TRIPLE POSITIVE GROUP
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i started Arimidex in April of the year I finished Herceptin in August.
I think i read in the "Doing Well on AIs" forum that an MO started her patients on an AI every other day for a month to ease them in and check SEs.
Vicky
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Thank you SpecialK and Vicky.
Vicky, I see from your timeline that you started Arimidex a month and a half after the oophorectomy. Were you strongly hormone positive? I like the idea of starting on AI every other day. I am keeping an eye on the "Doing well on AI" forum as I am determined to do well on them too.
I didnt have a complete response to chemo (far from it) and I am terrified of my hormones driving cancer growth. I will see the MO in two weeks so I will request more detail.
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LaughingGull,
My cancer was also 95%ER+/95%PR+, and I started my AI about a month after surgery but before I started radiation. I do think that my MO wanted to give my body the chance to heal before I started on a new drug regimen.
Interestingly, my new MO believes that my cancer was more driven by the overexpression of the HER2+ protein than it was by hormones, even though my cancer had plenty of receptors for ER. Who knows? Good luck!
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Laughing—I just checked my notes and my MO said I’ll start the AI two weeks after rads.
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Feeling bummed and puny after my 3rd of 6 chemo cycle on Friday.
The lab work on Tuesday revealed elevated liver enzymes. The reference range for alkaline phosphatase is 33-130 and my results were 260. Last cycle it was 82. The reference range for AST is 10-35 and my results were 71. Last cycle it was 12. The reference range for ALT is 6-29 and my results were 243. Last cycle it was 14. We reran labs before starting my pre meds and the results were shockingly more elevated.
As a result, I was unable to get all four meds today. I did get 420mg of Perjeta, 386mg of Herceptin, 690.2mg of Carboplatin but no Taxotere.
No information from the Onc so I'll seek a consult before the next cycle. I can't wait 21 days to learn what he's got planned if we can’t get the liver enzymes adjusted appropriately. Is there a better option than Taxotere? Any insight others have to share from similar experience is appreciated.
Also, is there a protocol for submitting records to MD Anderson for consultation/ 2nd opinion?
Thank you!!
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My MO says I'm getting a CT scan of my brain before starting Herceptin, so sometime in a month or so. Is this usual? Well, I'm anxious about it, very much so. You probably know what I mean when I say I currently have cancer in at least a dozen places throughout my body... but right now, after I googled why a brain scan, the biggest tumor is surely in my brain. Every weakness or forgotten word is a proof... I can become a mess with google. Pardon my rantling, I just meant to ask whether these scans are usual.
And one more question - is mastectomy worse in outcomes than lumpectomy? how come? or am I seeing the wrong trials? (by outcome I mean only overal survival, I really don't care for the looks now - given the above mentioned fears). To give background - I'm considering BMX after chemotherapy, even when I've already had my operation (twice, the BS talked me out of mastectomy before the 2nd op, he pushed for just reexcission, not mastectomy). But I think I'm too anxious a person to withstand the checkups of the breasts and to wait when reccurence comes, given the close margins even after the 2nd op. I'm reading various posts and links and have come upon various trials, where lumpectomy with radiation had better outcomes tham mastectomy. So now I really don't know. Shall I push for BMX or be content with lumpectomy (nicely healed). I don't know the results of genetic test yet.
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laydeebug - Taxotere appears to be having an adverse effect on your liver, and this is not uncommon as taxanes are metabolized and filtered by the liver, among other systems. The fixes are usually a reduction in dose or delay, but switching to another taxane - such as Taxol or Abraxane - will not necessarily solve the problem since the issue is the mechanism of the taxane itself. It is possible that switching to Taxol for your remaining infusions may be mild enough that your hepatic system can handle it, but your MO will hopefully come up with a solution. For a second opinion on treatment I believe you have to have an in-person consult, same for Johns Hopkins, unless you are looking for a pathology second onion which I believe they can do remotely.
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JaBoo - studies say the outcomes are the same with mastectomy vs. lumpectomy + rads. I chose BMX because it would give me the best aesthetic outcome. I have relatively small breasts and multiple tumors, so by the time they were done doing lumpectomies there would have been nothing left. They also recommended bilateral over unilateral because of my age, but I would have chosen that anyway because it's much easier to reconstruct two matching breasts than to match one reconstructed breast to a natural one, plus the natural one would change as I aged whereas the reconstructed one would not. If I could have gotten away with just a lumpectomy and gotten a good aesthetic outcome from it, I would have been all over that. As for the CT of your brain, I have not had one because I wasn't having any symptoms of brain mets. I had a lot of trouble with "chemo brain" for a while during chemo but as my anxiety levels went down my chemo brain miraculously improved, even though I was still on chemo. Funny how that works.
