BRCA1, tumour found - 30 years old

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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Janette
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Re: BRCA1, tumour found - 30 years old

Postby Janette » Mon Aug 27, 2018 9:16 am

Hi Steph,
My veins were affected badly by intravenous anti biotics for an infection. Hopefully it won't affect you too badly long term. I guess you do what you have to do and a port can save a lot of mucking around and preserve veins. I had to have a central line with recent surgery and it wasn't a big deal. I offered to pull it out myself lol.
Janette

Dx LCIS Dec 1997, Dx IDC, DCIS, bilateral LCIS Oct 2005 er+pr+her2-
Bilateral Mastectomies, expanders and silicone implants

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Sat Aug 25, 2018 4:24 pm

Hi Judy,

Ugh how annoying it seems to have been for you too.

4 times I meant 4 cycles of this; Carbo/taxol one week, then the next week taxol, then the week after taxol. No break in between.
I was just told this yesterday but the week prior I was told only 3 cycles of that.
I have the piece of paper where the first oncologist wrote it down and it said:
4 cycles of A and C, once every 3 weeks
3 cycles of paclitaxol and carboplatin x3, every 3 weeks.
So I’m really confused.

They can’t do the PICC because of the clots. The port means, once I have it in, I also have to have it out at some point. I hate the fact that the chemo is ruining my veins at the age of 31.

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Re: BRCA1, tumour found - 30 years old

Postby JudyB » Sat Aug 25, 2018 11:16 am

Steph, I'm sorry that you are upset, it does get upsetting when they change things around, I think because we get used to the idea of what we have ahead and a change just does our heads in. Different oncologists have different ideas although I am sure they are all talking to each other and deciding what is best for you. When you say 4 times all up does that mean carbo/taxol 4 times with three weeks inbetween? That is what I had and it is very normal. I too was told that I would be having it weekly and then it changed to 4 times. I liked it as it mean only having to go in four times.

I wasn't offered a port for my first lot of chemo, just the PICC line which I refused (because I was scared lol.) I wish they had given me the port as I wouldn't have such terrible veins now. It sounds scary but I found the port to be wonderful. No more jabbing in the arms trying to find a vein. You can shower with it without having to worry about getting it wet. I now have a PICC line and whilst it's great to be able to give blood through it I have to constantly worry about getting it wet which isn't too bad while I have no hair but once that grows back, ugh.

The blood clots are a worry but at least they are on to it. When I had my PICC line put in the girl doing it told me I had a big clot in the arm too, no doubt caused by the chemo etc. She wasn't concerned about it as it looked very old so no anti coagulants for me. As to the UTI, I hope that clears up quickly, they are awful things but I have found that the medication usually works really quickly. It's not what you need with all the other cr*p going on in your life.

I'm sorry I can't make things better for you but I'm sure once you start the new regime you'll get back into the swing of things. You are about halfway through and soon it will be finished, hang in there.

Judy
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Sat Aug 25, 2018 1:29 am

Thanks Judy, I’ll definirely keep it in mind if I have pain.

I’m really upset today. They found blood clots in my arm so I’m now on a daily anticoagulant. They also want to put in a port because they can no longer use that arm or the arm on the side of my breast cancer because of the risk of lymphodema. I’ve also got a UTI.

The other thing I’m upset about is when I first was having my cancer care via box hill hospital, the oncologist I saw for the first time told me my chemo regime which was 4 cycles of A C, once every 3 weeks. Then 3 cycles of paclitaxol and carboplatin, once every 3 weeks.
I then transferred my chemo to maroondah hospital as it was closer.
I’ve seen different oncologists there, and was told last week before starting the Paclitaxel and carboplatin cycles that it was Carbo/taxol once week, then the next week and the week after just taxol, then a week break, then this regime again 2 more times.
Then I was told today it’s 4 times all up.

This was not what I was originally told of my chemo regime at box hill hospital and it has all changed and I’m upset and not certain that this regime I’m currently undertaking is the one that was originally planned. What do I do?

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Re: BRCA1, tumour found - 30 years old

Postby JudyB » Thu Aug 23, 2018 2:46 pm

Steph, I found both Taxotere and Taxol caused bone pain in my feet/ankles. When I had Taxotere (for the breast cancer) it came on very quickly and it was easier to control if I took the pain killers at the very first sign of pain. When I had Taxol (for the uterine cancer) it was more like a dull ache that your feet get when they are extremely cold. This was more difficult to control, possibly because I was in the public system and had different oncologists every time I went for a check up which made continuing care regarding pain relief a little more difficult. Also I was warned beforehand that because I had already had a Taxane chemo before my neuropathy would probably be worse.

