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Old 08-29-2007, 09:56 PM   #1
hutchibk
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I betting that you are sleepy from the benadryl - I found that I am a real light weight and couldn't do a drip or push (syringe) of beny... it hit my bloodstream too much, too fast, drip knocked me out for about 7-8 hours and a push (which was only done once, as I was a MESS from it) caused me to basically have an out of body experience, heart raced, became somewhat paralyzed, very shaky and RLS kicked in. I finally learned that I could take just a single dose (25mg) via pill and that was all I needed, and even that knocked me out in the chair...

Dehydration is just very normal with chemo - that is always one of my most noticable side effects. Opt for occasional bottles of electrolyte water or Gatorade for the first couple of days after an infusion.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 08-30-2007, 02:43 PM   #2
Cristina19
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It sounds like the Neulasta may the the biggest culprit in the "flu-like" symptoms that everyone is feeling on day 3 or 4. Is that possible? I'm feeling okay today, day 2.... perhaps "over-medicated," shaky and sleepy. Now I'm off for the Neulasta shot.
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Old 08-30-2007, 08:43 PM   #3
Melinda
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I used to get my Neulasta shot on a Friday and on Sunday... I was only good for reading the Sunday paper and watching movies... a real couch potato. The good news is that it kept my WBC up to where I could continue treatment the entire time as far as WBC goes. The carboplatin effects your platelets and on round 5 and 6 I had a slight delay... 2 days the first time and 5 days on round 6. There is nothing they can really do for platelets... just let the body build them up again. The first time I thought maybe if I went home and ate half of a cow it would help.... silly me, but the fellas (platelets rejuvemated themselves.) I tell you this because I am the type of person that wanted everything done yesterday... so to find out that there was going to be a delay shocked me and I was beyond annoyed. I didn't know this could h appen. Anyway, everything worked out fine.... becareful when platelets drop "do not run with scizzors".... bleeding and bruising are something one stays away from with this condition.
I made it thruogh to round 3 before my scalp really started to show... and that is when I decided to shave my head. It looked better than having the apperance of walking out of a nuclear power plant plus I felt more in control. Prior to that I wore it like in my picture, then shorter yet and then the GI JANE look. After that it was all over but the razor.
I got a wig from www.paulayoung.com
I dont care what they say... but for 49.95 you could not beat it. I wore it a couple of months before the heat set in and then switched to a varielty of scarves that complimented my wardrobe. FOr the last 6 weeks I have introduced the retirement village where I work to tennis ball hair... call me Wilson for short as one of our eloquent sisters have suggested. Actually I have had fun being free of scarves and wigs, and feel completely comfortable with it. Its the latest rage, and I am 55.
Keep in touch, you can do this. a positive attitude and a little humor helps and lets not forget all the support you have from all the sisters here!
Melinda
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DX BC 12/06
tumor .9
Lumpectomy 1/8
Mammosite radiation completed 2/10
Stage1/Grade 1
clear Margins /Nodes Neg
ER+
IHC +2 Fish +
ONCO 23
Started TCH on 3/2 for 6 rounds of TC once every three weels and a year of Herceptin every 3 weeks -
Finished everything and now on Aromasin
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Old 08-31-2007, 06:42 AM   #4
tousled1
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Glad you did well with your first treatment. The Neulasta shot can cause bone pain so don't be surprised if your bones start to hurt. The worst part of the treatment I found was the Decadron premed -- wired me up for days and then WHAM like walking into a brick wall. You'll do fine. Just make sure that you drink plenty of fluids.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 08-31-2007, 07:09 AM   #5
Gerri
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Cristina,

Best of luck to you as you start your journey. You are lucky enough to be receiving treatment at a wonderful cancer center. I too go to City of Hope and am so grateful for the care I received there. I did not receive TCH (I had AC/T, no heart problems) but do have a few suggestions for the Neulasta shot. They sting a lot less if the nurse warms it up by rubbing it between her hands and injecting it VERY slowly. You will find that not all of them will do this automatically. Once I learned the secret I didn't hesitate to ask for these things to be done. Take all the precautionary meds as prescribed - they will get you through the rough times.

