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was re: exercise/miscellanous

ldrunnrmom
Posts: 15
Joined: Jun 2002

HI there- I sent this message in a couple of days ago- and the notice that it was submitted showed up- but the message never did. Not that this is important or anything but...I think I will try again :)

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Now Marty, we are going to want to hear all about how things go, ok? So dont forget to write and tell us! Will be praying those lymph nodes are negative.

You asked what kind of BC I have and how old I am :)
First of all I am 51 and have three kids- all -starting this Fall- in college! Yikes, huh? Oldest is my daughter Marisa, who will be 24 and is in her second year of graduate school at Univ of IL/UC. Second is son James who is Jr there at UIUC too. The baby is John who is 18 1/2 and will be attending local college here.

My diagnosis was DCIS and DCIC (or would that be IDC?)Nuclear grade 3, histologic grade 2- tumor was 1.5 cms. I found teh lump myself- and had a devil of a time getting the appointments all straight -didnt seem to be much of a hurry to anyone but me! I was thinking of your problems with the insurance- and my thought when I was having trouble getting those appts settled was "dont they realize I could have cancer here!!" Like..."hello!!" I could die maybe? Sigh. Anyway...originally we had the lumpectomy and nothing else. When it was found to be invasive cancer we had to go back in the next week and reopen the excision and clear up the margins a bit better- which was lucky because they did find more cancer cells- and we removed some 10-15 lymph nodes. We had WANTED to do the sentinel node type biopsy but there were some scheduling problems. Nodes were negative which was good! Then we got the results back on hormone receptors- which I gather is the one result you WANT to be positive? Anyway- mine was negative and the HER2 was a plus 2- which I understand is associated with more aggressive tumors. The DNA and MIB-1 Ki-67 results were in the unfavorable range which is associated with adverse prognosis :( And Ihad a high level of Cathepsin D- which is a predictor of shortened recurrence-free survival. However, my p53 results were favorable- which in node negative BCs is associated with favorable clinical behavior. Let's see...anything else? Cant think of any right off hand. That is enough for me! So from there I went off to see the wizards...I mean the oncologists! I was led to believe we would start with radiation- but that isnt how it turned out. I saw the medical oncologist and he said that we needed to address this cancer aggressively and that we needed to be concerned not only about the current cancer but the very real possibility of recurrence in my other breast. They looked at my veins and discussed how the level of Adriamycin I would need to be taking could damage the veins,etc...I guess it is so powerful that the drug can eat away at your skin (necrosis) if there is leakage?!! I was sitting there looking at my poor hand from what the anesthiologist had done the previous week- still a spectacular rainbow of bruising and yuck- and I have to say I didnt have to think TOO hard about whether to get the catheter implanted. I was insisting on going to a week long out of state event connected with my kids and my job with a non-profit organization called Destination Imagination- which didnt make them all too happy...but they agreed that I could if I was sure to rest ( haha) and we would start the treatment as soon as I got back. Of course I agreed- I was anxious to do that too! So- we had that port installed before my trip...my husband had been concerned that I was rushing to do it and would then have the whole week away to have to deal with the soreness etc. He reminded me that the Dr said they could use the port the next day if they had to- I kept saying but...gee...that seems like it would hurt maybe? Just because they CAN doesnt mean it is what you should do! Seemed to me to be worth it to have two weeks to recover before accessing it- if possible. Last week while I was waiting to have blood work done, there was a little lady that came in and she was softly complaining about how much her port hurt- she was still bandaged and would be having her chemo the next day using it! Yikes. Yeah...I am a baby about some things. But if I had HAD to do that I would and beeen fine. I am also fairly stoic when I have to be. I dont think the port "hurt" btw- I think it was kinda uncomfortable more than hurting. And thatmakes sense- that it would be a little uncomfortable.

Anyway...I think the chemo has gone fairly well overall. And it looks like 4-5 crummy days then a week or two of relatively less intense stuff. The low blood counts certainly make it more complex...but the shots are not too awful. Annoying but not really PAINFUL. Perhaps it is from my vantage point of having three almost ten pound babies that helps me keep that in perspective though :)

I thought it was neat to see how Lisa has been able to keep up with her tennis and her golf. I have found two books lately that talk about breast cancer patients and exercise. Breast Fitness:An Optimal Exercise and Health Plan for Reducing Your Risk of Breast Cancer by Ann McTiernan M.D. Ph.D, Julie Gralow M.D., & Lisa Talbott MPH (St. Martin's Press)is a good one and it led me to a group called "Team Survivor" - I just wrote to them about joining. It looks like they have affiliates in both Chicago and Milwaukee and are interested in starting one closer to me- half way between the two :) They have a web site if anyone is interested http://www.teamsurvivor.org/events/index.html The other one is Essential Exercises for Breast Cancer Survivors (Halverstadt/Leonard). I found both books at my local library but they are also available through Barnes and Noble online for fairly cheap. I decided to order some books from there recently and did a search under "breast cancer"- it is helpful to see what is out there! I pre-ordered (yet to be released ) a cook book and a book for chemo patients -it is exercise plans for them. I went ahead and reordered that one because altho I hope to be done with chemo soon- I still have my m-i-l that will be doing it for monthes. I will let you all know if they are any good!

