Genomic testing: Hi Ladies, I hope you... - SHARE Metastatic ...

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Genomic testing

SophSP
SophSP

Hi Ladies,

I hope you are all enjoying your weekend so far. I'm not doing anything groundbreaking today, just catching up on housework and tidying up. If anyone has any tips on how they motivate themselves to clean, please let me know, as I am not a natural!

I am gearing up for my hospital appointment on Monday for genomic testing. I mentioned it to my oncologist when I saw her in November and she said it's available for free on the NHS, and she put a referral in for me. So while I am excited, I am also trying not to get my hopes up. I basically just want to find out which mutation I have and to learn as much as I can about my particular disease. Am I strongly ER+? How much progesterone is in the mix? These are questions I am hoping will be answered. This will be my fourth biopsy, so I am not worried about that as I know what to expect. But it's the rest I am thinking about and what this could mean for me.

Has anyone else had genomic testing? What did you find out?

Sophie

88 Replies
oldestnewest

Hi Sophie,

I'm trying to get motivated to clean as well, I'm obviously procrastinating as I am on the computer now. Like you I want to learn more about the the type of cancer I have and I'm headed to the Dana Farber Cancer Institute on Wednesday for testing. Have you heard of Guardant 360?

xo Jade

SophSP
SophSP
in reply to Wintervt

Hi Jade,

I have done as much as I want to for one day! I hope you can get motivated to clean as well! No, I haven't heard of Guardant 360. I wish you well as you head off to the Dana Faber Cancer Institute.

Sophie

mariootsi
mariootsi
in reply to Wintervt

Jade, I hope you get some answers through your testing.

Wintervt
Wintervt
in reply to mariootsi

Thanks, I hope so.

xo Jade

Sophie

Where do they take the biopsie from? I have been looking into this too. My last

Scan a few weeks ago show the area in the bone had calcified- which is good. My original Breast tumour ER/P + was large but all removed so could use sample from it . Good luck with it x

SophSP
SophSP
in reply to Glas0824

Hi,

The doctors will be taking a biopsy from the primary tumour where it was taken from during the diagnostic stage. I am going to ask if they can drain it, but I doubt it. When I had my first breast biopsy performed the doctor who did it said some patients' tumours were drained during the biopsy. I would like that done too.

Sophie

They used my biopsy from when I was diagnosed. Did not need a new one.

Barbara

Good luck Sophie. I hope you get some answers!

SophSP
SophSP
in reply to mariootsi

Thank you, Marianne!

Sophie

Hi Sophie,

I have had genetic testing on both my normal cells and my breast cancer cells.

The testing of my normal cells did not reveal any mutations related to breast cancer. It did reveal a mutation (MUTYH) that is linked to colon, stomach, and small intestine cancer, but because it is recessive, I am at no greater risk and because my husband, who was also tested and did not have the mutation, our kids are not at risk.

The testing of my breast cancer cells revealed an FGFR mutation. Unfortunately, there hasn't been much progress towards targeting this mutation.

Hope things go well with your testing and I hope you get the answers you are looking for. The more information, the better.

Barbara

SophSP
SophSP
in reply to barbarac76

Hi Barbara,

Thanks for sharing your experience. I am interested to learn more about my disease and hopefully there will be new treatments that come along that will target whatever mutation I have.

Sophie

Best of luck Sophie.

Sandra

SophSP
SophSP
in reply to girlsptz

Thank you, Sandra.

Sophie

Hi Sophie

Cleaning!!!!

Are you mad....I never clean..when things get bad my husband does it and if the house is exceptionally bad I’ll make an attempt but very halfheartedly..fortunately we have wooden floors almost everywhere

so not much vacuuming involved

Now being serious...you’ve made me wonder about genome testing...it was never mentioned to me but I’m now interested so will mention this at my next appointment...the only thing that concerns me is if the test showed something that was not treatable with a different drug...then I would worry me more...tricky!!.. is ignorance bliss?

