 |
11-19-2013, 02:17 PM
|
#1
|
|
Senior Member
Join Date: Apr 2012
Posts: 87
|
New mets for MJ :(
About 3 weeks ago my wife started showing signs of jaundice in her eyes and on her skin. They gave her a ct scan at the emergency room and determined that she had liver mets again as well as peritoneal carcinoma(malignant ascites). Has anyone been diagnosed with peritoneal carcinoma or know much about it?
Also, after her first treatment of Abraxane she got really bad sores in her mouth and wasn't eating or drinking much for several days. She developed a high fever so she went back to the emergency room. That put her in the hospital to try to hydrate her and treat her mouth sores, as well as to get her white cell count up. She tested positive for the flu and pneumonia so had to be treated for that as well. A week later she finally came home from the hospital. So, quite the ordeal. She is now able to eat and drink thanks to the mouth treatments at the hospital. I fear these will reappear after her next Abraxane treatment on Thursday. Does anyone know of anything to do to limit the mouth sores caused by chemo? I don't want her to go through that hospital experience again.
Thanks,
Greg
__________________
08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)
|
|
|
|
11-19-2013, 02:23 PM
|
#2
|
|
Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
|
Re: New mets for MJ :(
My chemo nurse always wanted the inside of my mouth to be
very cold during treatments ... she said it helped greatly to prevent
bad mouth sores. I sucked on popsicles or ice cubes during my
treatments.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
|
|
|
|
|
11-19-2013, 02:52 PM
|
#3
|
|
Senior Member
Join Date: Aug 2013
Location: Texas
Posts: 61
|
Re: New mets for MJ :(
My Oncologist told me to rinse and gargle with a mixture of water, salt and baking soda every 2-4 hrs and/or after I eat. I am not sure if it will help her but its done wonders for me. Its not the most pleasant thing but it certainly beats the alternative.
Praying for you and your wife.
__________________
Lovemyboy3
6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.
11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.
11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/
16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
|
|
|
|
|
11-19-2013, 03:38 PM
|
#4
|
|
Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
|
Re: New mets for MJ :(
MD Anderson in Houston treated my friend for peritoneal mesothelioma. She is doing great....real miracle. Call them.
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
|
|
|
|
|
11-19-2013, 04:17 PM
|
#5
|
|
Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
|
Re: New mets for MJ :(
Another thing to do is to eat yogurt but every now and then swish it around inside your mouth. You can also get plain yogurt and swish it around and spit it out.
Also, as said above, suck on ice cubes during the treatment and for the first 24 hours.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
|
|
|
|
|
11-19-2013, 04:54 PM
|
#6
|
|
Senior Member
Join Date: Oct 2013
Posts: 474
|
Re: New mets for MJ :(
Benadryl acts as a local anesthetic. That is why it is in anti-itch creams. I read in a pharmacy journal years ago that mixing Benadryl syrup (Diphenhydramine 12.5mg/5cc) with an equal portion of Maalox makes a pain relieving mouthwash. There is something called Magic Mouthwash for mouth sores but you will need a doctors prescription for this.
Paul
|
|
|
|
|
11-19-2013, 05:14 PM
|
#7
|
|
Senior Member
Join Date: Jun 2007
Posts: 2,210
|
Re: New mets for MJ :(
My cancer center prescribed Magic Mouthwash from their pharmacy
Hope she finds relief
Keep the faith
__________________
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
|
|
|
|
|
11-19-2013, 05:40 PM
|
#8
|
|
Senior Member
Join Date: Apr 2011
Posts: 403
|
Re: New mets for MJ :(
Sorry to hear about the new mets ! My insurance company has just approved me for perjeta my doctor prescribed it off label. Also Kadcyla seems to be a good drug for many with liver mets. Your wife will need to be on chemo again then the doctor will have a better idea how to treat her. Dont give up hope!
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
|
|
|
|
|
11-19-2013, 06:21 PM
|
#9
|
|
Senior Member
Join Date: Apr 2012
Posts: 183
|
Re: New mets for MJ :(
Dear Greg,
I would speak with your wife's oncologist about getting her on Perjeta and the Herceptin. I am kinda curious as to why they took her off the herceptin in the first place. I have had a good run with the perjeta and herceptin for awhile now. I am lucky. The oncologist should advocate for your wife to obtain the perjeta and since she has not been too heavily treated this should not be a problem. Magic mouthwash was prescribed for me during my chemo time. I wish I knew more about peritoneal carcinoma but I don't. Take good care. I know and my husband knows how hard this is.
Jackie
__________________
10/11 IBC Stage IV; 1 liver met 4.6 cm.
