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Old 09-20-2008, 10:23 AM   #1
theresaw
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Angry When will I feel normal again??????

Hi Ladies,
I have been cancer free now for 1 1/2 yrs. My last herceptin was a yr ago. Here's the thing...it seems like I have not regained my full strength, or mental capacity. I had to take a week last week from work because I was totally drained...I was more weak than fatigued. This has been happening for at least a yr. My onc and my primary dr keep telling me that I am still having chemo effects and that it takes some people longer to feel their pre-cancer self. I am so tired of hearing that..it makes me so angry! Has anyone else felt this way? I have had my blood check, a mri and everything says clear...
Thanks for listening...just needed to vent a little.
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Diagnosis bc june,2006.
3months of taxol and herceptin, nupregin shots weekly. Now herceptin only, her2 positive. stage III. Left breast, mastectomy with reconstrutive surgery.
Herceptin until 10/06. Due to low echogram numbers had to stop Herceptin indefinetly.
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Old 09-20-2008, 11:29 AM   #2
AlaskaAngel
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Hi Theresaw,

I was 51 at time of treatment and feeling great until then. Before I did treatment I thought I would recover pretty fast because I've always been active and healthy. But the steroids that are given with treatment cause some muscle damage, and when we add that to just not being as active for months at a time, and then add in any weight gain we've had, we end up with a lot less ability to recover. In addition, my blood counts were on the high end of normal prior to treatment, but since treatment they have hovered just below normal. Those things do make a real difference.

It took over 2 years after treatment for me to start feeling better.

Also -- your signature indicates a problem with your ejection fraction, and if it is still low, that can make you feel less strong since your heart is less strong. Do you know what your echo EF is now?

AlaskaAngel
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Old 09-20-2008, 11:43 AM   #3
theresaw
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Hi AlaskaAngel,
They have not changed. I had an echogram about 2months ago and from what my onc said they are still the same which means my heart is not where it should be. Thanks for your reply
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Diagnosis bc june,2006.
3months of taxol and herceptin, nupregin shots weekly. Now herceptin only, her2 positive. stage III. Left breast, mastectomy with reconstrutive surgery.
Herceptin until 10/06. Due to low echogram numbers had to stop Herceptin indefinetly.
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Old 09-20-2008, 11:56 AM   #4
BonnieR
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I wondered that about your echo numbers too.
I guess at some level we need to think in terms of "the new normal". At least for the time being. Recovery seems to take longer than we would like and things may never be the "same."
You are certainly not alone in how you feel. At least it helps to know we have company and people here who understand.
Keep the faith.
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Bonnie

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 09-20-2008, 12:02 PM   #5
AlaskaAngel
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try this

A suggestion.... If you aren't taking CoQ10, give it some thought. Best to start with a low dose and gradually work up.

Hugs,

A.A.
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Old 09-20-2008, 04:12 PM   #6
Sherryg683
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I was in pretty good physical condition before chemo almost 3 years ago, and only in the last year have I felt almost back to normal...that's almost. I still have chemo brain. I had an outbreak of shingles that lasted 8 months after chemo, so that effected me also, I was in terrible pain during that time. . All and all, it took over around 2 years for me physically to feel OK. I still do herceptin and feel bad on days after that . It takes awhile .try doing some low impact exercising like swimming to help with energy that helped me quite a bit...sherryg683
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!

Last edited by Sherryg683; 09-20-2008 at 06:16 PM..
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Old 09-20-2008, 08:19 PM   #7
Barbara2
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Co Q-10

I was also going to suggest Co Q-10 for your heart. I began taking it when starting Herceptin in May 2005, and am still taking it. I take 100 mg twice daily.

As for the fatigue, I thought I would never feel normal again. (I was 52 yrs at diagnosis.) During the first 2 years, I would occasionally have a "normal" feeling day, for which I was so thankful, because they were few and far between.

Over time I got stronger and stronger, but it took quite a while. I took Ativan for about the first year and a half (I liked the good night's sleep it provided), and finally figured out that I was addicted to it which was causing big time side effects, like feeling lousy and brain fog! After I shook that off, I started feeling better.

My post cancer blood work has not been like it was before chemo.

I think it is important to get as much rest/sleep as you need. Before cancer I slept about 4-6 hours and now it is more like 6-8 hours, and I'm actually in bed for about 9 hours or more.

I'm not working any more which has made a big difference in the stress levels.

