Starting chemo January 2009?

Jess, great news that everything is o.k.

Lisa, OMG, Let's Make a Deal sounds fun, I used to love that show as a kid.  Glad to hear your Tamox is going well, I am almost 3 months into Tamoxifen and any side effects that I did have are gone.  I got hot flashes and (TMI alert) vaginal discharge for the first 3 or 4 weeks.  They have both subsided and I feel great. 

Hope all the Jewels are doing great!

Lisa - I take it at bed time too.  But it stays in your system a long time. 

Lisa, o.k. apparently I am wayyyyy to emotional, I bawled through your entire video!  I made it about the first 30 seconds and then the waterworks!  It was lovely and personal and your family is so gorgeous.  Your kids are just so beautiful.  I loved it, thanks for sharing.  I don't have any constructive critism, I thought it was perfect.

ddlatt:  congratulations.  Hope you enjoy your visit with Mom.  I start radiation today and can not wait for my time to post "I am done with it ALL!:

Jess:  Scary.  so glad the news was good when you went to see BS.  I have found a small lump on my upper back and not sure if it is just a pimple under the skin or what but it has me worried.  I do not have any other pimples on back so not sure why I would have just this one.  Also has been there for a week or so now.  Will ask about it at rads today.  First rads today at 2 p.m.  Not looking forward to starting this routine and not really sure what time of day I should ask for since they said after this one I can pick time.

Kathy:  Wow, frustrating results on the BRCA.  I had to look up deleterious up in the dictionary  did not even know what it meant.  Why can't they just speak in plain old english that we can understand.  Still looking for a genetic counsellor to find out if I should test or not.  Had a great time at the lake.  Beautiful weather all week. Wish I knew you were so close maybe we could of arranged a meet. Maybe next year.  We come out every 4th if possible.  We always make a float for the parade in Nashwauk.  Ours got second place this year.  The kids have a lot of fun with it.  Adults do too by the way.  I have in the past years walked along the parade route next to the float in whatever costume I was assigned.  This year I could not decide if I really had the courage to walk in front of all those people.  I have been sort of "hiding" a bit and avoiding social situations when possible.  I had the option of  riding in the van and after much thought, I decided to walk only this year I wore my Cancer survivor Buff on my head and a sandwich board that said "Get Tested" on both sides with a pink ribbon under it on both sides.  I figure if one person on the parade route gets tested because I walked I have made an impact.  Parade is not long so the walk was not too bad.  I actually was able to bike from Hibbing to Nashwauk with my DH and his sister.  About 5 miles each way but went 5 into Nashwauk - stopped for breakfast and coffee and then biked back 5.  That was a challenage for me, especially the hills.  

Just gotta say this because it is still bugging me.  When we got back to cabin my DH and his sister were like "well should be go around the lake now - that was so short a ride" to each other. I was really hurt.  Took my feeling of accomplishment and torn it right out from under my feet.  Now I know how a kids feels he/she comes home from school with all A's and B's on a report card and we say why didn't you get all A's.  Well anyway hid in my room and cried for awhile. DH knew something was wrong.  Finally I was able to tell him how I felt and was able to continue to enjoy the rest of my week.....Pre-cancer I probably would not have ever shared those feelings with him so I guess some good things have come about as a result of this journey.

Kim:  Any time you have to get on an airplane it is questionable what will happen.  Best to always have a relaxed attitude and go with the flo.  4 a.m. to take DS to airport - the things we do for love.

Gotta run.  have to go shopping for something to wear to rads.  Nurse told me my regular bras would be uncomfortable and to go look for "barely there" brand or something with built in bra.  What did you ladies wear to rads anything special?

PATTI

lisa, just sent you a PM. found a professional photog in your area who would love to do the photography for you for free if you don't win the contest. xoxo

Lisa-Hope you win! Very touching. And I'm jealous of the hair! Sorry Lets Make a Deal was a bust. I have a friend who used to watch it every day while on maternity leave. Said her kid's first words were Come on Down--and of couse I believe it.

LadyJane-I know what you mean about the frustration and sadness over not being able to do 100% of what we used to, and people not always getting that. I've had a few of those moments with dh. Good to be able to talk about it and not let it build up to erupting volcano point. I seem to erupt more often than before, though. Could be the Arimidex on top of everything else.