Barb xx

SophSP
SophSP
in reply to Barbteeth

Hi Barb,

In answer to your question, yes I think I must be mad! I think winter is getting to me, so I am feeling a need to "nest" and tidy up. I don't normally vacuum though, as it strains my back if I bend down too much. After I had done some housework I worked out, so the madness just continues!

My oncologist did not mention genome testing to me. I am the one who asked her about it and she told me about the doctor who is in charge of genome testing at a different hospital to the one where I am receiving treatment. I must admit I was surprised that she was on board and agreed to refer me for testing, so we shall see what comes of it. But I hadn't really thought of the possibility of being told I might not be treatable after my first line of treatment. So it looks like I am taking a chance on that. I'll post an update when I learn more, but from what I have read it will be months before I know the results.

Sophie

Barbteeth
Barbteeth
in reply to SophSP

Hi Sophie

Sorry I hope I didn’t put you off or worry you...it’s my negative/ pessimistic voice talking....it’s something I will definitely query though...I do know that my cancer is strongly oestrogen positive which suggests I should get a good response to hormone treatments but it wasn’t the case as ibrance/letrazole combo failed after 18 months so I don’t know what to think...guess nobody can predict anything with this disease

All the best

Barb xx

SophSP
SophSP
in reply to Barbteeth

Hi Barb,

There's no need to apologise! You have not put me off or made me second guess my decision. I just have this insatiable appetite to learn as much as I can about this disease and do all I can to help myself, and if that can help you and others too then that's even better. Genomic testing is free on the NHS, so you should hopefully have access to it where you are.

I am guessing I will continue to have a good response to hormone therapy, as my disease is also oestrogen driven. I will be interested to learn of the percentages though and maybe even find out how this all began. In the questionnaire I was given by the hospital I had to answer questions about when my periods started, my family members who have had cancer and how long I used birth control.

You're right that it is hard to predict what will happen with this disease. It's that uncertainty about the future that can be unsettling. I am hoping that genomic testing will open some doors and maybe make other treatment options available in future.

Let me know what your oncologist says. I hope you can get a referral through soon.

Sophie x

Jerseygirl45
Jerseygirl45
in reply to SophSP

My doctor said that Medicare will pay most of the test and she had me fill out financial paper for the rest.

I am having it done on 1.23.2020 and Medicare pays for it all if you have stage iv breast cancer:

"Medicare coverage of genetic services

Hereditary cancer genetic counseling and testing is covered by Medicare under certain conditions for people already diagnosed with cancer.* In 2019, Medicare implemented a new national policy indicating that the following criteria must be met to qualify for coverage of genetic testing.

The patient has:

recurrent, relapsed, refractory, metastatic, or advanced stage III or IV cancer; and,

not previously tested using the same genetic test for the same cancer diagnosis (repeat testing using the same genetic test is covered only when a new primary cancer diagnosis is made); and,

decided to seek further cancer treatment (e.g., chemotherapy)."

SophSP
SophSP
in reply to aamkearns

I'm glad you are able to get genomic testing done too. I hope you get some good results that will help map out what drugs may be helpful to you in future.

aamkearns
aamkearns
in reply to SophSP

My onco suggested I get it done ONLY bc a friend gave me a gift of one of those ancestry dna kits. I would recommend NEVER giving for a gift. To my shock at age 60 (or I will be on Friday) I discovered something I wish I never had. Both my parents are deceased. My mother died when I was four and my FATHER's mother then took me in bc as far as we knew, my mother had no relatives. My father left her before she died. She died when I was four and my PATERNAL grandmother took me in. So although I looked Puerto Rican, I was raised by the paternal side of the family but my father never even interacted with me even when I was being raised by his mother who then died when I was 6. I was then sent to live with my paternal grandmother's brother and his wife and he cut off all contact with my paternal side bc he was angry with them for allowing his elderly sister to raise me. So my father had to child support to them, for my education and medical. He died when I was about 32 but I never had any contact with him even though his mother took me in once she found out my mother had died and I was put into foster care. So I was raised the paternal side ONLY to discover I had NO IRISH in me and that my birth certificate father (I have his last name, since I never married) WAS NOT my biological father (I was born in 1960 out of wedlock and my Irish Catholic Grandmother forced my father to sign the b. certificate and marry my mother which lasted about two years before he left.)

