We both loved it, but I'm a little sore today! 

I hope you all have a wonderful weekend.

xoxo

Kathleen

Hello all!

Congrats to those finishing up with chemo!Hope ou are all feeling well.

I had a 3 week post chemo check on Thurs; got my script for tamoxifen, and had my pre rad Ct scan to do the mapping. I have to go on Tues for the simulation, and I think I'll be starting sometime next week. The onc said I am scheduled for 28 treatments.

They the chemo onc wnts me to get my port removed as soon as possible, now that I will be on tamoxifen...... the whole blood clot issue. so I'll be calling the surgeon this week to  discuss that.

 They also want me to consider the BRACA testing, so I'm deciding about that also.

I'm generally feeling pretty good, still have some fatigue, but glad that it's getting better!

Hope you all have a good weekend!

Bonnie

Gracie, thanks for sharing your port removal experience with us.  I'm hoping I get the ok from the onc this week for mine, wish me luck.  I get my blood drawn tomorrow for the tumor markers and meet with him on Thursday. 

Congrats on your BRCA testing!  I'm still debating whether to test or not....that question is on my list to ask. 

I was thinking, and I'm sure the drs were thinking, that once I stopped chemo the hole would close up quite rapidly.  Unfortunately it isn't going that way!  I meet with the surgeon again on the 29th for a follow-up on this.   Guess I'll see then.  Not sure there is a next step in this though, just patience. 

Good luck to all of those starting rads soon! 

Kathleen, you're welcome for the link.  I am getting my dr's release this week so hope to start participating with them soon.  

And back to work again, good for you!  Slowly we're all returning back to.....well, our new normal.  :-)  

DebbieM, waiting for test results can be so scary and frustrating.  Let us know as soon you as hear from the dr. 

Bonnie, sounds like you're starting the next phase of your treatment with renewed energy. I think once chemo ends, its just such a huge relief.  

Thanks, Trish, for your kind words.   And you're right, the energy is coming back albeit slowly and the hair is sprouting, I've got a teeny, tiny fuzz patch all over!  :-)  

Well, the rain has finally ended and the sun is shining brightly.  Might have to go for a walk today and soak up that warmth.  Hope everyone is having a terrific weekend!

Trish, thank you for the perspective from a year ahead of us. I know that I have come to depend on everyone on this thread and care about everyone too. It would really be a shame for us to all just go our separate ways after this awful chemo part of tx. I hope we can keep our group going. Also, if any of you ever come to Las Vegas, please let me know. I'd love to see you in person!

My UTI is GONE!!! So I hope to start feeling more energetic soon...but I have taxol #3 on Thursday so I will only have a short time of feeling good on this cycle. Better than no time feeling good though.

Hope everyone had a great weekend!!

Cyndi

Shrink -  WOW!! They couldn't find the tumor!  Sounds like your chemo did it's job for sure!!

Cyndi - so glad the UTI is gone! 

Terry - I had a small opening after my re-excision this past April for the recurrence that took almost 6 weeks to heal - wasn't big enough to postpone chemo but if it hadn't healed the surgeon would have re-opened it a bit, removed scar tissue and stitched it back to allow it to heal correctly.  Let us know what's up!

Debbie K - Happy Halloween indeed!!  More than once I have hoped it was April Fools Day!!    Let us know what it's like!!

Trish & Watson - Thanks for checking in on us!  Congrats on being survivors - it's so good to hear!

Gracie & Kathleen - when I was first dx, I didn't want to do more surgery than needed and left the healthy breast.  I chose reconstruction with the mastectomy (surgery was 2/9/06) - I just couldn't see myself waking up with a D on one side and zippo on the other.  That surgery was the only one I had to stay overnight in the hospital for, but I was not in pain and I started the stretching asap and had no issues with my shoulder.  I chose a silicone implant and my ps filled it with 200 ccs during the surgery.  My pathology came back with a .2cm IDC so on 2/22 I went back in for an axillary dissection - 5 nodes - all clear.  No chemo because .2cm is so small and no rads since mast.  Started Tamoxifen.  Fills went well except the one that she put 100ccs in and I was pretty sore the next few days so we did 60 ccs at a time for the rest - went to 750ccs.  Finished fills and "rested" for a couple months.  7/18 had the exchange surgery and a lift on my healthy breast for symetry.  Outpatient - no pain, even my healthy side.  Only problem I had was the tegaderm that was covering both breasts because my youngest made state all stars for baseball and we went to see him play in 90 degree weather and I was sweating and the tegaderm drove me nuts so I had to take it off a few days early!!  Had nipple reconstruction in mid October - outpatient - very weird but not painful.  My ps has patients keep a hard cover over it for two months for protection - she uses part of a syringe - where the finger holds are - sort of like a hat.  Worked great but looks horrible under clothes!!  the tattoo was done in her office in January; she numbed me cuz I'm such a baby and then I had her touch it up in early March.  That is when I found the lump that turned out to be a recurrence when I was putting lotion on......................

