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Old 09-17-2012, 05:10 PM   #1
dearjilly
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New to stage 4, what do I do now?

Hi, this sucks that I'm writing this, but i got the news today that i have one single brain met. I can hardly see, and this is why i went to emergency on the weekend. Anyway, I see the surgeon tomorrow morning. My oncologist isn't in until Thursday, so I would like to ask your advice. What should I expect for treatment? Should I be asking for a specific drug? I'm feeling very lost and I'm reaching out to you guys to help me out a little for some guidance. Thanks my friends.
Jill xo
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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Old 09-17-2012, 05:31 PM   #2
NEDenise
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Re: New to stage 4, what do I do now?

Jill,
I'm only a few months ahead of you on the brain met journey. Here's the link to the thread I posted when I found out. Hope it helps.

http://her2support.org/vbulletin/sho...ght=Brain+Mets

If I can help, answer any of your questions...commiserate...just let me know. So far, it really hasn't been as bad as I expected. But, those first 24 hours were scary, very, very scary.

Take a deep breath, and just take one step at a time. You CAN do this!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-17-2012, 05:44 PM   #3
KDR
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Re: New to stage 4, what do I do now?

Hi, Jill,
I am sorry that you are in this position, that we all are. I do, however, have a different take on this whole process, journey, affliction. I don't quite believe in staging. You have not fallen off the cliff. Cancer in so many ways is a state of mind. (A side note: listened to an interview with a cancer survivor/beater who wrote "I Thought Of Sausage"...we have quite the same line of thought). I think the first thing you should do is relax and get to a place where fear, shock and discouragement are thrown aside, and forge ahead to your path of wellness. There are many here with many more years of experience than I, but I offer you my system of living because it works--for me. We will all be by your side--
Yours,
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 09-17-2012, 07:05 PM   #4
chrisy
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Re: New to stage 4, what do I do now?

As always, Karen has said it beautifully!

First, breathe. There are frequently many treatment options to deal with brain mets. You will probably consult with radiologists as well as the surgeon, to determine if a targeted radiation like gamma or cyber knife would be appropriate.

There are chemos as well as targeted her2 therapy (tykerb aka lapatinib) which can cross the blood brain barrier, and have been effective in holding brain mets at bay for many, including some members here.

One step at a time. Breathe.
Chris
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 09-17-2012, 07:30 PM   #5
Mandamoo
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Re: New to stage 4, what do I do now?

Karen and the others give you great words of wisdom. There are some fantastic stories of brain met success on here - I am sure you will be another.
Breathe and best wishes.
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 09-17-2012, 09:26 PM   #6
Pray
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Re: New to stage 4, what do I do now?

Dear Jill, I'm sorry I have no advice. Please know that you and your beautiful little family are in my prayers. Gods blessings to you.
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-18-2012, 03:25 AM   #7
JennyB
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Re: New to stage 4, what do I do now?

Jill,

I'm really sorry to hear your update I hope you get some help from Denise's link there was a whole wealth of info on her threads.

You are in my prayers. I too have a young family and I think this escalates our fear..... There is lots of help and treatment options out there make sure you find out everything so you are armed with knowledge and get a seat at the knowledge table.

Good Luck sending big hugs

Jenny x
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Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 09-18-2012, 08:09 PM   #8
suzan w
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Re: New to stage 4, what do I do now?

I, too, have no advice...sending peaceful healing thoughts your way. And I always believe in the .... breathe...breathe...breathe!
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Suzan W.
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
7/28/09 BRCA 1 negative BRCA2 POSITIVE
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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Old 09-20-2012, 01:26 PM   #9
dearjilly
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Re: New to stage 4, what do I do now?