Found out I am 38% European Jewish and that I have 3 1/2 siblings from the paternal side. Their father was 35, divorced from their mother when he got with my mother. I have three 1/2 adult nieces and nephews and apparently my mother had another child before me (again out of wedlock) which she gave up for adoption. So after being raised as an only sibling and being raised by the Irish Catholic side of the family, I found out I am NOT even Irish at all and that I have one 1/2 sibling (older) from my mother and three 1/2 siblings from my real biological father (now deceased also). Talk about a shocker. I have chosen that I do not wish to meet any of them.

We are just strangers with a shared parent. So because of this new ethnicity, she want me tested. Not sure what difference it makes if I am already stage iv, but since I am not paying for it, why not.

Ignorance is bliss. Wish I had never taken the dna test. Be careful...I was on a support forum board and there are loads and loads of people like me that found out secrets that people thought could be hidden forever.

Quite the year!

SophSP
SophSP
in reply to aamkearns

Hi,

I am so sorry. I don't really know what else to say. Finding out your father was not really your father must have come as a real shock to you.

Sophie

That had to be a shock to find out like that.

I also was given the test as a gift from my daughter. But I was looking for my biological family.

I was shocked at fifty yrs out to find out my father was not my biological father. But I was lucky enough to have had the greatest dad in the world. When I started asking questions of my mother's twin. Mom died when she was 63 her sister was 85 when I found out. She did not remember much about my bio father other than they were engaged to be married she was already pregnant. She met my father that raised me when he came home from world war2 fell in love he made the decision to sign my birth certificate raise me and asked my bio father to leave. They all agreed and I never knew.except I never felt part of the family. They had four children after me. I always felt different. People always said I was different. When I found out I was not so shocked. But the father I had always treated me special. I was lucky.

But since no one remembers his name I can't find anything. Thought a sibling may match me some day on twenty three and me who knows.

ButI do know how you feel. Never told anyone this story and here I tell a stranger. It feels good to say it and not feel crazy.

Thanks for that.

Barbara

Barbara what an amazing story. I hope sharing it takes a big load of your mind. I can't imagine carrying that inside all that time. Thanks for sharing. I am sorry your search for your biological father has not been closed.

Sandra

Jerseygirl45
Jerseygirl45
in reply to SophSP

Sophie

I had my results at the next visit that was a month. But I think she had it sooner and was working on a plan. When I saw her she all the results ther and her plan ready.

I will have a pet scan also on Jan 22.

Barbara

SophSP
SophSP
in reply to Jerseygirl45

Hi Barbara,

I'm glad you have financial assistance to help cover the cost of the genomic testing. It's also good news that you got your results so quickly. It took me five weeks just to get a referral (there was a hold-up, so I called the hospital to chase it) and then I was told it could take 12 weeks for the results, if any come through. I don't know what would happen if there are no results to show, but we shall see.

All the best for your PET CT scan. Let's hope it shows a marked improvement for you.

Sophie x

Barb

That is how I feel. If it does not work what happens to me. It is telling us only two meds will help. Very depressing. Do they stop treatment?

Barbara

I had the testing done and mine came back PIK3CB and mTOR. I was on Ibrance and Faslodex for 18 months when it stopped working. Thats when they did the testing with foundation one. They put me on Afinitor and Aromasin 3 months ago. I get my PET scan on January 13th to see if this combo is working. Will get results on the 14th. I am a bit nervous because I am approaching my 5 year mark with stage 4.

Let us know what you find out.

Robin

SophSP
SophSP
in reply to Lovemylakie

Hi Robin,

That's interesting. Thanks for letting me know how the genomic testing has helped you. So it sounds like your oncologist was able to tailor your treatment to match your mutations. I hope you get some good results on the 14th. It's always a worry, isn't it? I don't think I will ever find it easy getting results. I hope you continue to do well. Five years is a good achievement. Here's to the next five, and then ten, twenty...