Take good care.
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 09-02-2007, 08:29 PM   #6
harrie
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Hello Christina,
I had the exact same chemo meds as what you are taking. I started end of Jan and ended this past May, 6 rounds, 3 wks apart.
I didn't experience much nausea. Here are some of my side effects:
1. loss of hair on day 11
2. first round didn't hardly feel a thing, then they progressively got more intense as the toxins built up, peaking around round #4;
3. I got hyper-salivation which was something I could not find anything to get rid of and have found no one that experienced it like I did. Was wierd.
4. taste was totally warped for at least the first wk following tx.
5. I would get my tx on a Fri and would start feeling the effects on Sunday
6. side effects lasted about a wk and at the end of the 5 days to one wk, I could almost literally feel the side effects lift. Like a lifting fog;
7. My WBC and RBC were lowered. Took Nupogen for the WBC and something else for the RBC.
8. Nupogen, I had to take almost routinely because after the first tx, we knew my WBC was going to be effected. Only once did I get the bone ache and Advil took care of that nicely.
9. Decadron day prior to, day of and day after tx. This is to help prevent infections and allergic reactions. Also to prevent the "hand-foot syndrome".
10. The bottoms of my hands and feet would get REALLY red when exposed to heat. no sig discomfort though.
11. I did not miss a day of work throughout the TCH
12. I continued my exercise routines, modified.
13. Started doing yoga
14. Managed to keep my weight very much in check. I maybe gained a few lbs and the wt would really fluctuation + or - a couple of lbs.
15. Tired
16. Used Biotene toothpaste for my mouth. did not experience any sores at all.
17. I would get a mild case of muscular fatigue, mostly in my legs.

That is about all I can think of for now.
It has been just over 3 months post my last TCH tx. After the 2nd month I pretty much felt normal with my energy level and stamina.

If I can be of any help, let me know.
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 09-03-2007, 06:38 PM   #7
Jean
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Hi Christina,
Welcome to our beautiful site and I am sorry that you were dx. with bc.
But the good news is you found this support group. I have been away
on vacation and just returned....read your post.

By now you have received a lot of information on the TCH...it is doable.
Just take it one day at a time. Rest when you need it and don't fight
the fatigue when it hits. I am very active - so for me it was important
to accept the days when I needed to slow it down and even come to a
complete stop...get some great reading material...fun stuff to help pass
those days when you need to just lay around. For me two days after
treatment it would hit me and I needed two days to rebound. But
do exercise and push yourself in this area. It is important to move.
Even if it is just a short small walk, the fresh air and sun is good for
for you.

Do check on any supplements while on chemo....you DO NOT want
to counter effect the chemo in any way. This seems to be a big
issue during chemo. Check with your onc. and if he allows supplements
during treatment. Once I was completed with chemo and just on herceptin I then began a full routine of supplements.

The pre-meds are the hardest....they really wire you up. You could ask
your onc. for a mild sleeping pill to help you rest during the day before
day of and day after. Eat heathly and make your meals count.
If you have any questions please do not hesitiate to contact me.
One day at a time!

Will keep you in my prayers and sending you lots of hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 08-31-2007, 07:58 AM   #8
fauxgypsy
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Christina,
I recently finished 6 months of THC and am now on herceptin and Femara. I have always had my treatments in a recliner. Not too uncomfortable. What I have seen on this board is that while there are some similarities, everyone's response is somewhat different. I am self employed which helped because carboplatin knocked me down for several days. I tottered around like a little old lady for three or four days. I just went with the flow and did what I could. My husband called it carboflatten. Only had it once every four weeks, with the taxol and herceptin. I had them alone for two weeks and then a week off. I did not want to take the nausea meds, I didn't think I was sick enough and my insurance would not pay for the whole prescription for zofran, so I called myself saving it for when it got really bad. (my stepfather died of lung cancer, a year and a half ago and I know bad when I see it, he was so sick) When I talked with my doctor he prescribed Emend as well . It is great. Take the nausea meds , particularly with the carbo. They helped me with the way food tasted as well, particularly the Emend. After the first treatment nothing tasted or smelled right. I really didn't need them after the taxol and herceptin. The premeds I had were standard, I think, tylenol, bendryl, decadron, aloxi, zantac or pepcid and after I changed oncologist, ativan. The benedryl put me down for the count. By bedtime, though, I was wired. I tried sleeping pills, nothing seemed to work so finally I just learned to ride it out. It is a great time to catch up on your email, houskeeping, etc. When it wore off, I would nap and be better by the next evening. I decided once that I would get them to lower my dose of decadron and I payed for it.