Thank you so much my friends. I just loved reading all of your messages. It brings so much support and hope. The oncologist gave me a statistic life expectancy today, which I didn't ask for. I know that everyone is different and that Gamma knife is very successful, so I have to hang on to that. I'm going to LA tomorrow. I know it's risky, but I have Ellen tickets. Tune in September 26th!! I'll be in the audience busting a move.
I'm on the steroids, so that should reduce my swelling. Lets hope for no seizures. Fingers crossed.
Thanks for the link Denise. I read up and received a lot of knowledge. Did the doctors speak to you about Lapatinib? They said they wouldn't put me on it, unless there was something else going on in the rest of my body.
I am really hoping for a drug that will cross the brain blood barrier. I have hope.
Much love, Jill xo
__________________
[
Feb 2013 - NED
Mar 2013 - thought I had progression, watching brain.
April 2013 - GOT MARRIED!!!!
May 2013 - looks like no progression, but necrosis and bigger.
Oct-Dec 2013 - Avastin tx
Nov 2013 - MRI shows necrosis shrinkage!!!!
Jan 2014 - Lepto Mening. disease found
Feb 2014 - WBR
March - BLAHHHH
April 2014 - Liver mets found
April 2014 to present - Chemo again, whooohoo. Fun!
July 2014, scans look good.
Stay on Perjetand hercertin.
Nov. 2014 more lepto-mening disease more WBR.
Feb 2015 more lepto-mening disease in spine and neck. More radiation.
Start on TDM1 no more Perjeta stay on herceptin
March 2015 more radiation in my thoracic area, more lepto-meningial disease
April 2015 trying to walk again.
[/SIZE][/FONT]
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Old 09-20-2012, 04:42 PM   #10
NEDenise
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Re: New to stage 4, what do I do now?

Hi Jill,
Wow! Ellen! How cool is that!?!
I hope you enjoy your trip as much as humanly possible! Good for you!

The next steps on my journey are "chronicled" in the thread...

http://her2support.org/vbulletin/showthread.php?t=55451

And then...

http://her2support.org/vbulletin/showthread.php?t=55534

I hope those threads help you see just how do-able... and survive-able this can be. Steph, Brenda, Jessica...and others...are several years out from the same diagnosis you and I have. Let's plan on being like them!

Again...I hope you have a super fabulous trip!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-20-2012, 05:28 PM   #11
schoonder
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Re: New to stage 4, what do I do now?

Dearjilly,
To get medication around the blood/brain barrier problem, a possible approach could be to administer the Herceptin directly into central nervous system via an intrathecal or lumbar puncture, if oncologist is willing to go that route.

Ronpaule, a member of this Board, has discussed this particular subject at some level of detail. A search for those posts or possibly even sending an e-mail may provide you with more knowledge about this procedure.
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Old 09-20-2012, 07:45 PM   #12
pwiswell
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Re: New to stage 4, what do I do now?

Dearjilly, I am sorry to hear of your diagnosis. Try not to worry too much about the staging although I know how difficult that is. I started my journey with Her 2+ breast cancer when my children were 2 and 4. When they were 7 and 9 it metasized to my bones. This was 2009. I was on Herceptin for three years and just recently switched to Xeloda and Tykerb because the Herceptin was no longer working. My children are now 12 and 14 and I am still fighting and I continue to for many years to come. I am determined to raise my children and refuse to let this disease get the best of me. I get up each morning and thank the lord for allowing me to see another day. The best advice I can give is to take life one day at a time and enjoy your family. I don't think any doctor should give life expectancy because they can't possibly know. Only GOD has the answer to that. Keep fighting and trust your journey.
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Old 09-21-2012, 03:23 AM   #13
Jackie07
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Re: New to stage 4, what do I do now?

Dearjilly,

If you go the the 'Calling all stage IV Sisters' thread http://her2support.org/vbulletin/showthread.php?t=48453 , you will find quite a few Her2 sisters who are currently enjoying the NED (no evidence of disease) status after a brain mets diagnosis .

You can locate their stories by going to the 'Members List' or do a 'Search' with their registered name.

I remember similar shock when I was diagnosed with a (life-long)brain tumor 22 years ago and breast cancer 9 (and 5) years ago...
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