Sophie x

Lovemylakie
Lovemylakie
in reply to SophSP

Thank you Sophie

SophSP
SophSP
in reply to Lovemylakie

You're welcome, Robin.

Sophie

Robin

How did your petscan go? Is the Afinitor working. If they put you on Afinitor due to the genomic testing maybe you have some of the same mutations as me.

Had my pet scan we'd waiting for results.

I am on 31/2 yrs

Barbara

Scan showed no change so staying on the Afinitor and Aromasin. Will get another scan in April. These scans really scare me now because when this treatment stops working I will probably go on infusion chemo and that will be my last option. This is such a head game for me now.

How are you doing? I am in Oklahoma leaving today, my friend who lives in England is here visiting so I flew in to see her. I have to fly through Chicago to get back to indianapolis and they are having snow. Hopefully I won't have any delays.

Have a great day.

Robin

How long have you been on Afinitor because my radiologist said it is a good one.

I see the results on my chart but need to go over with my oncologist. It looks like some better some changed like last one. But it seems maybe it spread to my liver and I checked it on google treatment is chemotherapy so I am on that already. Let's hope it works.

Barbara

I have been on this treatment 4 months. My gene mutations are PIC3CB and mTOR. Wishing you well on your treatment. If and when I go on infusion chemo I don't know which one.

Robin

Hi Sophie! I'll venture a response to both of your questions... :)

Re: cleaning, which I think was a serious question, but am not sure :) ...messiness mucks with my state of mind, so I have found ways to get motivated, which is difficult, because I'm pretty sure I have ADD, etc. But, what I do to deal with untidiness that's run amok is decide to just put "x" number of things back in their place each time I...go to the fridge...go to the "loo"...whatever. That's a minimum, so oftentimes I'll do 2 or 3 times as much just from momentum. Or I'll put away things of a certain color. Or category. It might sound nutty but it works for me. Next thing I know, I'm down to the dribs/drabs and either just finish them off or toss them in a basket. :)

Re: actual cleaning, I'll set a goal on a manageable chunk...e.g. all horizontal surfaces. Part of the kitchen. The guest room, which is easy and gratifying. Great smelling products help motivate. Or I'll do what my cleaning person does at my rental property which is to methodically start, top to bottom, doing anything on the floors last. With this method, you can stop at any time and not regress...Music, preferably LOUD, can be helpful, which helps you move plus sends a solid passive-aggressive message to any quasi-adults in the household who are not helping! :)

Re: genomic testing, I did Foundation One about 5 years ago, when first dx metastatic. It revealed a PI3K mutation, which is very common in hormone receptive BC. There are now drugs to deal specifically w/ this....I don't remember the name (maybe Piquray?), and I don't remember the stats, but I DO remember being really impressed by the duration of "progression free survival" as a second or third-line treatment. So I take comfort from knowing that this is in my "arsenal" when I need it! :)

Wishing you a clean house (!) and actionable results from the testing! :)

Lynn

SophSP
SophSP
in reply to LynnFish

Hi Lynn,

I like your strategy. It sounds like it works for you. I find that there are only three things that motivate me to clean: knowing someone is coming over, putting on music and setting the timer on my phone. I set it for 20 minutes and in that time I set myself the goal of accomplishing whatever needs doing, whether that is the dishes, mopping the floor, folding and putting clothes away, or clearing off the table. So I might do a random amount of tasks in that time, or be more methodical and start on one side of the room and work my way to the other end. Then when the timer goes off (time always flies when I use this method) then I reset the alarm. But if I were to just aimlessly clean I would soon get bored or get sidetracked. I think another thing to do is find a compromise with my husband. I like to have bunches of flowers and framed pictures in the kitchen/diner, but he views that as clutter.

Thanks for letting me know your experience with genomic testing. I am interested to see what mutations I have too and to see if I could benefit from any of the newer drugs coming out.

Sophie x

Hi Sophie

I had the genomic testing last month. It showed only 10% of people have my mutation.