I drank Danactive yogurt that is supposed to boost your immune system several times a week and I did not have many problems with dairrhea. My white blood count did not get low enough to need Neulasta ( I think from what I have seen it depends on your insurance whether you get that or not). I did have to have arinesp or procrit for my red cells (one oncologist used one , the other used another.) But my counts did not drop enough to prevent me from having chemo. My platelets got really low once but they picked back up. The whole experiece was not as bad as I had thought it would be, sort of like having the flu once a month and a small virus the other two weeks, Weak and achy. I am on herceptin and Femara now and I just had a mastectomy in August but so far I am having no side effects from them. I haven't completely gotten back to normal but I am regaining my stamina. I have started physical therapy because of the mastectomy, I have an impinged nerve. I think it helped that I always did as much as I could, not to the point of exhausting myself, but to keep my strength. I continued to do faux finishes up until the middle of June, worked in my studio, yard, garden (using gloves), always listening to my body and resting when I needed to. We canned bushels of tomatoes and made salsa, put corn and peas in the freezer.
They used to think that if you were on chemo you shouldn't do anything and then they figured out that that was why people were getting weak and losing muscle mass. When I was first diagnosed ( supposedly stage 4) the doctor suggested I should go on disability. I sat around and moped for a few days. I was getting depressed just thinking about it. Then I decided that I was going to keep my life, stage four or not. I started scheduling work again, again using common sense.

My hair and eyebrows, which never left completely started growing back even before Chemo had ended. Eyelahes are a little slower. It has been way too hot here for a wig so I just put on a hat or a do rag, McCalls has a pattern and they look really cool in a fun print. I occasionally put on eyebrows and eyeliner, but vanity is not my strong suit so a lot of times I didn't bother. If you need makeup, look up the Look Good , Feel Better program in your area. You should start with all new makeup when you start chemo. Sunscreen was important because with the carboplaten, the sun made me itch. I found a no-ad one that was 45 spf, made for babies. It was really good.
I guess what I am saying is that your life can go on. Only you will know what you can and can't do. But don't make it the focus of your life, keep the things that give you joy and a life outside this cancer. Stay as active as you can and learn as much as you can. Eat as healthy a diet as you can. I neither lost or gained weight during chemo and that is what you need to aim for. This is great place for you to be. ANd remember-
In the world of destiny, there are no statistics!

Leslie
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In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 08-31-2007, 08:06 AM   #9
Cristina19
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Thank you, ladies, for your presence here. I get myself to the computer first thing in the morning to get your wisdom. Your humor and strength is priceless.

Everything you've said is right on the mark. I'm not really feeling the Neulasta shot yet but I just got it yesterday. The nurse was great: she warmed it in her hands and gave it really slowly, just like you said, Gerri; perhaps we had the same nurse!

I have a newfound love for nurses. I know some can be less personable but every one I've been with at COH has treated me like their daughter/best friend/cute puppy. That kind of TLC is so wonderful.

The Decadron is something else. I need to clarify what I'm supposed to be taking because my perscription says 1 4mg tab in the am and another in the pm; my sheet from the doctor says to double it up the day of Neulasta. Yesterday night, I took two tabs as instructed and have felt jittery every since. I slept alright, waking every two hours or so, but went right back to sleep.

