first chemo done

I'll have to remember that Jill when it comes time for radiation.......there really is no history of breast cancer in our family other then one aunt.....I can't ever remember anyone else having it in our family as long as I can remember back, in either side, so I didn't worry about the genetic testing....I've warned my girls to start getting mammograms early but I really and truly believe what caused mine is those $%&^^!   hormone pills I took for all those years......started out with a low dosage and when those didn't work anymore, went to the highest dosage they had.......am hoping since I don't take them anymore and they're planning on putting me on that arimidex, that mine won't come back.....

I hope if Cody wants me to go to that many visits of radiation, it isn't at his office in Hyde Park....Good lord will cost me 100 a week in gas! LOL...........

Hugs

Deb

Kristi -

Hi.  I am glad things are going better for you this time.  You certainly do sound better.  You know, another woman I know told me that in her case, each subsequent treatment got easier too.  Perhaps it is because your body is becoming accustomed. 

As for the radiation - I did not have to bring anything.   However, they had my file from the other side of the building (medical and radiology oncologist are at the same site).   I am assuming, however, your radiology oncologist already has your pathology.  If not, make sure that your treatment file gets to him/her such that the two oncologists are working off the same info.    And yes, I just show up and they zap me.  Whole thing takes about 30 minutes - and that includes everything - getting aligned, getting zapped, waiting, etc.   Pretty efficient. 

As for traveling, I think your plan sounds fine.   They will probably give you about a three week lag time in between chemo and rads anyway.  That is what mine was.  I think they want the chemo treatment to run its course.    Supposedly, it takes about 4-6 weeks for the chemo to "leave" your system.  So, your plan sounds about right.   Still might want to check with your doc just to make sure.  Of course, you might be talking to the wrong person as I traveled less than one week out from chemo.  But, I did fine even then.    Interestingly, my white cells were still pretty low this time around myself - which was very strange as they had always been on the high side before.  

Anyway, I will answer your other note separately.   Hope the family is doing well.

Jill

Hi Jill,

Sorry to hear about your reaction with the Herceptin.  I have been getting Taxol+Herceptin this whole time.   Haven't you or was this your first Herceptin?  Maybe I am confused.

Just to add.... I actually opted for a bi-lateral mastectomy despite testing negative for BRAC 1 and 2.  I just wanted to rid myself of the worry.... I thought I was being proactive since at that time we thought it was "just DCIS".  Anyway, I believe I am definately predispostioned for cancer despite that test.  My mom died of BC at 38 and Dad has Stage IV Kidney Cancer.

The recent discussion on Radiation interest me as I am getting ready to head for 30 treatments of Whole Breast Radiation.....By the way my medical insurance is Kaiser ( Which at this point I am in love with the way I have been treated).....

I have had a Lumpectomy.....was told then that the best treatment for me would be Chemo then Radiation...(If I have had a Mast. then I would not have Radaition as getting the Rads will raise the my percentage of no recurrence).

After my final checkup with my surgeon, I was given two appointments, one for Chemo Oncologist and the second for a Radition Oncologist.

Chemo was decided.....now to see the Radiation Oncologist....

I was introduced to being able to particiapte in a Clinical Trial....which meant getting my boobs radiated one of three different ways....But I did not get to decide, I had no say....the computer would decide....This scared me. Also I had to decide if I would particapate or not before they did Chemo, because depending on the decission of which radiation I would get, would determine if I did Chemo first or Radation.....

Ok all this rocked my world as I am a planner, organizer....now I have no idea what is happening.

Going to this appointment I thought I would get Chemo, then Whole Breast Radaition....

While trying to decide....it came to me my Surgeons words..."After chemo, then you will need to do radiation.....this will take care of any hidden or micro cancer cells"

So I'm thinking if a coin flips and I get the partical radation (which sounded good...5 days vs 30 treatments, boy they made it sound good!) how will this get to what my surgeaon had described...

So I took a chance and called my surgeon...not expecting him to call back as I thought here I am asking for an opinion he would probably not want to be involved in.....

He called me right away...I explained...He said.."no go with the whole breast radiation"...I told him that I could not say his exact words, but the message I got was....and he said "that is exactly right...do the whole breast"....I love my surgeon! He is the man that has raised $65 million dollars for Breast Cancer research by bringing us the Breast Cancer postage stamp (in fact that is my sign on icon...it is the breast cancer postage stamp)

Some thought to the whole breast types of Radaition...Whole Breast is radiation to the whole breast...can be done anytime. And get every thing.

There are two others...Partical...they only do part of the breast, leaving other areas not treated...