It said that Afinitor would work but that is the one that made me so sick I got pneumonia.

It showed that Gemzar chemo might work. So I start chemo next week. Sure hope it works since they are the only two that there was.

Hope you have more choices then me. Good luck.

Barbara

SophSP
SophSP
in reply to Jerseygirl45

Hi Barbara,

Thanks for letting me know. You got your results quickly. I was told that I have to wait about 12 weeks for the results.

I wish you all the best as you prepare to start chemotherapy next week.

Sophie 💓

I invite people for dinner. It’s a great cleanup motivator.

SophSP
SophSP
in reply to Gwennie123

Now that is a brilliant idea, Gwennie! My husband says my dad needs to come over more often, as I clean more when he does!

Sophie 💓

Hate hate hate cleaning. In my youth I used to clean for MPs - filthy buggers they are, which appeases me as I’m not as unclean as them.

I invite people to stay which makes me clean. But I have to split it into chunks over a few days or so. One of my friends gets a cleaner in every fortnight just to clean kitchen, bathroom and floors - it also makes her tidy before the cleaner comes.

I couldn’t hoover due to back pain, until I recently bought a very lightweight (Shark) hoover in the sales. It virtually takes itself. The downside is that I now can hoover!!

Wishing you all the best for the testing. I think gaining more knowledge for you is a good thing. The more understanding you have, the more weapons in your arsenal, so to speak. Keep us informed

Clare xx

SophSP
SophSP
in reply to BellaE

Hi Clare,

Thanks for the cleaning tips! I'll pretend I didn't read the recommendation for the Shark hoover. If I tell my husband it will land up in the kitchen tomorrow! I do actually have reason to tidy things up a bit, as a couple of social workers are stopping by next week to talk about my brother and a friend is also coming round to pick up a key as she is looking after my cat while I'm in Iceland.

I'll post an update when I get the results from the genomic testing.

Sophie x

BellaE
BellaE
in reply to SophSP

Enjoy your trip.

Xx

SophSP
SophSP
in reply to BellaE

Thank you, Clare. I am leaving for Iceland on the 16th. I'm heading back to the same hotel I went to last year. I can't wait!

Sophie x

BellaE
BellaE
in reply to SophSP

How fantastic. Enjoy the clean beautiful sky

Xx

SophSP
SophSP
in reply to BellaE

Thank you! I plan on having a good time.

Sophie x

Hi

I try to make a list of cleaning, jobs etc & enjoy ticking one or two off. However, I’ve learnt to live with dust most of the time 😂

Hi Jo,

That's a good idea! It's funny you should say that because right after I got married and moved in with my husband I had a gap in working as I had to fulfil the requirements of my visa. So I made a list of weekly jobs and that helped focus my mind. I told a friend about it and she thought I was crazy.

Sophie x

Oops pressed “reply” too soon - if only I was that quick with the cleaning ....

I have bloods & Oncologist appt on Mon/Tues this week & hope all is ok as we are going to Florida on Wednesday. I haven’t started to pack yet - yikes!

I will also ask about genomic resting. Thanks for sharing this.

Jo x

I wish you well with your appointments this week. Hopefully your oncologist will agree to genomic testing for you. When I asked my oncologist she was happy to put the referral through. I wish I had known about the possibility sooner, as I would have been right on it.

Have a lovely time in Florida. You must love the heat and humidity!

Sophie x

Thrifty51
Thrifty51
in reply to SophSP

I am in Orlando. Temp is 58 and humidity is 40%. It's a good time to come though because in a few days the temp will be back to mid 70s.

SophSP
SophSP
in reply to Thrifty51

I'd be happy with the current temperatures you are experiencing, but 70F is still a bit too hot for me.

Testing not resting .... soz

Yes I clean more when I invite friends to come over

I requested to my oncologist the genomic testing from bone biopsy that changed to triple negative but the specimen was too small so they couldn’t do it and I did Foundation one that is done from your blood I got the results I have some mutations that gave us a list of some medication to take.