I was able to wear a regular bra and prosthesis through the first 3 weeks of rads. Then I switched to a bra I bought from Blue Canoe online, called the Jill. (Recommended on the rad thread here)It's very soft, but not much support for remaining boob but enough-maybe I should have bought a med rather than a large (and I'm not a small person). I put a cotton fiber filled form in the mx side. I've also worn Underarmor sleeveless, which gives some support by squishing real boob but doesn't rub. I wear it inside out so seams don't rub. Now that I'm not teaching I just go braless with a cotton shirt unless I need to go out. Good luck today with starting.

Well, found out I get Ibandonate for the bisphos. trial. I am thinking I'll go with that as it is apparently as powerful as Zometa and is oral, so I can get my port out. I still need to talk with onc, but they are fed exing the drug so I start Monday.

DS texted me that he found girlfriend at Zurich airport, and now mommy hen can relax (my words).

Hi Jewels:   Well I'm getting some answers.  My BRCA2 "deleterious' variant is the same as being BRCA2 positive.  So my risk of getting a new bc is about 60% and ovarian cancer 30%.  Because I have already had bc, and chemo and rads and I am unique --- yippee!   I had med onc appt this AM and rad onc appt this aft -- both strongly encourage me to get my ovaries out - maybe a hysterecomy if that make sense to my OB/GYN. 

My med onc believes my bc risk may be lower because of my chemo and rads, and I may be a candidate for enhanced surveillance, but he wants to present my case at their clinic care conference and get the input of the entire group of experts  (med oncs, rad oncs, surgeons, genetics dept etc...) and perhaps involve his colleagues at the Mayo Clinic.

My rad onc believes I should get a bilat mastectomy and eliminate the risk as much as possible.  That was after talking with three med oncs ( they will be involved in the care conference next week).  He also says radiation does not contribute to increase risk for bc - the genetic mutation is a faulty protein meant to repair cancer cells, and doesn't effect tissue healing related to radiation.. so that was good news.  He also believes the radiation will not limit my reconstruction options -- but that is best answered by the plastic surgeon.   I need to wait 6 weeks post radiation to have surgery. He also talked about a recurrence or new breast cancer as a very ominous finding and my long term survival rate declines dramatically if that happens. 

I'm going to wait to see what my med onc says.... will setup the OB/GYN appt and plan that surgery... and get myself psychologically prepared for bilat mast, as that is what I suspect will be recommended.

My DH is furious about the course of my care and having a lumpectomy and rads for absolutely no reason.  And why didn't they look for the hereditary cancer sooner.  Have to let him process this in his own way.   I feel I made the best decisions with the information I had.   Getting hereditary cancer at age 51 is unusual and my bc family history is not strong.   Seeing the genetic counselor at the beginning would likely have altered the course -- I can't go back, no sense spending energy with that -- move on, get through it, plan for the future. 

Me Again,  I added my last post and realized I missed a day of posts..

Lisa:  wow, what a wonderful collection of pictures.  Well done.  Hope you win. 

Patti:  My insurance company told me they would pay for my genetic counselor and testing if that would potentially change the course of my care.  Not sure what the total was -- will let you know when I find out.

ladyjane - i had two quotes for genetic counselors here in backwater reno. one was $100 for a one-hour consult, and the other was $500 for consult and blood test. i asked her how much it was without the blood test, and she said it was still $500 "because we work with a physician." what a joke. 

rose, i had a terrible rash during radiation and it was extremely itchy. i kept the area liberally moisturized with aquaphor right after treatment and before bed, but didn't put anything on it in the mornings because it would still be sticky by 2:00, when i had my rads. for the itching i used 100% aloe vera gel. i finished rads on july 6 and already the rash has gone away, the skin is clearing up, and no more itching. i had tomotherapy radiation, which is very different from conventional radiation, and supposedly causes less skin effects. 

if any of you are serious about photography (or know those who are and can pass this message along), think about joining this organization of photographers who work with local hospitals and take photos for families of children who have cancer and who are not going to live long. www.momentbymoment.org.  it's a great group. we take photos either at the hospital or at the family's homes, only black and white photos, and we give the photos to the family in print and on CD, free of charge. it's an entirely volunteer organization and there are lots of these kinds of groups around the country. 

