Faslodex Girls Thread
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Allright, Pam! Status quo is good in our book.
Tina
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That is wonderful news!
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I got the actual words. The reading from the radiologist is that it's better than four months ago. "decreased uptake" in the osseus lesions. Not that my oncologist would ever lie to me, but I like reading the words.
The result is kinda wacko, but I did switch from Zometa to Xgeva so that might be it. Or maybe it's within whatever the standard error is for the test.
In any case the celebration is at my house!
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Celebrating Indeed!!!!!
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Pam, interesting results after 2 1/2 years, with a little progression 6 mos ago, right? I like your Xgeva theory. In any case big happy dances in order!
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Hi everyone!
I have read over a years posts trying to catch up
with you. Not real sure how blogs work, but I always just jump in until someone tells me otherwise! Giggle. I am 72, original DX stage 2B ILC, 2+ lymph nodes out of 17, opted for double mastectomy even though only left had C. I did the whole works then. ACT, 36 rads, 9 mos Tamoxifen, stopped for SE. Arimidex 5 years. Stayed NED until May 2014.
Fell and fx many right ribs, MRI showed extensive mets throughout every vertebra, all thoracic ribs many lumbar ribs pelvis, possible liver, lung, spleen.
Immediate bone biopsy, density scan, bone scan and CT scans of chest,abd and pelvis. Started on Zometa and Femara. TM went from 270 to 60 in 10 mos then started slowly creeping back up. No concerns at that time, only had mild discomfort, not requiring pain relief. Then last of August , increased pain, fatigue.
New bone scans showed no changes, CT scans unchanged.
TM jumped 92 points in Oct. new scans again ordered. Big changes, spot on left parietal bone, whole skull lit up, Entire spine glowing, many stable spots active again, 2 spots in liver and 2 nodules in lungs, 3 enlarged lymph nodes suspicious for mets.
New treatment plan.....Xgeva, Fosladex, IBRANCE Nov 18th started loading doses of Faslodex, Xgeva. Had to get IBRANCE approved first. No observable SE from anything yet, in fact feel much improved. I blame Femara for all the SE I felt because within 1 week of stopping it, I felt wonderful.! 2nd Faslodex loading doses Dec 2
Started IBRANCE Nov 23, so far so good. Labs weekly all lower last week but not enough for worry. Sorry so long, now you know my life history, kinda!
Donna in MO
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Welcome Donna,
I hope Faslodex, Ibrance and Xgeva do the trick for you. I just started Faslodex after Femara failed me. So far, knock on wood, I don't think I have any SE from Faslodex.
I hope these drugs are easy on you.
Amy
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Donna, welcome! I'm glad the new treatments are making you feel better. As I'm sure you know, different women respond differently to different treatments.
I hope Faslodex and Ibrance keep those little buggers away for a long long time.
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Donna, a warm welcome from us too, and wishing you great success with these medications. Please keep us posted, and never apologize for long posts!!
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Awesome news Pam!
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Posting for family member who just finished third cycle Faslodex and second cycle Ibrance. Two curious and unexpected SE. She is experiencing periodic acute anxiety for which the MO prescribes Ativan. This last cycle she had severe headache, which the MO suggested may be the result of the Ibrance. The dose will be reduced this next cycle. Do any of you wonderful ladies have days or a couple consecutive days of anxiety &/or headache? Grateful for this group.
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Anxiety has been a side effect of Ibrance for me. Really weird since anxiety has never been one of my problems. I have only gotten headaches as I am "off" the Ibrance for an extra week this time. I never reduced my dose however.
*susan*
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fam, I have seen reports of headaches both on the Ibrance thread here, as well as in a FB group I'm in for Ibrance. But definitely should be reported to her onc, so that it can be monitored. Hopefully, it will respond to an OTC med and maybe lessen as her body adjusts to her new meds.
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Met my new onc yesterday. She seems nice and does listen. She is considering adding Ibrance but needs approval from my insurance. So far no SE from Faslodex (I've had three rounds) but the thought of additional anxiety and headaches isn't appealing. I know, it's not a guarantee. I just keep wondering if it's worth it.
Amy
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Welcome Donna! I sure hope that your tx work well for you.
fam-good luck to your family member.
I have been on Faslodex for about 4 years with no apparent SE. Also on Kadcyla with SE, but tolerable since it seems to work well for me.
No anxiety or headaches for me.
Dec 16 will be the beginning of my 14th year as a BC survivor of Stage 4.!!!!!
