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Old 10-08-2017, 08:31 AM   #1
Joan M
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Decisions, decisions

I'm trying to decide whether to take a break from Herceptin or put in another port.

My port was removed in 2006 after my treatment for stage 2 breast cancer (ER-/PR-/HER2+), and then six months later the cancer returned to my lung with the same pathology. Ditto for my brain met in 2008.

I've now been NED for 9 years, but my "good" arm seems like it can't take another infusion.

The problem most likely has to do with using one arm for 10 years but also because of an excision made in the upper part of that arm to remove a melanoma in February 2016. The surgery also included a sentinel lymph node biopsy. The two nodes did not have any melanoma cells.

Although the mole on my arm was tiny (and I have many such moles all over), I can say only that I want to know which shark bit me, since I have a huge indentation in my arm. After that surgery I've noticed slight swelling in my fingers and also around the incision.

I think that it's now time for another port, although I don't know whether it can be placed on the same side. Or perhaps to take a break from Herceptin.

In January, my breast oncologist did a Guardant Health 360 gene sequencing test to look for mutations (I believe the test looks at 70 genes). The test found that I have mutations in four p53 subvariants. No other mutations, including no HER2. When normal, p53 acts mostly as a tumor suppressor gene, and I believe it is the most common cancer mutation, mutated in 40% of cancers.
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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 January 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 October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
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Old 10-10-2017, 09:37 AM   #2
MaineRottweilers
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Re: Decisions, decisions

Hi, Joan.

Ten years using the same arm, ten years! You give me hope.

I got my second port placed, more or less in the exact same spot as my first port. My surgeon was a little squeamish about doing so, cited infection and scarring risks etc. I put on some pressure and he did as requested. He used the same incision area so no additional scar was added to my check but I did end up with a teeny tiny new scar on my neck (I have an IJ port). I have not regretted re-porting. Now, about those ten years....tell me your secret. <3
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!

//
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Old 10-10-2017, 01:18 PM   #3
Joan M
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Re: Decisions, decisions

Thanks, Tracy. I know of another women being treated at Fred Hutch in Seattle, where they tried to put a port back in at the same location but it didn't work. She had to have it inserted on the other side. But it's good to know that it could work. And thanks for the tip about a potentially "squeamish" surgeon, which is what I could expect.

My onc said that the port is usually placed on side opposite the surgery side, which is where my port was. I have another appointment with him in two weeks to discuss further.

I wish that I had a secret! I used local procedures along with systemic therapy from the get-go, and perhaps that's part of it, as well as maybe my own immune system. I thing we wish we all knew what makes each of us tick with MBC.

Joan <3
__________________
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 January 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 October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
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Old 10-14-2017, 06:51 AM   #4
Jean
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Re: Decisions, decisions

Joan and Tracey,
I don't know anything about ports - had my treatment via my arm (like Joan)
only Joan apparently has a golden arm, LOL.

I just wanted to wish both of you well with your new ports.
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 10-14-2017, 12:40 PM   #5
Joan M
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Re: Decisions, decisions

Hi Jean,

And now I practically have a bum arm. "Happiness" doesn't last forever.

Great to hear that you're doing well!

Best,
Joan
__________________
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 January 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 October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
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Old 10-14-2017, 02:22 PM   #6
Becky
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Re: Decisions, decisions

Dear Joan

Howdy there. Do you come my way anymore? I would love to catch up with you.
__________________
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
Zometa every 6 months for osteopenia

NED 13 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"
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Old 10-14-2017, 06:14 PM   #7
Laurel
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Re: Decisions, decisions

Hey there, Joan! Nice to hear from you. I am wondering about the wisdom of taking a break from Herceptin when you have been so stable. I think of Flori (SoCalGal) who took a break a few years back after years of stability with negative results. PM her if you do not recall the details or read her posts from perhaps 4 years ago (if memory serves, which frankly it rarely does!).

I honestly do not know about the port issue except that to do infusions without it is so hard on the veins. Why not consider a metiport this time?

I wish you luck with whatever decision you make. Please let us know what you determine!
__________________


Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
9 Years NED
I think I just might hang around awhile....