The mammosite and another one I don't have the name right now are done through a tube with beads of radioactive material going straight to the site...then the mammo site is a ballon inserted with radioactive material to the site.....

The thing that the Radiologist did not tell me in the beginning.....the last two with the tubes and ballon.....this method that should be decided BEFORE a lumpectomy is performed. He did not tell me (or my husband who was with me) but yet this information was in paper work he sent me to help me make my decission....or else you chance a secondary infection....(Plus I would really not want a second surgery in the same area as my lumpectomy)

For me it is Whole Breast Radiation for 30 treatments Monday thru Friday. Just another 6 weeks of commitment to make sure I don't have to battle this hidden beast again.

****** after thought. I work in a preschool so I am exposed to Parents of many different types of proffessions.....One parent I know is an radiologist for large animals (with special conditions)....they both encouraged me to go WBR.

Please remember this is my personal experience.....has mentioned above decission are made case by case, personal prefference and many other factors around your condition.

Denise/Onehalf

Hey Critsl

  If ya remember right, I went to the hospital with that like a week or so ago, thought I had a blood clot!   still swelling up, just not as bad........and  that was in the ankle, foot and halfway up the calf and it was just the left side.......hands swell up every morning, but then they have for years.........Keep  your feet elevated as much as you can.....really helps alot!

Luv, hugs and prayers

Deb

Debbie

  Sounds as if you were having probs sleeping! The hubby and I went to bed last nite at around quarter till 8 and I knew it would happen, I got up at 4am!!!!!!! He's still sleeping.....go figger......Well at least that's 8 hours for me, usually only get 6 or so.......will have to take a nap afterwhile now for sure!

   And too strange, I was just telling the hubby last nite that my head was freezing.....and that I was tired of it being cold!!!!!!!!!!!!!!!

  The A/C does work for ER+.......I am living proof.....well have to see my regular oncologist to make sure, am seeing "mid level assistants" now, but the one that examined me last Thursday told me she couldn't even find the lumps in my breast or under my arm.....makes sense since after the 3rd A/C the doc said the one in my breast had shrunk 90%............not that it will change my treatment plan, but still nice knowing it worked and I didn't go through it for nothing....and I am ER+.

  Funny u should talk about the furnace needing a drip pipe.....I have Armstrong Laminated Flooring  in the kitchen, and something kept leaking water under it.....was messing it up bad, we checked everywhere you could check for this water leak, we were almost resigned to the fact that the slab under the house had a leak....until, I was thinking one day that the laundry room is right behind the kitchen.....the hubby went back there and looked, sure enough our furnace has a drain pipe for condensation, "HE" had knocked the pipe out of the drain when he changed the litter box and shoved it back into it.......this was several weeks ago, thought that kind of stuff only happened to us! LOL

  The foot problems aren't too bad...mine has basically stopped swelling....actually the Taxol isn't that bad yet...I have noticed the past couple of days that I have been extremely tired and usually feel worse as the day goes by....towards evening i feel bad, but not that bad.......heels are peeling, that's the worse part so far...... but I shall live!!!!!!!!!!!!!

Take care honey

Luv, hugs and prayers

Deb

I will start rads in Feb. I think.  Question: they saw suspicous spots on MRI in my right breast (cancer was on left side).  Given all that, do they ever do rads on both sides to eliminate possible cancer there?  I've had no biopsy on the rt side.  Mamo showed nothing.  Just wondering if I asked for it, if they might do both, you know, since I'll be getting rads on the left just do the right side, too.

Hi Everyone!!

Just finished my last round of  AC and start Taxol in 2 weeks..once a week for 12 wks. The doctor is pleased that I have done so well on the AC..we do not anticipate any problems on the Taxol but time will tell.. everyone does diff on diff things, I am seeing from these forums.

Deeg sorry you are having so many problems with your chemo..hopefully it will get better for you..Hugs

Cristi sorry about all the problems with the swelling.. sounds like you are doing all that you can to help aliviate it...will be praying for you Hugs

Sew best of luck with your rads!! Hugs

dc keep your head warm!! Hugs

Hope everyone has a better week!!!

Thinking of each of you in my daily prayers and thoughts!