But about the exercise stuff- in the one book it said that while doing chemo you should not be exercising above 65%- and you cant really do a complete stress test right now to determine what EXACTLY is your maximum heart rate- so do that the old way- 220 minus your age and then take the 65% off that. The frustrating thing is that it doesnt take much to raise my heart rate right now! I cant really RUN- I have to walk and not really over 3.5 unless my heart rate is to rise too high. They say that walking and exercise can help you with fatigue- but too much or too intense can make the fatigue worse. I can only assume with my low blood counts that could be an issue too. I plan to discuss this with the Dr on my next appointment just to be sure. I do know better than to get on the treadmill when I am dizzy etc.

OH..Marty! The other thing I had done before starting treatment was to have a muggascan- not sure if that is the actual wording etc but it sounds like that. With the level of Adria I am taking- it can cause some heart troubles- so they do this thing with nuclear dye and a scan- it is no big deal at all but apparently very interesting. I didnt see much- but my husband got to see my heart working in all its glory :)

Well- thanks for the opportunity to chat! If you want to talk privately some time- DO write to me at LDRunnrMom@aol.com We also have a family web page- the following link is to the latest outing I went on and has my WIG- the last picture! It is really very nice but I dont bother with it much. I am sure if we went out to dinner,etc I would - but for every day I dont care that much. Too hot! I do have a wig that has the top of head open ....maybe I SHOULD wear that to justify the expense of getting it...it is hard to know when you first start out- what you will feel like later.http://www.groberg.net/Heather_6002.html

Hope today is a great day for everyone

Chris

banker
Posts: 321
Joined: May 2002

Hi Chris, this is some posting here..... Finally I read someone is ER-negative with HER2. I have that DX also, for the 2 nd time. Undergoing chemo at the present time , had treatment yesterday. Sounds like you are on top of things. Keep up the good work . I had adriamycin during my first chemo and the MUGG test, interesting, had it before and after chemo to see if chemo had done any damage, so far so good. This time I am on CMF protocol, a bit better to tolerate. I am not as sick. Seems everyone is ER positive but us, how do you feel about that ? Docs don't have to many answers.
Take care... Emmi

ldrunnrmom
Posts: 15
Joined: Jun 2002

Hi Emmi~

You are the first person who has metioned they had a muggascan- wonder why when so many do seem to take Adria- that they dont also have this scan done? Interesting- but there is a lot that is "interesting" about what various doctors do or dont do and why!

About the negative receptors- well I was almost sorry to see that- since I had heard so much about how important- no make that easier(?)it would be if I had positive results there. The thing that is confusing to me about my Dx and negative receptors is the part where I will STILL be taking tomaxifen- I think I have found now where the Dr is looking that tells him this is good idea for me- but most literature doesnt mention T except as used for postmenopausal and HR +.

Another thing I noticed- does it seem like more women have BC in left breast? I am probably nuts but almost every woman that has mentioned it on this board or others- seems to be on the left side. Mine was on right side- and where the surgery was is more on the inner mid point of the breast.Which is another thing I wonder about...I see so much about reconstruction but nothing really about those of us with partial mastectomy that want to have some work done later on to adjust the two breasts to match better. My right breast is not hideous but it is mishapen- especially compared to the left one. So later on- much later after radiation etc- I would like to take care of that and make the left one smaller to match. I was told that insurance would cover both breasts to modify what is there. Anyone with any experience with this? I may change my mind but right now I am pretty certain it would be better to go ahead. Just would appreciate some thoughts.

About HER-2 and being positive there. Isnt there something they have you take when this happens....starts with an H? I havent heard it mentioned by my doctors.

Well time for a hot flash I see....I swear they just get worse every day!

Not complaining...really!

Chris

cruf
Posts: 931
Joined: Oct 2000

Hi Chris! I just wanted you to know there are other women out there with right breast cancer. I'm one. To be honest, everybody I know has it in the right side. It's weird! I also agree that my hot flashes seem to be getting worse! I've been taking Tamoxifen since Oct.2000. Maybe because it's hot outside I'm feeling the heat more! I tried Paxil and neurontin to help get rid of them(at least lessen them) but I had reactions to both. I'll continue to use Vitamin E and hope one day it will work! I guess it's better to sweat than to have cancer! Take care. HUGS!! Cathy

ksfc
Posts: 252
Joined: Apr 2002

Chris,

I also have right breast cancer, scar right in the middle above the nipple. My mom had right breast cancer, a little different location. I also had a mugascan before starting AC. The hot flashes started during AC, are continuing during radiation and I haven't even started Tamoxifen yet - oh well!
Diane