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Old 10-14-2017, 07:00 PM   #8
sassy
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Re: Decisions, decisions

Good to hear from all you girls! No advice Joan, but best wishes.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
12 YEARS NED!
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Old 10-14-2017, 07:13 PM   #9
Laurel
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Re: Decisions, decisions

Hey there, Rhonda!

Don't want to hijack Joan's thread, but glad to see your post! How are your legs these days? Haven't heard from you in ages!
__________________


Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
9 Years NED
I think I just might hang around awhile....

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Old 10-14-2017, 11:56 PM   #10
Pamelamary
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Re: Decisions, decisions

Joan, I am only 5 1/2 years down the MBC track, but haven't considered dropping the Herceptin. After 4 years of mucking around with wonky veins, my first port is doing wonderfully. Still hate it though!
Best wishes..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
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Old 10-15-2017, 09:20 AM   #11
Joan M
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Re: Decisions, decisions

Hi Becky,

That I do. In fact, I left my place of birth about 4 years ago and moved just across the river and down the road a piece. But I'm still being treated in NYC and go back and forth all the time, taking advantage of the arrangement to visit with family and friends on that day.

Hello, to Sassy and Laurel. Good to hear from you, too. And, Laurel, thanks for your input about the mediport and Flori. I spoke with Flori many years ago. I would agree somewhat with why mess with something that's working. I think that sometimes someone like Steph and AndiBB can go off of Herceptin (and I know a few others) and do well, which makes it tempting. ...But I also know of a few women where the cancer came back.

The port decision is a tough one, and like you Pamelamary, I hated my original port!

Joan
__________________
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 January 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 October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
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Old 10-27-2017, 01:03 PM   #12
Joan M
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Re: Decisions, decisions

Hello, again, ladies,

Just an update on my treatment. I've decided to take a 3-month break and try to sort out whether I'm having heart issues.

I often feel out of breath at the least provocation, such as climbing 10 or more steps or walking up hill, for instance. But perhaps I'm just out of shape.

If all seems well with my heart, I'll then decide on discontinuing.

One step at at time . . .

Joan
__________________
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 January 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 October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
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Old 10-28-2017, 02:15 AM   #13
StephN
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Wink Re: Decisions, decisions

Hi there.
Nice to see you have taken a step in your decision process. That is how I started on my path off my beloved vitamin H - had a port problem and decided to take a little "Herceptin holiday."

I think I mentioned that I did feel better and have a bit more energy once I was off it for a period of time. And I have not seen any studies on heart issues with long-term users of Herceptin. There actually may not be any such study yet.

Let us know how you are feeling.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and half of 2017. Boring ...
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Old 10-28-2017, 09:40 AM   #14
Joan M
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Re: Decisions, decisions

Thanks, Steph, for your reply. It will be interesting to see how well I feel now that I've stopped H.

One of my concerns is about a mutation that was discovered with my Guardant Health 360 liquid biopsy for breast cancer. I mentioned the test above. It was free through Medicare.

My assay showed four sub-variations of TP53 (same as p53), which I compared to the recently released data from the MBC Project.

That project showed the occurrence of TP53 sub-variants. The variant R273C was shown, but not the variant I have, which is R273H. None of my other three TP53 sub-variations were shown in the MBC Project data.

TP53 was at the top of the list of mutations in the MBC Project data, followed by PIK3CA, as having the most mutations. TP53 is a tumor suppressor gene under normal circumstances, and when mutated it can lose that function.

However, in looking into it further online, I found that both of the sub-variations noted are actually gain-of-function mutations, meaning that they actively PROMOTE cancer development, not just lose the ability to suppress the development of tumors.

I had no other mutations or alterations, such as HER2, PI3KCA, mTOR, etc., which are normally associated with breast cancer.

Joan
__________________
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 January 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 October 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy October 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood February 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity. No cancer, only fungus. Still continuing on only Herceptin. Guardant Health liquid biopsy in February 2016 showed four types of mutations in TP53. NED for 9 years. Living with MBC for 10 years. Praying for NED forever!!
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