~Belinda~ 

Colleen -

Hi.  Sorry for the late response.   My onc. sent me to a genetic counselor before I got the BRCA test, and she determined that it was warranted.  What rang their bell was my aunt on my DAD's side had breast cancer - but the reason it rang their bell was because of her age when she had breast cancer which was 43 (exact same age of my diagnosis).     Evidently, two women a generation apart under 50 with breast cancer is a "warning sign".   In addition, my Dad had prostate cancer at a fairly young age (58).    She explained to me that breast and prostate cancer were in the same "family" and while a large number of men will develop prostate cancer, what made this one signficant was again, his age.   If he had been 68 or higher, they would not have paid as much attention.   Also, my family history is somewhat limited - my Dad had one sister who had sons.   My Mom was an only child.  In fact, the family history suggested colon cancer as a watch out.   Interestingly, I had a colonoscopy two weeks prior to my breast cancer diagnosis due to this.   I guess I should have been looking a little further north.   Goes to show that genetics isn't that cut and dry.   In any case, my limited family "data base" caused them to be more cautious as well in terms of doing the test. 

Anyway, I learned a lot in talking with the genetic counselor - it appealed to the scientist in me.   First, it is a myth that the gene mutation is passed only on Mom's side.  It evidently is passed on the X chromosome, and because women have 2 X chromosomes, it can come from either Dad or Mom.    Net. your Dad's history is as important as Mom's.   Second,  the age of  at diagnosis is important as the diagnosis.    So, for example, if my aunt had been over 50 when she was diagnosed, they would not likely have done the test because an over 50 diagnosis is not as indicative of the gene mutation.  

Finally, in regard to daughters, sisters, etc.   The genetic counselor told me that the rule of thumb is that immediate female blood relatives begin mammograms at ten years younger than the diagnosed person's age.  So... for my daugther that means she should start mammograms at 33 (assuming no advances by then beyond where we are today).    My sister got her first mammogram at 38 (she is 5 years younger than me) and her insurance company asked no questions.     I guess one upside of having this is that we can protect our sisters and daughters.  

Interestingly, the genetic counselor also mentioned to me that she suspects there will be more gene mutations discovered over the next several years.  Right now, they only look for the two that are known (BRAC 1&2).     Also, there is only one place in the US that does this test - it is in Utah.  They have patented the methodology, which is one reason why the test is so blasted expensive.    

I hope that answered the question.   Please let me know if that was not clear.  

Jill  

Hoo-Hum,

Guessed  I bragged a litttle too much.

I had my last Chemo on Jan 7th. And like I said before all my treatments went well. Had side effects but was able to deal with them,...in fact I did have an easy time with it. But I was also told my Chemo cocktail was doable...and it was.

Well then comes Saturday evening....I had a mild fever...101.4 So I was instructed to go to the ER room and get Blood Work done.....I tried to tell them that I work with children and thur and Fri I was sending kids home with a 102-103 fever. So I probably have a virus.

After getting blood work and chest X-rays, next thing I know they are slamming my as....butt in the hospital....Guess my White Blood Count was in an alarming low range (low 1.0's)

No beds were available so I had to spend 16 hours in the emergency room (not a great experience, Had no pain before, now I have a lower backache and tender shoulders).

Well I have spent from Saturday to Monday getting my body injected with all kinds of chemicals.

At first I was bothered about being admitted until they explained that if they did not precautions and if a bacteria entered then I could be dead in two hours.....thats when I said ok lets do what you got to do!

Still don't not know why I ran a temp. Shortly after being in ER my temp read 99.9.

They were amazed that I was not feeling anything with my WBC being so low...(yet I can feel the a temp coming on...jeeeessssh!)

At first I was bummed because I had such and eay time, then this would happen on my last Chemo...then I changed the direction of my thinking, to the more positive....Hey at least it ONLY happened at my last Chemo....I could of had this problem all along.

 On a funny note.......well not totaly funny.

the doctor that was over seeing my care (Holiday weekend, so you get who's on call) When she came in to discuss discharging me today....She just stared at me for a few seconds, then she said "I'm just looking at your hair, you have more then I do". (I had my scarf off in the room and going topless) Then she lifted a wig and showed me her head. Blew me away.....She had many, most of her head bold with patchess of hair. She is not a Chemo patient....Just a few months ago all of a sudden she started to experience hair loss....and they do not know why. I feel sad for her. Us dealing with our hair loss....at least ours will grow back.

Anyways what an eventful way to end Chemo.

I have my Radiation appointment on the 23rd to begin the next steps.

Best of luck to all.......and follow the doctors directions no matter how simple it sounds. I say this because I did play with the idea of not calling when I first began to run my fever. But glad I followed directions of my Oncology team.