You may not have these issues, many people have said that Taxol was much easier to tolerate than AC. I didn't want to scare you with the pain but I want you to be prepared and be able to stay on top of it if you do feel pain.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Thu Aug 23, 2018 3:40 am

Hey Judy,

I’ve never heard of the cooling gloves??
Yeah true, chemo is much harder with scalp cooling.

What do you mean any pain???

Steph xx

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Re: BRCA1, tumour found - 30 years old

Postby JudyB » Wed Aug 22, 2018 9:25 pm

Hi Steph, Good to hear you are going well. I was offered the cooling cap but could think of nothing worse than a cold head going through chemo. I did have the cooling gloves for my nails and that was bad enough.

I had carbo/taxol for my uterine cancer treatment. Be sure to jump on any pain quickly and don't let the doctors fob you off. A lot of women said Claratine helped with that. You sound like you have it all under control so best of luck, it will all be finished soon and you can move on. Woo hoo!

Judy
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Wed Aug 22, 2018 8:39 pm

Hey guys!

Just an update as I haven’t been on for a while.

I’ve finished my A and C chemo. I did scalp cooling.

Now onto paclitaxol and carboplatin, 1 down, 8 more to go. (Only 3 of the combined, the rest are paclitaxol on its own).
I couldn’t tolerate the scalp cooling any more as I had anticipatory nausea and vomiting. So I decided to stop and shave my head.

I have tolerated the chemo quite well. It hasn’t been as bad as I thought it would. I do get tired 3-5 days after chemo. I get a bit of constipstion and very hungry from the dexemethasone, dry mouth, bit of stinging when urinating but overall, I think things could have been worse.

During the A and C, I had neutropenia so had to inject myself after each round to bring up my white cell count.

I also had my left breast drained of fluid twice as it builds up as the body is trying to fill the space there, however, it hasn’t been infected which is good.

I can’t wait til chemo is over! :-)

Steph

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Sat Jun 02, 2018 9:09 pm

I haven’t had this metallic taste but they did tell me I could get that. Smells have been very distinct too! Strange!! A colleague at work said she had cravings during chemo too

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Re: BRCA1, tumour found - 30 years old

Postby schoolteacher » Wed May 30, 2018 8:18 pm

Hi Steph
I didn’t have cravings so much as I couldn’t tolerate some foods or drinks. It was the Metallic taste in my mouth.
I found days 3-5 after chemo my energy levels fell. It kills off white blood cells. As they built up, energy returned. It was cumulative with each treatment
Hoping it is kind to you :hugs:
DX OCT 08, 9mm Her2+ grade 3 tumour and DCIS. Nodes clear, wide local incision, unclear margins so LB mastectomy, chemo Taxotere Carboplatin Herceptin Tram Flap Nov 2011

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Tue May 29, 2018 8:51 pm

Thanks ladies
I was no energy for a day but it didn’t help that I did a night shift haha. Feeling good at the moment though
Did you guys get weird food cravings during chemo?
Steph :-)

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Re: BRCA1, tumour found - 30 years old

Postby The new girl » Sat May 26, 2018 12:18 pm

:wave: hi stephO I hope all goes well with your treatment,hope you tolerate it well
Rosa

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Re: BRCA1, tumour found - 30 years old

Postby ruth1 » Fri May 25, 2018 8:57 am

chemo is so variable - some get sick and others don't and everything inbetween. Hope you are tolerating it well and it stays that way. Not an easy time.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: BRCA1, tumour found - 30 years old

Postby Janette » Thu May 24, 2018 10:57 pm

Hi Steph,
Good to start the chemo, I hope it treats you kindly and is over before you know it. :hugs:
Janette



Dx LCIS Dec 1997, Dx IDC, DCIS, bilateral LCIS Oct 2005 er+pr+her2-
Bilateral Mastectomies, expanders and silicone implants

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Re: BRCA1, tumour found - 30 years old

Postby StephO » Thu May 24, 2018 9:35 pm

I had my first round of chemo today!
Just thought you guys would like to know!
Doing well so far so hopefully it doesn’t get too bad! :-) xx


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