Hopefully it will work, take care

God bless you

SophSP
SophSP
in reply to PLASEM

Hi,

That is useful to know. Thank you! I'm glad you were able to get some answers with a list of medications that can be of benefit to you. We are all so different, so even if we have the same diagnosis some treatments might be better suited to us than others.

Thanks again!

Sophie x

Invest in a robotic vacuum cleaner, set the timer and all you have to do is empty the canester after every use. 😊

SophSP
SophSP
in reply to Julie2233

Hi Julie,

Thanks for the tip! I will have to look into that. I have a Henry hoover at the moment.

Sophie x

Jerseygirl45
Jerseygirl45
in reply to SophSP

I also have a robot vacuum I love. Press the button and walk out the door. He goes back to charger when done. I leave him with three rooms open. Then will charge and close him in one bedroom at at time

Best investment have had maybe three over last twenty years. NOW IF THEY HAD A BATHROOM ROBOT 🤗

Barbara

Hi Sophie: Good luck on the cleaning! I’m not an expert in that area. I do a lot of what others have posted. I have had liquid biopsies for 100 or so mutations from Guardant360, all negative. I also had a separate lab for the PIK3CA mutation. I was positive for that. I’m currently in my 9th round of IBrance/Faslodex. When that stops working my 2nd line of treatment will be PIQRAY (or a drug that sounds like applesauce 🙂). The cost for the Guardant360 was close to $9000 US. My insurance did not approve, I told them I could not afford it. The lab wrote off the expense.

My understanding is that these liquid biopsies are relatively new and they can be done multiple times as our mutations may change over time. We all know how crafty cancer can be at mutating to outsmart the current treatment.

I got the results in 3 weeks. I asked for a copy before my next Onc appointment so I could formulate questions for the appt. The beauty of knowing is that any mutation you have can be searched on current treatment options or what clinical trials you would benefit from or be eligible for down the road.

I hope all goes well for you!

❤️🙏❤️🌈

Hi,

Thanks for the information on the genomic testing. Yours sounds very thorough! That's a lot of mutations to check for. But that's also a lot of money to have to pay for it, so I'm glad you got it done for free. I don't have to pay, as genomic testing is free on the NHS. Cancer is expensive enough as it is what with driving to and from appointments, buying supplements, paying for private prescriptions and so on.

Piqray is the same as Alpelisib (apple sauce does sound better!) I remember mentioning it to my oncologist shortly after it was approved last May and she seemed on board with it. I believe it's taken with faslodex. My oncologist said that my second line of treatment will be faslodex, so I assume both will be offered together. If not, I will want to know why. A bit like when I asked why I had not been offered ibrance and I was told it was down to cost.

Cancer certainly is crafty. I am trying to do my best to block all the different metabolic pathways and to see if I can keep it from mutating for a long time. It isn't easy to figure any of this out, especially as I do not have a medical background. I have to rely on my oncologist, GP and integrative doctor for all else that they do not cover.

Sophie x

Jerseygirl45
Jerseygirl45
in reply to SophSP

Sophie

Piqray is the newest treatment I wish I matched it but did not. Hope you do at least it gives you another option.

Barbara

SophSP
SophSP
in reply to Jerseygirl45

Hi Barbara,

Thank you! I hope a new treatment comes along that matches your mutation.

Sophie ❤

Hi Sophie!

I had a genetic workup when I was first diagnosed in 2016 - my mother's side of the family has a lot of cancer (6 of the 7 siblings have had cancer). They discovered that I was BRCA negative, but that I had a PALB2 and CHEK2 mutation. The PALB2 stands for "partner and localizer BRCA 2" - and is basically a mutation that causes a protein that prevents tumor formation to not form properly. It is also associated with colon cancer. CHEK2 is associated with breast and pancreatic cancer. My initial breast tumor was ER+/PR+/HER2-.

When I was diagnosed with bone mets in May, they biopsied the new lesion in my rib and discovered that while I was still ER+ and HER2-, the new cancer is PR-. So it mutated as it spread. My onc also had my new lesion tested for the PIK3 mutation which would allow me to take a new drug as a second or 3rd line treatment when the mets spreads, but I do not have that mutation.