Denise/Onehalf

Deeg-

Kaiser sends you to a "Chemo" class before you start treatments. At this class there was strong warnings about developing a fever, especially a week and half after treatment (which is where I was). I guess this is a very crectical period.  I heard the information, but just put in the back of my head....then when I had the fever come, I was still really not paying attention. But after what I just went through.....days in the hospital, being on IV and being injected with so much....being in an isolated room....with mask on everyone...All this because I went in with a low grade fever. Boy they are serious! Guess for the Oncology team knows what they are talking about. Guess I learned my lesson....to take more seriously the warnings.

Thank you Jill, that was very helpful...

Gotta go get ready for my rad. appointment. Everyone have a great day!

OK, Ladies - Radiation update.....

Was supposed to go for my "trial" and films yesterday, but the machine broke down... Gives a whole lot of confidence, eh ?

So, they scheduled the whole deal today - one appointment right into the other.   First part of the process was me laying on a table in all my shirtless glory with my hands holding onto a bar while the technicians moved me and shifted me into a very precise position.   The funny part was that I was supposed to act like "dead weight" and not help them when they shifted me.  This made me grateful that I did not gain even more weight than I did during chemo because these ladies were not much larger than me.   In the meantime, they start taking X-rays with this machine that is zooming around me.   In between shoots they are coming at me again with the Sharpie pen (this time Black and not Blue) and are marking me up again while removing some of the old ones with an alcohol based thing.   I now have a lovely array of black and blue Sharpie marks all over my chest and torso (complete with clear tape accessory).  But hey, not planning on wearing a strapless evening gown or a bathing suit any time soon - so not a big deal.    All this while my arms continued to be raised above my head.

They get through the x-rays and trial and then say, we are going to start your first treatment now.   My job was to hold REAL still.  The problem with this is that I had been in the same position for so long now that my arms are starting to cramp.   When they start the treatment, the machine moves to the left size of my right boob and starts making all kinds of noise.   I hear it make this noise twice and we were done.   None too soon because my arms by this time were starting to shake.   I could barely get them back down when they finally said to do that.   Now... this was an unusual day because they had to do the films, trial and treatment all the same day.  Normally, it appears the whole process will take about 5-10 minutes and I won't have the uncomfortable arm shaking thing. 

I managed to get a good time slot at the end of the work day (which was a huge relief).  Looks like I will be done around March 5-6, pending any unforseen things like... um... the machine breaking.  

They gave me a special cream to apply three times daily (over the WHOLE breast, they say), but not within four hours of treatment. 

Anyway, that is pretty much the update.   Hope everyone is doing well.

Jill

WOW Jill, you and the hubby can play connect the dots! LOL...... You will be done with the radiation the beginning of March I will be done with Chemo the end of March......I don't know how you held your arms like that for that long with that &*%$#! port in....ugh........that had to be uncomfortable, I applaud you for your bravery!!!!!!!!!!!!!  Had my 3rd Taxol this morning....once again, had the same mid level assistant, she still couldn't find the lumps.....sure can't wait to see the doc on the 12th......Just knowing that someone can't find them tickles me to death.......Could sure feel the ativan today..shooey, soon as she shot it in, I was ready to conk out, had to come home and take a 3 hour nap! LOL.............Did they mention doing any scans once you're all finished just to make sure?

Cruise 4 Life,  You were diagnosed a week before me.........while I've gone thru the chemo, did 4/ A/C's every other week and the taxol I wrote of above that I am on now.....after my last chemo, I am going in for my lumpectomy....why didn't or can't they do the SNB at the same time as the lumpectomy? Wouldn't that be easier? As for hair, I lost mine about the 15th or so day after starting A/C....started coming out in clumps, I went and got it cut short.....Actually in the back, I still have some short pieces right above my neck going across, could probably pull them in a pony tail...I never did shave mine........thought even if I get to keep ONE hair I am keeping it! LOL....eyebrows are still there, lashes are also, even though they are sparse.....The emend is a God Send, that and Zofran, I couldn't have lived without them during the A/C. The taxol is showing no side effects, oher than severly dry eyes and my heels are peeling....Haven't had to take the Neulasta shot either with it.........Secret-if the neulasta gives you bone pains, do this. The day before you get it, the day of and the day after take an otc Claritan (allergy pill) even a store brand will work, I never once got those bone pains.......... and as usual, DRINK LOTS OF WATER EVERYDAY........LOL....or you'll end up like me and have to go to the er for liquids!

Luv,hugs and prayers

Deb

Hallulujah, no more A/C

Finally we are free

No more feeling bad you see

Not for Snappygoddess and me!

_____________

LOL, sorry not a poet.....but glad to hear the A/C is done honey, i know how rough that is!

Luv, hugs and prayers

Deb