Starting Chemo March 2015

eheinrich

What is the benefit of tamox or lupron/ovary removal over the other? I understand how they work but not why one would be preferable. I realize it's different for everyone, but wonder why I'm on tamox & others are doing other things. Just want to be sure I'm doing the right thing.

rleepac

Lee - did you have any positive nodes?

KBeee

PB and Whitney, Hoping all goes well with the tests today and that you both get the all clear.

Jackbirdie

Eileen- the way I understand it, Tamoxifen is the older of the two medications, and at one time it was the only choice for estrogen + women. Pre or post-menopausal. It has some SEs, but was the only game in town.

They then developed the AIs, a category of meds that suppresses estrogen altogether, rather than blocking it. And I believe that's why bone density is more of an issue on the AIs. Statistically, the AIs offer more protection (I'm not sure how much, less than 10% I think, but don't quote me ). But. This is a big but. You must be through menopause to take it. If you are not through menopause, it is ineffective. No protection. So if you are young enough (according to the SOFT trial results) ovarian suppression by either oopherectomy or by medication like Lupron, you can fool the body into menopause and take the medication that offers more protection.

My MO wouldn't do it for me. He said if you drill down into the SOFT trial data you will find that this method only benefited very young women, say, in your 30s. After that, the benefits decrease. He plans to keep me onTamoxifen for a couple of years then switch me to an AI after we are certain menopause is clinically, provably, over.

There are some women who either cannot tolerate Tamoxifen, or who have other medical conditions (I believe a history of blood clots might be one reason -again, not sure in this, but for example) for whom Tamoxifen would be more dangerous than beneficial, and those women might be advised to take the AI + OS, not for the benefit of protection, but simply because the Tamox is not a good option.

I am calling in SpecialK to review and correct any misinformation I have spewed out here. But I think that is the general gist of it. Your MO should and I mean SHOULD have explained this to your satisfaction, the reasoning etc., behind the tx.

eheinrich

She didn't bring up alternatives for current treatment. She did say once I was through menopause we would switch to AIs. When we do blood work she'll be checking for menopause. I didn't ask questions, which is my fault.

Jackbirdie

E- please, not your fault, so much information is thrown at us at once, one can't absorb it all at once. We all have different dx and in this as in many other things, we will be getting slightly different treatments.

I always say you don't know what you don't know. At the time your MO discussed this with you, you didn't know enough to ask. And if it was early on, perhaps the MO didn't want to lay any more info on you.

I didn't become aware of this issue until 3/4 the way through chemo. I thought I was being so smart suggesting the AI plus OS. When he explained, I was devastated.. I worried about the less protection. But there are some "sort of" advantages to Tamox. I have read it can actually help to increase bone density, which would be great just prior to the AI, which does the opposite, and possible also cholesterol lowering benefits. The uterine cancer risk is less than or equal to 1%.

wpmoon

Ultrasound went okay - she looked at my liver, kidney, and gall bladder. I should hear back from my MO in a few days.

My appointment was in the same department where I had to go for my surgery. So that brought up a lot of emotions. I cried while I waited to be called back.

molly1976

I hope you hear sooner than a few days, Whitney! Waiting is the pits.

I am having a nice time this afternoon freaking myself the hell out googling progesterone negative breast cancer prognosis, so that's been fun. I just took a Xanax.

wpmoon

Molly - I read some article or other this morning about IVF, and one woman commented on it that she couldn't risk it because she was ER/PR+. Well, I did a round in January, and I'm ER/PR+. All I could think after her comment was, "did I just put myself at risk for more cancer?" Even though I asked that question of my fertility doctor before we started, and he monitored my bloodwork closely, it still freaked me out.

It's been a morning of anxiety.

molly1976

I guess there will always be something we can think up to worry about!

rleepac

While we're on the subject...I get freaked out that women get diagnosed with metastatic breast cancer even though there weren't any positive nodes. How the hell does that happen?!? Aren't the nodes the gatekeepers? Aren't they supposed to be the 1st stop? Why is it that in some women, the cancer just sneaks right through?

Somebody come along with something positive...please! Otherwise, this is going to be an Ativan-kind-of-day!

Don't worry Molly...I was already down 1 Ativan before you posted

Bekah

pboi

Waiting is the pits!!! Trying to keep it together over here. Haven't even had the scan and then have to wait for results!

Molly...you know I've been there myself. There is not a lot of info out there about that, I think they just don't know a lot about it yet. From what I could put together, there might be a degree of Tamoxifen resistance with these individuals. This was one of the reasons I'm going with the AI. Please post if you find any pertinent info or PM me.

I hadn't looked at my ER/PR % in awhile. When I was diagnosed everyone said oh your positive in both that's good. What I didn't realize was that if you are less than 20 or 10% PR + (depending on the source ) you may be considered PR- which is not as good. And might affect your choice of hormonals. But again little info out there so hard to know what to do...

Sorry Bekah...nothing positive from me...looking for my Ativan...

Anyone else, something positive/good happening? We need a pick me up

PB

molly1976

I know, Bekah. That is my #1 big worry. Even moreso than recurrence, I mostly am just afraid that the cancer is already elsewhere in my body but nobody thinks I need a scan because I was node negative. My MO did say that it's possible to spread through the bloodstream but that is very rare.

rleepac

I've HAD a PET/CT scan and I still worry LoL...

BTW, my PET/CT showed a 4mm something on my left lung. But all the docs are saying 'it's most likely nothing because you live in the Central Valley of CA and it's extremely common to have little spots from Valley Fever or other pollutants. Ummmmm...that's not very reassuring! That's why we are doing a repeat Chest CT in 2 weeks...I wanna know what that spot did with chemo.