georgeann
Posts: 44
Joined: Jun 2002

Chris,
My cancer is also in my right breast. Fortunately (or so they tell me) I am left-handed, so actually my motion has been less restricted. I also think it is in a similar location to yours. My insurance company will not pay for alterations to match the breasts, after a "lumpectomy." Unfortunately I had it done twice because the first time the margins were not "clear." So my one breast is truly misshapen. But at the moment I am just glad I am "fighting" the good fight.
Georgeann

nancys
Posts: 336
Joined: Aug 2000

Hello Chris, I have had four MUGGA scans since treatment staarted. I was in a trial and the MUGGA's are part of the trial. Had one before I started chemo and 2 during and 1 since it's all OVER...I had 4 cycles of A/C and 4 cycles of Taxol and so far no heart damage. I will buy the book you suggested, Essential Exercises. I do not exercise much, only the arm exercises and a short ride on the stationery bike. I am also in the midwest, Kansas, and used to travel to see my son in Greendale WI, then in Chicago. He has moved back home now so I don't get up that way anymore. I am lucky with the Tamoxifen, very few hot flashes and they last only a few minutes. Mother nature is keeping us hot here in the midwest right now with temps near 100. Sending you love, Nancy

nasa2537
Posts: 317
Joined: Apr 2002

Hi Chris...so glad to hear "attitude" in your post...I think having a good outlook and taking this all in stride is such a big part of recovery! Solunds like things are moving along well for you, and am glad to hear that. Thanks for all the info on exercise...will be checking it out! God bless, Cyndi

ldrunnrmom
Posts: 15
Joined: Jun 2002

Good morning my pals!

Well- tomorrow will be treatment #3 of chemo. I am about ready to celebrate already...wahoo!
Now I need to catch up on the mail here...
Nancy wrote :" had four MUGGA scans since treatment staarted. I was in a trial and the MUGGA's are part of the trial."

Could you tell me(us) about this trial?
As for the book on Essential Exercises- see if you can find it at library first- then buy if you like it. If you dont exercise much- or havent been "into" that- the book would probably be perfect for you! It is nice.

Sounds like we are Midwest "sisters" :)and yes it has been HOT here lately! Another reason not to wear teh wigs- my poor little hot head :(
Emmi- So did you take Herceptrol (spelling?) Ihavent found anyone taking thatyet and I wondered why and when it gets taken. From what I read- my HER2 having a plus might make me candidate...
Thanks for the info about your muggascan- I think they said I would have another of those after finishing AC up too. Makes sense :)

Emmi- could you elaborate on the CMF protocol? Just finally heard what my mother in law will be taking for six cycles- and I think that is it- Cytoxan, Methotrexate, and 5 FU? I am worried about her- remember she is 75 They told her not to worry about side effects and that she wouldnt lose her hair. She started her first treatment yesterday and I expect to hear from her later today or tonight. I hope it went well!!

How do I feel about being in the minority when it comes to being ER negative? WELL... I guess like you- it seems to raise more questions which we dont seem to have answers for... were you told you would take Tamoxifen too? I still have to wonder about that...I keep reading and reading all I can find. Dr says that where (and I could be getting this wrong here and there- percentages wise) I might normally have a 15% chance of reoccurrence- if I take the Tamoxifen that is reduced by 50%- so it would be 7 or 8 people out of the 100 that would get a recurrence- does this sound like what you were told?

But...trying to keep the attitude positive here! For the most part overall everything is going pretty well and I hope the same for the rest of you !So I have no hair to speak of and am tired...and have bruises all over ( WHERE do they come from???) I do have periods of normality ( whatever that is any more) and can enjoy my family and life to a great degree :) What more can anyone ask.

Hugs!

Chris

Hi Karen, Stop stressing. My hair began to grow back after the first Taxol infusion. I am aquainted with another young lady going through treatment right now, just as you, and her hair is coming back in. I have been finished with treatment since April of 2000. My hair came in very thin at first and very ugly. It was dark, almost black, and I have always had light hair. It has taken almost a full year and a half for me to look like me again. My hair has always been slow to grow. It lightened up and I have a little more body now. I did not get the curls that some get. My hairline over my forehead was fuzzy for awhile, but that was the only curl that I noticed. About the pet scan..my Onco is like yours, no routine scans, just the 6 month blood work-up. He is the best in my area. I did, on my own, have a recent bone scan and an MRI on my brain. I have had arthritic pain in the pelvis and wanted to be sure there was no cancer there and the MRI was because I had some goofy eye pain ( that went away right before I had the MRI) I think our Doctors want to protect us from too much radiation from all those scans that may not be necessary. Have you tolerated the Taxol well? I was lucky with it and had only 4 achy days each time. Hope I have helped ease your worry. Sending you love, Nancy

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