Kathy, that really sucks.  I do agree with your husband, they should be doing these tests at diagnosis.  But, I also agree with you that what is done is done, and we have to move forward.  I have been waiting and waiting for a referral for genetic testing, but I think my paperwork got lost because it's been since Nov and nobody has called.  I am going to follow-up and have that done as soon as possible. 

Hope the jewels are having a nice weekend. We have some lovely weather here, and I went for a 2-hour hike in the hills with a friend yesterday. Feeling sore but not too bad. Unfortunately the sweating underarm is major cuz I can't wear deodardant. My "skin breakdown" from rads is bigger, but again no pain due to continued post-mx numbness, which I usually hate!

I've been holding  2 jobs through this whole ordeal. I've been catching up on some editing work, and got some proofs in Friday from the printer. I found SO MANY errors that I made!! Very scary. Now I need to spend twice the time to fix them. I swear I triple checked originally. I hope chemo brain goes away, and soon.

Kathy--You sound like you're dealing well with the new genetic testing info. A lesson to me who has now been recommended to get it post tx as well. Like you they didn't recommend it originally due to my age (then 52). I was wondering about what you had mentioned before about needing the info for your sons. Will the mutuation affect their health or do they pass it on to girls?

Plutz--I'll be sending good wishes this Friday. They'll probably send you home before the weekend is over. Remember a little soft pillow to protect you from the seatbelt on the way home. I used one for a couple weeks after my mx.

Kmmd--  Cr@p about the lashes. I heard that happens  because they all grow in at once and we normally lose lash/brow hair every couple months, but it's usually staggered. I'm finally getting mine and really don't want to lose them. Oh well...

Hello All,

I just got back from a festival in Michigan called the Bliss Festival.Bliss is a music/art/dance/story telling festival.   Some of the preformers were:Jon Jorgenson  Quintet, That One Guy-from Berkeley, The McDades,and a few more. Can't remember them.

  I had a wonderful time.  The weather held out; people didn't say too much about my terrifically short hair cut, only one person rubbed my head and a photographer-who had a booth to make tintype photos of people- took a picture of me.  He said he wanted to take advantage of my white hair and the silver tones!  I had mixed feelings about doing this, but I have to say I think I may not dye my hair anymore.  it is very white on the sides, darker on the top, and I kind of like it.  

Guess what?  Tomorrow is my last day of Radiation????  I am happy and then I am afraid at the same time.

btw, anybody having lots of hot flashes? If so, do you have any other symptoms?  Last Friday I had about 10 of them throughout the day and then about 5 at night.  

Oh yeah, chemo brain.  Talk about getting disoriented at a festival.....that created a couple of anxiety induced sweats i tell you. Very scarey.

Hello my January mates!

It's been 9 weeks out from last TCH, my life is somewhat back on track.  My hair is growing out slowly, I just post some pix if you want to see my progress (under topic 'Hair I come').  I'm still getting Herceptin every 3 weeks until New Year, no side effects at all with Herceptin.

I had hope from the beginning after my diagnosis by reading this post, and wish my completion of chemo will bring that hope to some newly diagnosed ladies.  Chemo left me with loss of a few fingernails (not painful).  Other than that, I've been very blessed, I've gained an experience that made me stronger and more determined as a person.  I appreciate life to great extend now.  I'm 39 years old and have 2 beautiful girls (5 & 7 years old), they have also gained an experience hopefully just as a by-stander.  I'm thankful for my family, my friends and last but not least all the angels from this site, you've laughed with me & cried with me, 

If there is anything I could do to help someone, please don't hesitate to contact me.  I'm a pharmacist, I've gone back to work over 2 weeks now, and customers have told me that I'm a living proof that determination conquers everything.  I have to agree with them.  I've since met 2 ladies who were newly diagnosed.  They left the pharmacy with my bussiness card and cell phone# knowing that they could call me anytime.

Wish you all a healthy smooth sailing journey from now on out!  Love you all!

Cil.