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Denny: Congrtulations on your 4 years on Fas and 14 years on stage IV. That's great records. Hope you continue to lead the score board! I want to grow up like you
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Denny, keep on doing whatever you're doing! So happy for you! You give hope and inspiration to those of us more recently dx'd!
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Wow, Denny! Fabulous!
Tina
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I might need more Lupron! Apparently I'm not in menopause so onc might have to up my dosage, and I might get more IN BETWEEN last and next appointment, so another shot. Yuck
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Hi Amy,
Thanks for the welcome! Had my 2nd loading dose of Faslodex a week ago, also about 5 IBRANCE capsules left to take this cycle.
I have had 2 lab draws, think they were for the IB caps. White count pretty low, but am to finish the cycle and see Onc on Tues. I have not had any observable SE. No headaches, no pain, some decreased appetite, woohoo! And 3 days of slight nausea, just sipped green tea and chicken noodle soup without the noodles, the nausea was for about 4 hours and was able to eat dinner about 5 pm without nausea. Glad you like your new Onc!
Donna from Missouri
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Thanks, I have never blogged before, going to try this, still feeling well,
Donna from Missour
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Donna-ask your onc about green tea. It was reported several years ago to avoid green tea around the time of your chemo since it is such a good antioxident that it might protect the cancer cells from the chemo working.
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Denny,
Wow! I will check with him. It will be sad if I can't have green tea. That has been my drink of choice for about 8 years since I completely gave up Coke ,Pepsi and anything carbonated.
Thanks
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Denny, do you have a cite for that green tea concern? I once read something on the MSK website questioning that, while it was still unknown, if too much Vitamin C could possibly protect cancer cells when we are doing chemo or radiation -- which is why I've never had Vitamin C infusions, as recommended by my ND. But I've never seen anything suggesting that green tea might do the same, although I get the possible association logic. I do 2 to 3 cups of matcha a day, so I'd absolutely be interested in any concrete evidence or concern expressed by a reputable resource. I would also hope that because Faslodex is a hormone inhibitor (not chemo or rads that kill cells), even if true, green tea would not be an issue with it, or perhaps only an issue right around a chemo infusion time. Just my take on it until I see something from the Mayo or MSK or other academic source. But I don't want to have to give up my matcha! Deanna
Here's the cite on Vitamin C: https://www.mskcc.org/cancer-care/integrative-medi...
And here's their link on Green Tea which cites a 2005 FDA report that green tea doesn't prevent cancer: https://www.mskcc.org/search?keys=green+tea
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dlb-I read about it 13 years ago, told my onc. He hadn't heard about it. But when I saw him 3 months later, he told me he had read about it in the New England journal of medicine.
I was discussing this with my chemo nurse last month and she said that we should not even have vitamins (and this includes green tea)..the day before, day of and day after tx.
So the safest thing to do is avoid it those 3 days.
What is weird for me is that after I started Faslodex, green tea and actually all teas, upset my stomach. I also can't eat or drink anything with artificial flavorings-they taste horrible to me.
I am not sure about the tea with Faslodex, though...now that I think of it. I can't have it with Hercptin which I am always on, if not Kadcyla (super Herceptin).
So maybe you are okay with green tea and Faslodex, if that is all that you are on.
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I think avoiding high dose antioxidants with chemo on the 3 days you mentioned is prudent, Denny.
Here's something relatively recent (2014) that addresses using matcha green tea when undergoing cancer tx. For anyone not familiar with it, The Block Center is one of the top integrative cancer tx centers in the world. I would trust their information. http://www.blockmd.com/blog/matcha-tea-and-chemoth...
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Just a few things....I've been on Fas for about 3-1/2 months. Some side effects noted recently, hot flushes that start low in body and work way up to top of my head. I get hot and weak, and sometimes feel like passing out. Anyone have this se? These are in addition to the achy feelings in legs, and pins and needles in toes, and pain in right leg/back/knee. They were so bad yesterday that I went for a reflexology massage. It does help tremendously!
Also regarding how shots are administered, my nurses moved the shots over more to the side, and two nurses give me the shots in each buttock simultaneously. This works extremely well for me, very little if no pain!
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would this include while getting Fas? I love green tea and drink it often, thinking I was doing something good for myself
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Denny - I was not permitted to take anything but a multi-vitamin all thru chemo, radiation, and Herceptin. Once I finished Herceptin, my MO told me I could take whatever supplements I wanted! I'm not sure about this...
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Pajim- just wanted to say a big thank you for responding to me about telling my MO that I felt like punching him in the face. I have felt guilty ever since I said it, so it's really good to know that you get it. Now I do n't feel quite so bad about it! You ladies are the best
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