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Old 09-02-2009, 03:54 PM   #1
hezzy
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Join Date: Aug 2009
Location: Paxton, Ill
Posts: 32
needing advice

It has been a rough few weeks. I keep hearing that Im holding up well and my stamina is excellent which is all great, but ugh Im just ugh ...
They did WBR in the morning, and hit the vertbra than in the afternoon would hit target more on each brain met. They said it will be six weeks before they know anything .... six weeks feels like forever already. I'm still getting rads to vertbra til Tuesday.
There keeping me on Herceptin every three weeks and than on the 13th I'll be starting Xeloda. They said that is something your take everyday pill form for two weeks on than one week off. That it passes the BBB and targets vertbra too.
I have hardly slept, the steriods (dexamethasone)are driving me nuts because my face, neck, ankles, arms, feet are all swollen and tight. They had me taking it four times a day and now I'm taking it three times a day. Last night I actually slept for 4hrs without waking up wide awake it felt great. They told me it will be weeks before they can fully take me off the steriods.

They had given me morphine at the hospital when the pain came. Which is weird because the pain was in my ankles, and knees yet the cancer was in the vertbra. They told me I needed to take morphine every four hours .... the new ONC that I have told me to take the 12hr one and if I have anymore pain than to take four hour one, but if Im not having severe pain I didn't even need to take it ... so I've slowed that down.

Than to top it off my ears started to drain, and they said I have weezing they were worried about infection but I dont have one they still gave me something amox/clauv to make sure it doesn't turn into an infection. My throat hurts and Im not sure if its from the steriod making it tight or what it is. I have to take it with food and its a pain w/ throat hurting. It seems if I eat something cold Im alright but eating warm food is different
My taste buds are gone, throat hurts, everything is tight, Im still pushing liquids and eating , I feel like I should be having more stools but when I go it doesn't seem like ... I think I need disposits. Is this stuff normal ??? They said these are normal side effects to radiation but Ive never heard of this before.
Anyone with ideas or help ? Im shouldn't be complaining because they're saying that Im doing well but all these little things are I don't even know. Anyone have any advice I need it BAD

They told me that Im doing great and their shocked how well my stamina and how great Im doing. I don't feel like Im doing great I feel like Im losing it .... I need any advice ANY ??
__________________
-July 07 - DX w/ICD stage 3a, est+, her2+
- started a/c four doses
-Aug 07 -DX w/ bone mets to shoulder and rib 10 days rads
- 6 mths taxol
-6 mths abrexene
- Nov 07 started herceptin still on
- was on tamoxifin wasn't working, gettin something new soon


Aug 09
- brain mets
- 3 tumors
- highest being 4cm large
- others under 2cm
- WBR rads in morning, than afternoon hitting each one direct
- rads to vertebrate

- Sept 09
- getting ready to start Xeloda
- continue herceptin
- just finished w/ rads on brain mets, and vertebrate

(think im doing this right now)
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Old 09-02-2009, 04:35 PM   #2
Jackie07
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Re: needing advice

Hezzy,

You do seem to be doing great! Your thoughts are clear, organization is good - which shows that none of the tumors inside your brain had affected your cognitive ability. And that is wonderful news!

Several of our long-term survivors have beat brain mets. With modern technology and new treatment method, we can be very optimistic about your getting a good result.

You seem to have plenty of endorphin (happy hormone) that goes with positive thinking and better immune ability. Keep it up and we'll be waiting for your good report several weeks from now.
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Last edited by Jackie07; 03-27-2011 at 12:18 PM..
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Old 09-02-2009, 09:58 PM   #3
Joan M
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Re: needing advice

Hezzy,

You're really going through a lot. Try to relax as much as possible and let your body rest. Hopefully you can get off Decadron soon. When I had brain surgery, the steriod was the worse part. But since I had one nodule, the rads doc did not give me Decadron during my five shots of radiation. Perhaps the morphine will counteract the steroid's effects.

You are holding up very well considering the radiation to the brain and the verteba. You're a trooper.

I'm sending you big hugs to feel better soon.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 09-03-2009, 09:48 AM   #4
suzan w
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Re: needing advice

Hi Hezzy, sounds like A/C to me...phew, it gave me a rough ride too. I had everything that you describe, and then some (I won't go into detail!!!). The steroids were awful, just as you described! I used a mouthwash called Biotin, it was very soothing for the mouth sores. Your taste buds will recover!!! I could not stand the taste of anything sweet. Seemed like my mouth always had a metallic taste. It took a long time for all the side effects to go away, but they eventually DID!!! Hang in there!!! XO Suzan
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
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8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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