Bekah

Jackbirdie

There is a thread that got started recently called "Crazy Town" and being on the road to it.

Crazy Town is where all these ideas and fears live and at one point or another we are all on that road.

Yes it is possible for cancer to spread through the bloodstream directly and bypass the lymph nodes altogether. You can google it. It will just take you closer to Crazy Town.

If, in the unlikely case it has happened to any of us (I was quite worried just prior to chemo because my liver enzymes had been quite elevated - 2-3 times high normal off and on for a year. No explanation) it won't change the fact. It is unlikely that it would have grown during chemo. Some of the same chemo drugs are used in Stage iv cases. They even use Tamoxifen. The treatment if you did have distant cancer might be very similar to what you got or are getting.

So all you could possibly do in fact is insist on scans. Some docs will do it as a baseline or to rule out this kind of metastasis outside the lymph node pathways. Some will not in the absence of symptoms. Some insurance will pay and some will not. If you think about it, they must believe it's possible there are itc's floating around our body or they would not give chemo or radiation. Itc's will not show up on a scan.

I think the best route is to believe the women that have gone before us. Know that what we are feeling and fearing is normal. We will all travel the road to Crazy Town from time to time. With time, we will spend less time on that road.

On these days when fear tries to take over, take the Ativan. Try to take a walk. Try to find something beautiful. Pray. Get your life right. It will help you today. And it's the only thing you really have control over.

I hope this does not depress anyone. It's just how I stay out ofCrazy Town

rleepac

Yes, I'm entering into crazy town as I'm now PFC and pre-surgery. It's a natural phase and I'm sure I'll get through it.

pboi

I'm right there with you in Crazy Town, Bekah. Let's try not to stay long and find our way out!

What surgery are you having and when?

PB

Jackbirdie

I KNOW you will, Bekah. And I know you have help. 🙏.

IndyGal35

Bekah, I had 3 sentinel nodes, and they were all negative. I asked my BS how we know for a FACT that the lymph nodes didn't have cancer at one point that could have been knocked out by chemo. How do we KNOW that one tiny little cancer cell didn't pass through the sentinel nodes and keep going? She assured me that radiation is made to cover those scenarios. I will be getting rads despite PCR and negative SLNB due to original tumor size. I'll confirm the "scenarios" when I meet with the RO next week and report back....

Whitney, waiting is so awful. Katy is right. We are in your pocket, and we will all be anxiously waiting for good results.

Thanks for the support, Linda. I was draining over 50 mL per side last night, and I'm over 2 weeks out now!!! I saw the PS today, and he really thinks I should stop draining within the next week. I hope so, because these fills make the swelling around the tubes even worse and more sore! I thought about getting a lemon charm to represent all of the juice I've been producing. *barf*

Carrie, the PS said I'll get filled up to 450-500mL on each side. My original size was around 850, so that's a little over half my original size. He will fill the radiation side with about 50 extra mL to compensate for rads shrinkage. He also said that the non-rads breast can sometimes get in the way. If that happens during the sim, he can take out fluid for the RO and refill it after rads. Finally, he'll wait for 6 months after rads to do the implant swap and allow time for healing. Hope that helps you a little bit! :

Trvler

Wow, I missed a lot today. I can't keep up. Pumped on steroids so getting a lot done as usual. I LOVE Wednesdays. I feel almost normal.

Ninja: ARe you taking glutamine?

I am always surprised when people are getting all these scans. EVERY time I mention one, they shut it down. Maybe you all have better insurance?

Katy: I think you explained the Al and the Tam right. They mentioned not giving me Tam because of my clot. I still am not clear on if I am more likely to clot because I did or the port was the cause and I am NOT more likely to clot.

Whitney: I am sorry you have to worry about the test. That's so hard. I wish those doctors would review them immediately and put people's minds at ease.

Bekah: When's your surgery?

Molly: Same worries. Same fears.

Got an echo today. Guy said it looked good but he said so the first time when all the fluid and clot was there…until the very end. So we'll see. They said the MO was way overstating the risk using the word collapse with regard to my heart but I do see why she said it. The word was in the report she got. I do feel better but my heart rate is still a little high. I bought a heart rate monitor and a step monitor so I can keep track of it.

Italychick

I'm sorry everybody is feeling so off today. I've been posting joke pics on our Facebook forum, hopefully the pics I posted will help lighten things up a bit! The one below is my favorite, especially since I've only managed to ride my bike once or twice since I joined the exercise forum lol. But to be fair, it has been brutally hot and humid here in San Diego for us.

Trvler

Love it, Theresa. I haven't joined the FB group. I just want FB to be a place where I don't have to think about cancer, KWIM?

Nice to 'see' you.

Jackbirdie

"LIKE" ..... Where is the like button onhere?

Italychick

Okay, one more for the non-facebook members. Sorry, guess I'm bored today lol.

littleblueflowers

Oh My God..LMFAO. Those are perfect!

Italychick

Ok, maybe one more.

SueH58

Bekah - I asked my MO that very question. He said the cells escape through the blood. I scrunched my face and said "damn!" That's why he still felt I should have chemo.

SueH58

Bekah - I particularly liked the last one :-)

pboi

Thanks Theresa for posting, I like the exercise one...and exactly how I feel about exercise today!

PB

Italychick

I'm with you. I'm getting ready to ride, but only because I am too neurotic not to. I would rather go to Karl Strauss, eat burgers and onion rings, and drink beer!