I don't know if the initial blood test with the 2 mutations will direct my treatment in the future, but I'm a high school Biology teacher, so more information is always better for me. And who knows what they may discover in the future! Best of luck to you in getting this information, and in your house cleaning expedition!

Alana

SophSP
SophSP
in reply to alana303

Hi Alana,

It sounds like you found out quite a lot about your mutations which has been useful for you. I was trying to explain to a friend today about my genomic testing and she didn't seem to really understand what it's for. So I just explained that it's to tell me more about which mutations I have and that it will hopefully direct future treatments. I haven't told her my disease is metastatic, and I have been hesitant to do so. But perhaps I should tell her. She seems to think that as the tumour is shrinking there's no point having this done. I should tell her this isn't curative, it's more investigative. I just don't know. Once I tell people that's it. I can't take it back.

Sophie x

alana303
alana303
in reply to SophSP

Hi Sophie,

I was recently sent this link from FORCE (facing our risk of cancer empowered). It has a bunch of articles and links regarding genetic testing...

facingourrisk.org/XRAYS/por...

Cheers!

Alana

SophSP
SophSP
in reply to alana303

Hi Alana,

Thanks so much for sharing this link. I will have a look.

Thanks again!

Sophie

Hi Sophie, I have an Irobot Roomba named The Captain. I love him dearly. He is three years old and vacunms places a vacuum cleaner can't get. My husband uses the big vacuum occasionally. good luck on your gene testing. Blessings Hannah

SophSP
SophSP
in reply to hdhonda

Hi Hannah,

Thanks for letting me know about your hoover. It sounds great! I also appreciate the well wishes for tomorrow. I'm nearly ready. I just have to complete the questions.

Sophie x

Wintervt
Wintervt
in reply to SophSP

Good luck tomorrow, Sophie!

xo Jade

SophSP
SophSP
in reply to Wintervt

Thank you, Jade! Now I just have to pick what to wear. I like to dress up for my appointments.

Sophie x

Hi Sophie!

Hope your appointment went well ! Cannot wait to get your update! Xo

SophSP
SophSP
in reply to LeeannW710

Hi Leeann,

My appointment isn't until 2:30pm today, so I still have another six hours to go. Thanks for thinking of me!

Sophie 💓

Hi Sophie, I just had genomics testing done this past Thursday with a biopsy of a new lesion on my upper abdomen following. The biopsy was more involved than what I thought it would be, my breast cancer biopsy when I was first diagnosed was a piece of cake compared to that. They went in 11 times with the needle, they had to get 9 samples and two of them did not take so they went in a couple of extra times. So I don't think I will know anything for at least a month, they will get the results at the genomics clinic at the hospital where I go and then meet as a panel and call me for an appointment to discuss it. I am a little anxious about the time frame because my current Med, ibrance, no longer working along with faslodex. I have been trying to research other possible meds that I might go on just to get a heads up. I'm not going to think a whole lot about it, what will be will be. The thing about genomics is that it is supposed to narrow down your choice of meds to your specific type so that you are not taking General chemo meds that might not help you. I asked whether it is better to have more mutations. The answer I got is that it is best to have mutations that they already have the meds for. So we will see, I wish you the best with your genomics results.

SophSP
SophSP
in reply to Wolverine19

Hi,

I hope you find out more when you get your results back. Wow! That was very involved. The doctor who did my biopsy today went in four times. I told her to get as many samples as she wanted.

All the best with your results,

Sophie

hi

My wife was on Ibrance and Faslodex

for three months when it stopped working after testing it was discovered she had the FGFR1 mutation and that was the reason the Ibrance didn't work

she us now back on Taxol

there are no approved treatments

for the FGFR1 mutation in breast cancer at present but a number are in clinical trial

Thank you backgreen, so I asked my oncologist if it's better if you have more mutations. His response was that the best answer would be that it's best to have mutations for which they already have medicine developed. So in your wife's case they don't have any at least not yet. I am in limbo, just waiting for the results next week. Anxious to see whether I have mutations they can work with. Otherwise I too will probably be on taxol or some other General Med. All the best for your wife.