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Hello all, just wanted to post an update. My tumor was .3cm so no chemo, lumpectomy successful, no lymph nodes impacted radiation and HT was proposed treatment from MO. I went for 2nd opinion MD Anderson, confirmed no chemo radiation plus Homonal Therapy. Forever blessed. MDAnderson did FISH test on my specimen and instead of HER2+ came out with HER2-. Go figure. So radiation will be completed Tuesday, 4 weeks stint, no side effects. Again forever blessed. Since I don’t qualify anymore for this forum I just want to express my appreciation for all of you and your very helpful advice and support over the last couple of months. I wish you all the best days ahead and strong recoveries. God speed to all
TTW
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Laughing Gull. It was a complete hysterectomy but that is not an option to select. And yes, it was about a month plus later. My numbers were in the high 90%.
TTW, best wishes. Thanks for checking in and saying good bye.
Oh JaBoo! I hope you find peace. I offer this. If you are going to be a wreck worrying forever go for the mastectomies. Once the lobular cancer was found in my "good" breast, the decision was cemented for mastectomies. However, I grew to hate my breasts and what they were doing to my body. I just could not have lived with the worry and the constant self examinations. I would not have kept my hands off them! Once you have cancer, "a cold is never just a cold." As I write all the time, I just love my new rack. No more sagging. No more lop sidedness. I do miss the sexual sensation from my nipples but I am alive and find that other places. Again. get want you want and get peace.
Vicky
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Blowaway - my MO's comment was "AI's are your friend. I will work with you to find the best one." Switched me from arimedex to letrozole at 5 months. If I exercise and hydrate, I do fairly well. I'll certainly be glad when Arizona's monsoon season is over however!
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I just ordered a really cute wig. I know I did it to myself by stopping/starting Tamoxifen 4 times (my hair is so thin) each time I lost handfuls and my scalp is scalped.... Anyhow... Since I'm going back into the combat zone (restarting either Tamo or AI) and will have hair droppage once again, I'm getting ahead of the game.
For all those who will soon be losing their hair to chemo, I didn't realize how much my old hairstyle was aging me until my hair grew back in afterwards and I experimented with different hairstyles as it grew out. I learned that short, uplifting, dark (my natural) hair color looked so much better than long and blonde highlighted
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Good news TTW, best to you. Tomorrow morning I go in for my 6th and last TCH as my platelets finallycame back and the echocardiogram showed that my heart flow improved. I am looking forward to a good Monday.
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ttw - yay!
Jstarling - yay for you too! I know you’ll be glad to get this last one under your belt
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Wishing all of you a good Monday, especially Jstarling who can get moving forward again. JaBoo I had a single mastectomy and don't miss the sick little boob at all.
I have 10 more rads to go (including boosts), am feeling the fatigue and the skin where the bolus goes is quite red and painful, but not opened up. I put Aquaphor on it every few hours and that helps. ROs office gives us aloe, Aquaphor, and Silvidene if it opens up. Anyone else get a bolus on top of mast site to keep rads from penetrating too deep (to heart and lungs)?
Then MO appointment on Tuesday along with Herceptin/ Perjeta infusion. Not sure when I will start my AI, but that's on my list of questions for sure.
What a long long road, and you ladies help so much, thank you.
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homemadesalsa: I finished radiation 10 days ago. I got the bolus every other day. I didn't really feel the fatigue but I was told it can kick in after you are done. My skin turned from red and warm and puffy and a bit painful to brown and peeling but no pain.
It will soon be a distant memory for you too. Hang in there!
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LaughingGull, Glad to hear that your surgery went well. For AI, I started mine eight days after my oophorectomy. My ER/PR numbers were around 98. For workout, I started full work out about two week ago (one month after my surgery). Good to feel like myself again and hope this could last...
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Coachvicky thank you for your words... I kind of feel similar in that that I slowly start to hate the breasts. I was so happy to breastfeed both my kids, but now, so shortly afterwards, the breasts are trying to rob my kids of their mother (the younger is just 4). I'm checking the bloody boob every day! Such a wreck
just now receiving my 2nd DD-AC, neuthrophils low, but got the go-go anyway.