I also did the BRCA test because I don't know much about my biological fathers side - mine came back negative.  Big relief!

Let me know if anyone has any questions or if I confused you!!

Dawn

Kathleen - ooooooooooooh, the drains!!!  I actually forgot about them!!  Not sure how!!?!  I had two with the mastectomy and the only problem I had was when I changed from the UGLY zip up thing from the hospital into one of the softee roo pocket camisoles (very comfortable www.softeeusa.com ).  My own fault of course; I was used to the grenades being pinned to the fabric and they are just "in" the pocket and I didn't have a good grasp on it when I pulled it out - didn't quite hit the floor so it pulled when it did hit it's own bottom!! OUCH!!  Luckily I didn't open up any stitches but OUCH!!!

Believe me, only happened one time!!

I did not have any drains on either side from the exchange surgery or the lift and I was extremely relieved!!!

I think I forgot to say that I did have a tissue expander and there is a world of difference and comfort going from the expander to the implant.  Much squishier!!    Obviously not as squishy as my other one (especially after 3 kids!!) but definitely better!

I'm not sure what radiation will do to my silicone implant or my reconstruction but my ps said we'll handle it - going to be interesting for sure.

Let me know if you think of anything else!

Dawn

Debbie M: you know I never even gave it a second thought doing both at the same time; my onc told me to start the Tamoxifen whenever I felt comfortable with it.He knows I am doing the rads. And my rad onc knows that I started it also. But I have read somewhere on these boards that some oncs say to wait until after rads to start it.hmmmmm, guess I'll just see how it goes and make sure i tell everyone again that I am doing both...... just to make sure we are all on the same page.

I went today for some more "mapping" for the rads, I go tomorrow for the simulation and to make sure everything is all mapped correctly. Then on Thurs I start the actual rads.

Also have a date for port removal.... Nov 6. can't wait for that! The only thing I'm concerned about is I have to be off the blood thinners for 5 days prior to that. It's like a catch 22...... on the thinners because the port caused a clot, take the port out because its causing clots, get off the thinners to get the port out!

Anyways, hope everyone is having a good week!

Bonnie

Taxol worked for me although I'm HER2 neg and ER pos.  I did have a very large and agressive tumor though.

I was going to comment about the Taxol post as most of us here are already done with treatment and it's really a moot point.   I refuse to question my decisions now because there isn't a thing I can do about it anyway.  

I was giving her some slack considering she is quite new to the boards, what two or three posts? 

But, I do understand your anger, Gracie. 

Anyway, the sun is out after two days of rain.  I'm having a houseful of company starting tomorrow for my uncle's 90th birthday party on Sunday.  I'm cleaning and making up extra beds today...I HAVE ENERGY!! 

I'm so enjoying this..yeah, I know cleaning bathrooms and vacuuming...ha.   LOLOL  

DebbieM, I mailed the lymphedema info on Monday, hope you get it soon.   I'm very much like you in regard to wanting to know everything!  I ask for all copies of my path reports but never thought to ask about the scans.  I hope the next round of scans in three months give you the all clear.  

I go tomorrow for my follow up with my oncologist.  I had blood drawn on Monday for tumor markers so hope the results are in and they are normal.  

Bonnie, Nov 6th, is that date circled?  :-)  Good luck and let us know how you do.

For all of you deciding on reconstruction, I wish you the best.  It's such a hard decision to make.   I know my sister started with saline implants but changed her mind and now just wears a prothesis.  It's very much an individual choice. 

Good luck to those starting rads soon!