Melinda, I love your sense of humor. Thank you for reminding me to stay "up." As for the hair: it has been so hot in my neck of the woods, I was almost looking forward to cutting it all off last night! But, perhaps I'll just cut it shorter and shorter as you did (if the treatment will allow for it). I have shopped for a wig, and guess what, my head is big. (That sounds to bad!) So all of the average-sized wigs don't fit. I've got to shop for a "large-cap" wig which are harder to come by but I picked up a tlc catalogue from the American Cancer Society and they have sizes and pretty nice styles. I'll let everyone know the quality when I see it. The synthetic wigs don't look so bad I suspect; and, anyway, I'm probably going to be more comfortable in simple/cool headcoverings until it cools off here in Los Angeles.

xoxo,
cristina
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Old 08-31-2007, 08:25 AM   #10
Cristina19
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Leslie, I think I read a number of postings from you under the "sexy cancer" thread. I didn't see the program because I "fired" my cable a few years ago. Why pay tons of money for one good channel? So I'm left with 3 PBS channels, lots of foreign language, and bad-mainstream channels. Anyway, the "sexy cancer" thing: bad title. If I'm correct from your postings, I'm with you. There's nothing sexy about this disease. We hope that we can find our way back to confidence and sense of self through this.

I'm blessed that I have a very supportive family, co-workers, friends, and most of all, a good partner. He has given me so much reassurance. I found myself again after a nasty divorce two years ago and was blessed to have someone wonderful come into my life. He has never made me feel "less-than."

What we go through, though, is less about what other people think or see than what we see. I opted for a free-tram reconstruction (which is a doozie of a surgery) and found that my shock and emotional trauma didn't come from the lost breast but the lost tummy and belly-button that I knew as my own. I didn't have so much to "donate" to begin with and now I'm stretched tight as a board. I couldn't lie down or stand up straight for 3 weeks. Where did my normal, pretty contours go? The scars: someone in another post said, "I look like a patchwork quilt." I look like a rag-doll.

I'm hoping that as time goes by and I have my follow-up surgery, everything will look more "normal."

At 37, having felt as healthy as a horse, having come back around after other trials, this has been a blow. You all know this.

When people commiserate with me, I tell them always the same thing: When life hits you with something like this, you have two choices: you sink or swim. What choice do we really have?

Maybe that show should have been called "Crazy Cancer, Strong Women."

c.
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Old 08-31-2007, 02:07 PM   #11
Gerri
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Cristina,

Better check on the dosage for the Decadron - I never doubled the dose on the day I received Neulasta. As for the Neulasta, since you haven't noticed anything yet, you probably won't have a problem - I never did. If you are concerned about mouth sores, the pharmacy at COH makes its own concoction. You need an Rx from your onc to get it. I used it religiously morning and night and never got a mouth sore.

How far are you from Upland? I got my wig at a salon called 'Salon Mez A Me'. The owner (Jennifer Guerra) is wonderful and will do everything she can to fit you with the right wig. I paid about $170 for mine and wore it for almost 10 months. It looked great the entire time. Most people had no idea I was weraring a wig.

Like I said before, you are in great hands. I love COH and hope that someday I can pay back what they have given me.

Take care and STAY COOL!
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 08-31-2007, 03:56 PM   #12
Cristina19
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Gerri,

Thank you so much for the comments above. I confirmed with the nurses this morning that the "doubling up" on Decadron was NOT what the doctor ordered. I don't know why it was originally indicated on my medication schedule except that I was orignally scheduled to do AC-TH.

Anyway, no more of that! I have felt shaky ever since.

As for the Neulasta: I do feel a little achy in the joints and muscles seem warm. I hope it stays mild.

I'm going to try to do the Walk for Hope in October at COH. My "team" has a page if you're interested in walking!

C.
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Old 08-31-2007, 04:07 PM   #13
Gerri
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Cristina,

I am planning on doing the Walk for Hope in October. I did it last year and raised $2,300. I need to get things going for this year and see if I can raise money again. Let me know what your Team page is so I can take a look.

Gerri
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Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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Old 08-31-2007, 04:59 PM   #14
Cristina19
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My "Walk for Hope" page:

http://www.cityofhope.org/fundraisin...A'S%20TEAM
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Old 08-31-2007, 05:07 PM   #15
kcherub
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Cristina,

How are you feeling today?