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Blownaway, why did your doctor say there would be no cure if you had a recurrence? This is the first time I've heard that and it's a scary thought!
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tld - not to speak for blownaway, but I am sure the doctor was referencing a metastatic recurrence. Systemic treatment - such as anti-hormonal therapy - not only protects against a local recurrence in the breast, but more importantly protects against distant metastasis.
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Shelabela - I think it's great that you posted the picture. It is so very helpful for those weighing their reconstruction options to know what to expect. I hope your recovery continues to go well!
Blownaway - my MO put me on AI the same day I started HP so it's been almost 2 years now. I was initially on Arimidix but after 6 months the pain was unbearable, I could barely move. I asked my MO if I could just stop taking the AI and he said absolutely not, that in his opinion the AI was the most important drug in the treatment plan to prevent recurrence. He switched me to letrazole and I am doing much better. I still have pain but I walk 6 miles a day now and stay active which really seems to help. If I sit for more than 30 minutes at a stretch my whole body locks up but once I stand and get moving all is well.
TTW- great news, wishing you the best in the future!
Laughing - glad to hear your surgery went well. May your recovery continue to go smoothly!
Jstarting - yippee, so happy you're able to get this last one completed!
Homemade - you are in the home stretch, hang in there. Praying you find relief for the pain from rads.
Jaboo - I didn't have a choice with my mastectomy but I am really glad that I had one. They found a few single cancer cells in the breast tissue so if I would have had a lumpectomy those little buggers would probably still be in my body. If you will have constant worry I would say do the mastectomy. I wish you peace with your decision and praying the brain scan is clear. Sending (((hugs)))
Wishing everyone a happy and blessed week!
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Had my last Herceptin today! See my oncologist tomorrow and find out what’s next. My toenails were pretty messed up from chemo and are ok now, but now my fingernails are suddenly turning white like they are going to fall off. AI pain is bearable, mostly just hands and fingers but my hair is a mess, large bald spots on top so thin, nothing like it used to be be.
My hearing has def been compromised by the chemo, everyone said give it time but it’s been almost a year. Just got home from spending a week in NC. Husband and I drove from DFW to NC to see family,then back. Great to be home and we brought a little cooler weather home with us
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ltwj - yay for last Herceptin! Have you been worked up by an ENT about the hearing?
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Congrats LTWJ!!
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Hi ladies, just checking in. The tumor board meets tomorrow and will discuss my case again. Then I see my surgeon after that to tell me what they think as far as if I need further surgery and next steps. Please pray they see everything they need to see and make all the right decisions, and that I do too, if I have to make any! Thanks ladies.
Tomorrow is my baby’s 6th birthday. I hope I can put this aside mentally and enjoy the day with her!
Hope everyone has a good night.
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Praying for you Colleen, hang in there. Keep us posted and enjoy celebrating your daughters birthday!!!
Jenny
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Hi everyone,
Just dropping in to say hi! I'm having fun catching up on all the info. I hope everyone is doing well. I've been trying - for my mental health - to stay off the board. For me, it seems to create anxiety.
Blown away, interesting what you say about your hair. A girl I know uses to have blonde, long, highlighted hair. She was pretty then, but now wears her hair short and dark brown and it's gorgeous. I know some people prefer my hair when it was short, but I'm having a hard time figuring out if I want to go back there. I don't want a buzz cut look, and when it is a bit longer, it’s got curl which I find hard to shape into something I like. I had hoped for a cut in between super short and what I had before. Not sure what to do. I’m sure you look great with both styles!
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This is such a positive and helpful group of people!
I had a lumpectomy last Monday. Nodes clear and tumor is a 10mm IDC grade 3 100/70/2+/Amplified. Any idea what MO will recommend? I'm waiting for an appointment and anxious to know next steps. Also suggestions on what to ask MO would be most appreciated!
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Ok, I really should have asked this question earlier! Tomorrow, I have THE appointment with my MO about AIs. Since I am post-menopausal, I'm assuming that he will suggest this rather than Tamoxifen but I really have no idea. Are there any questions that I should be asking? Chemo is done, radiation will be done next week, so this is my next big hurdle. It seems as though so many have major problems with both drugs. Is anyone just able to take either and live a normal life without major side effects? Five years is a long time on a drug that causes issues. I've been nervous about every new aspect of cancer treatment so it is not surprising that I'm nervous about this!
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