10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
|
|
|
|
|
11-19-2013, 07:10 PM
|
#10
|
|
Senior Member
Join Date: Apr 2012
Posts: 87
|
Re: New mets for MJ :(
Hi Jackie,
He took her off Herceptin after the Her2 mets to her uterus, cervix, fallopian tubes and nearby lymph nodes. It didn't appear to be offering any protection at that point. Perjeta is likely in the near future. Just hoping the Abraxane works on the liver mets soon. Maybe Herceptin will work again in combination with it. Thanks for your comment.
Greg
__________________
08/10 ~ Dx IBC, Her2+++ ER-/PR- Stage 4, mets to liver. Age 43.
08/10 ~ Began 12 weeks of Taxetere/Carboplatin/Herceptin tx
[10/10 ~ Scans show liver lesions are gone. NED!
11/10 ~ Ended chemo. Herceptin-only tx
01/11 ~ Mastectomy
03/11 ~ Radiation
07/11 ~ Reconstructive surgery
10/11 ~ PET/CT shows NED :)
01/12 ~ Malignant tumors found in uterus, cervix, fallopian tubes and lymph nodes. Dx as endometrial cancer. Stage III2c
02/12 ~Hysterectomy(all tumors removed). Back to NED.
02/12 ~ Final Herceptin treatment.
03/12 ~ Began Cisplatin/Adriamycin tx for endometrial cancer.
03/12 ~ Tumors dx her2 metastisis, not entdometrial cancer. Back to BC tx.
03/12 ~ CT scan shows NED. :)
04/12/~ Began Tykerb/Xeloda.
06/12 ~ Ended Xeloda. Continuing Tykerb. Still NED.
09/12 ~ PET/CT scans show NED. : )
04/13 ~ Rash on original breast biopsied as cancer.
05/13 ~ Surgery to remove skin and tissue around rash. Continue Tykerb.
06/13 ~ PET/CT scans show NED : )
11/13 ~ Jaundice eyes and skin. CT scan show mets to liver as well as peritoneal carcinomatosis with malignant ascites. Began Abraxane/Herceptin tx.
02/14 ~ CT scan shows NED. :)
|
|
|
|
|
11-20-2013, 06:59 AM
|
#11
|
|
Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
|
Re: New mets for MJ :(
My oncologist gave me a prescription for a liquid mouthwash bicorbonate - so the water and baking soda suggestion sounds good but the pharmacy may have something readymade for mouth sores due to chemo. I was told to gargle with it 6 times a day which I did at first but then went down to 3.
hope this gargle works
all the best
sarah
__________________
|
|
|
|
|
11-20-2013, 09:56 AM
|
#12
|
|
Senior Member
Join Date: May 2010
Posts: 184
|
Re: New mets for MJ :(
1 1/2 yrs ago I had ascites and when started abraxane had quick results from it. I drank LOTS of iced water every day, rinsed with Biotene mouthwash and used the water, salt and baking soda for mouth sores (it really works well but does taste awful). She could try eating soft foods including yogurt, cottage cheese, bread not toast. I puréed or cooked vegetables, soups etc. I had a childhood craving come back for cottage cheese and peaches that has happened twice now with treatment and disappears when done. Oh and nothing too hot to burn the mouth. My ascites left and I haven't had a problem since. Knock on wood. The abraxane is hard but I was able to tolerate it for over a year. She will fall into a routine for control of side effects and it becomes tolerable. You guys can do this. Good luck.
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
|
|
|
|
|
11-21-2013, 07:55 PM
|
#13
|
|
Senior Member
Join Date: Nov 2010
Posts: 393
|
Re: New mets for MJ :(
I think peritoneal carcinoma refers just to site of some mets. ascites is fluid related to cancers impact on liver. general cancer / medical terms. but the cancer is her2 , right ? so these her2 mets have progressed on taxanes like abraxane in past, and now on tyk/xel. Lorraines and many others have also. L. had mets in and all around liver. wiped out by kadcyla. lani's post talks about kadcyla and perjeta together being even better.that is latest , may not be an approved combo yet . kadcyla at least is the best appr. tx for aggressive metastatic her2
this slow fda needs a swift kick. every call all stage ivs can make to their Congressional reps about denial of perjeta to stage iv can't hurt.
|
|
|
|
|
11-23-2013, 03:44 PM
|
#14
|
|
Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
|
Re: New mets for MJ :(
I had Taxol, then Abraxane, in my first round of treatment. It did a dandy job on my liver mets. I'm so sorry MJ got so sick the first time. I hope you can control the mouth sores from now on.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 08:40 PM.
|
Linear Mode