Take care,
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Krista
Diagnosed 3/29/2007 @ age 34
Stage 1, Node Neg. (SNB), Grade 2, 1.4 cm. IDC
ER/PR 90%+ HER2 +
6 TCH started 5/25/2007, ended after #5 due to steroid "reactions" and neuropathy in feet and hands
BUT--#6 CH w/o Taxotere
Begin Herceptin alone 9/28/2007
30 rads completed 12/19/2007
Finish Herceptin 5/9/2008
Stopped Tamoxifen early--HATED it.
Married 17 years
13-year old son
3 embies on ice (from 1999)
GA, USA

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Old 08-31-2007, 06:34 PM   #16
Cristina19
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Krista,

Hello! Thank you for asking. I feel a little achy today in the joints and a little sleepy and my muscles feel a little sore. So far, it's only a "little" everywhere. I hope it stays mild. I was actually tempted to go to the pool for a light dog-paddle. It sounded like a nice idea for the aches. Anyone out there try a little swimming, yoga or walking to alleviate symptoms?

I read your bio above and see that we have a very similar diagnosis. Young age, Stage 1, etc. I will look forward to hearing about your journey. Apparently, the doctors have received results from my genetic testing but I have to go in for an appointment. Uggg! Another appointment in this 100+ humid weather!

I have never had children. I thought it would happen someday but it doesn't seem to be in the cards. I went through an unpleasant divorce in 2004 and have since met the most wonderful man. I just don't see babies in the future after Tamoxifen.

I suspect that these issues have come up in the various threads.... I wonder what it will be like and how it will effect my life/body/relationship to be pushed into menopause, perhaps permanently.

I tend to go to the "worst case scenario," so I'm always eager to hear the experiences of others.

Best,
C.
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Old 08-31-2007, 06:39 PM   #17
Cristina19
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By the way, what kind of steroid dosage were you on? I am only to take Decadron (4 mg), twice a day, the day before, the day of, and the day after chemo.

Also, did you see the recommendation for Glutamine in one of the above posts? I did a little research and see that there have been some studies of the supplement given during chemo treatments to help against neuropathy.
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Old 08-31-2007, 06:57 PM   #18
BonnieR
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Christina, good hearing from you..
regarding the Glutamine, my research, including the ACS, indicates that the recommened dose is 10 Gm three times a day for about 4 days after chemo. But it is always best to check with your onc. They all seem to do things a little differently.
for instance I am not receiving Decadron except for what is given in my infusion. I guess my blood count is still okay because I am not receiving any other meds yet...
Janet, you are right about the Biotene. I am having mouth sores but my treatment center/onc staff only could recommend salt water gargle. They seemed unfamiliar with anything else. What is the concoction that COH mixes??? I should check with the pharmacy at the cancer center...
The physical therapist told me that swimming was always a safe and recommended exercise for us....yoga too. I hear of people who attend throughout treatment. But again, get clearance. I am sure people with more experience will reply to your questions...
Keep the faith...

ETA: off topic, but KCHERUB, is that the little boy you mentioned in another thread who used the term "laughingstock"?? LOL
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 08-31-2007, 07:17 PM   #19
tousled1
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If you use the Biotene toothpaste and mouthwash you shouldn't be plagued with any mouth sores. It's much easier to take precautions not to get the mouth sores than to deal with them when they happen. I you get mouth sores your oncologist can give you a prescription for "magic mouthwash." For the neuropathy you should tale Glucosamine/Chondroitan complex - sodium free. You'll notice a difference in about a week of starting it.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 08-31-2007, 07:34 PM   #20
Gerri
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Cristina,

I go for genetic counseling at COH on Sept 24. My goal this weekend is to stay in the air conditioning and do the dreaded paperwork. Were you able to supply a lot of information? I have bits and pieces but not an extensive background on all of the family members. It would seem that all of that information plays a major role in deciding on whether or not to test. Did you find that to be true?

Good luck with your results. I hope it is good news.

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Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
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