Hi Sophie

Have a good trip, if I remember correctly you enjoy the cold weather.

As for cleaning I am the type to pick something up from the room I am in and put where it belongs then pick up something from that and so forth. I too have an i robot vacuum push the button and he goes for about an hour. Had all carpet taken up from main floor last month. Put in nice gray waterproof wood look floor due to old dog that we love. But has accidents. Do love the floors.

Because genomic testing is not giving me many choice of meds I am worried my time here will be shortened. So getting back to my list of things to do. Today I will close my eyes and empty all garmen t bags of clothes I no longer wear. Even though they are good. Will take to a goodwill thrift shop then onto my main closet.

Seems like I wear same thing all the time since I no longer work or go very far. Seems I sit home most times. Then onto book cases.

Hope I do not get sick from chemo this time.

But I need to uncluttered my life which will let me relax.

Can't wait to see how we all do on the genomic testing meds. Hope it helps us all to find the right meds for us.

In the meantime I will have a clean house.

Barbara

SophSP
SophSP
in reply to Jerseygirl45

Hi Barbara,

Yes, I do like cold weather (just not too cold!) I can function when I am not melting!

I hope that there are more options that will come available for you. Please don't give up hope!

I am anxious to see what the doctors come back with too. But I will have to wait up to 12 weeks for the results.

Sophie

Waiting for results.

SophSP
SophSP
in reply to Lordmandy

How long do you have to wait for your results? I have to wait for up to 12 weeks.

Jerseygirl45
Jerseygirl45
in reply to SophSP

I only waited 4 weeks.

I hope now that everyone is having genomic testing, more people will have my mutation. The more people that have the same the more they try to find meds for that one.

Barbara

SophSP
SophSP
in reply to Jerseygirl45

Hi Barbara,

Four weeks isn't too bad.

I hope you are right. It would make such a difference to have more treatment options.

Take care,

Sophie 💓

Hi Sophie

Yes, it has been hard. But I was lucky he wanted me enough to sign my birth certificate and treat me with kid gloves all my life. They all did I always thought my mothers sister had something about me whenever I was around them. She had 5 sisters 2 brothers. In the forties having a baby on your own was not good. So her sister arranged for me to be born at home with a midwife. Me mother named me after her. One of my aunts could not have children. I remember her keeping me alt. I even remember her asking to adopt me since my mother had four children younger. Wow! Cannot believe I let this out. I was the big secret in the family. Only I did not know it. ThoughI think she tried to tell me a few times. She would tell me about the tall handsome man she was engaged to but she broke it off . That was as far as she always got.

I think it is better now when siblings have different fathers but they know it and sometimes get to know them. And from my detective work I think he lived around the corner from us when we were small.

What a soap opera🤣

Barbara

SophSP
SophSP
in reply to Jerseygirl45

Hi Barbara,

I can't imagine how hard it must have been for you learning that your father was not your biological father. But it's to his credit that he loved you and raised you so well. Thanks for sharing. I have also shared things in here that I have not told my nearest and dearest.

Have a good weekend,

Sophie ❤

I did. They used the pathology from the lumpectomy and a mathematical algorithm to see how my cancer cells

are like others and compare how those cancers behaved over time. Whew that’s a lot of words hope it made sense. They have enough test results now to make a reliable prediction. I had a 28% chance BC would return within 5 years. Too high for Dr. so I had 4 rounds of chemo to cut the percentage (like bonus points) down to 15% plus 7 weeks of radiation. Now ready to start letrozole. So it begins... But that’s why many women after a mastectomy still develop cancer. So I thought how lucky I got this test. Hope results ease your heart and keep you in control of your treatment. Hugs strong lady

SophSP
SophSP
in reply to Paradise43

Thank you for sharing your experience with genomic testing. I am looking forward to getting the results and learning more about my particular mutations. It's been three weeks since I had it done, so I have another 9 weeks to go.

Sophie 🌷

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