Chemo brain was quite severe at first. Still is a factor somewhat. I'm not sure if I'm just getting used to the new me, or if my brian is improving. I recently asked my onc about it; he said chemo can have a lasting impact on the brain. He didn't elaborate, but he sounded definate.

Try to be patient; over time you should continue to gradually (almost) feel like your old self again.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 09-20-2008, 10:51 PM   #8
Catherine
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it takes time

Teresa,

I think it takes a long time to regain our strength. I have had to pace myself. When I do not get my rest, I hit a wall. I do not have the stamina that I had before DX. However, I do know that I am getting stronger. I used to try and get stronger every week. Now I have lowered my sights to getting stronger every month or so. Keep eating the right food, getting as much rest and exercise as you can and do not over do. I am very social, and have even had to cut back on lunches and little get togethers, just so I could have some down time to rejuvenate at home where it is quiet. I am almost 2 and 1/2 years out from Dx and I can say that I feel really good. But if I overdo, my body and my brain tell me, and I have to listen. Not sure about the heart thing....the other ladies gave you good advice I am sure.

Hugs, Catherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 09-21-2008, 06:30 AM   #9
Jean
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It does take time....remember you are unique and your body will respond on its own time line.

Be patient and kind to yourself.
Also: If you are not already doing this try small walks
and build them up slowly...walking is a wonderful healer for the body and the mind. Try if you can to do the walking in an area that will be enjoyable, a park, a beach, or just an attractive area...that works just for you. Then after your walk - stretch your body and do deep breathing. The mind helps heal the body. Rid yourself of anyone or anything that is strongly negative.

Most of all come here often to know that others have felt this way also. We carry alot inside after being told we have bc and then treatments take their toll on our bodies. So we are attached by many levels physcially and mentally. Fear of recurrance lingers in the back of the mind also....this is truly a force that damages us.

Your tests and scans are showing good results....good for you...therefore, take each day and start slow with yourself....you will begin to gain your strength - you may not be 100% like your old self...I know now my joints are sore...due to the AI, but I do find that walking and exercise helps so much. Eat as healthy as you can but don't pressure yourself with that either.

Sending you all good wishes,
Jean
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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 09-21-2008, 09:16 AM   #10
theresaw
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Wink Thank You

Thank you all for your anwers. I think I am going to try that vitamin, I seen a coupon in the walgreens ad today.
I love you all so much!
__________________
Diagnosis bc june,2006.
3months of taxol and herceptin, nupregin shots weekly. Now herceptin only, her2 positive. stage III. Left breast, mastectomy with reconstrutive surgery.
Herceptin until 10/06. Due to low echogram numbers had to stop Herceptin indefinetly.
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Old 09-21-2008, 11:41 AM   #11
juanita
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you may just have to find a new normal. even 4 years later i'm not the same i was before. i made a new normal.
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 09-21-2008, 02:57 PM   #12
Gerri
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I'm still waiting...

I have the most trouble with my legs. They alternate between feeling like jello or at other times like lead. However, lately, I am feelilng a little less tired by the end of the day so I guess slowly I am gaining strength. I like Catherine's idea of being a little more patient with our bodies as they try to heal - small steps instead of expecting huge leaps.

Good luck Theresaw, I hope the CoQ10 does the trick for you! Let us know.
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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 09-21-2008, 05:47 PM   #13
Barbara2
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A llittle info about Co Q-10

What is CoQ10?

Other Names: Coenzyme Q10, Co Q10, Ubiquinone, Vitamin Q
CoQ10 is a naturally-occuring compound found in every cell in the body. CoQ10's alternate name, ubiquinone, comes from the word ubiquitous, which means "found everywhere."
CoQ10 plays a key role in producing energy in the mitochondria1, the part of a cell responsible for the production of energy in the form of ATP2. ( ATP makes your body go much like gasoline makes a car go.)
Why People Use CoQ10
  • Heart failure
  • Cardiomyopathy
  • Heart Attack Prevention and Recovery
  • High Blood Pressure
  • Diabetes
  • Gum Disease
  • Kidney Failure
  • Migraine
  • Counteract Prescription Drug Effects
  • Parkinson's disease
  • Weight loss
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 09-21-2008, 05:58 PM   #14
Linda
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Getting back to your old self

Hi:
Forgive me if I'm repeating what's already been listed, but some other suggestions of things that could be keeping you from full recovery:
Have you checked your thyroid levels?
Could you be depressed?
Can you exercise (slow at first)?
Everybody else has covered a lot. They say recovery takes the same amount of time you were in treatment, which for us stage 3ers is between a year and 15 months.
Take care
Linda
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