Starting Chemo September 2015; join us!
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Switched to letrozole today. I took a 5-day break after the last anastrozole dose; oncologist had said I could safely take off a month, but I was too scared. Reason for switch: that weird rash, that may or may not be an anastrozole allergy. Got an appointment at the Dermatology clinic for next week already (!) because the rash biopsy results "suggest" something not good. Hoping the path is wrong. I am so ready to put this whole bc cancer thing behind me, and don't need anything new to worry about right now. At least the skin path is definitely not breast cancer (which I thought it waa, because it started next to the scar).
I'm wondering was the anastrozole working at all. One dose of letrozole, and man, am I having big sweaty hot flashes. Only rare mild ones on the other AI.Must be my active imagination
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Hi all Tessu, el Tigre and all friends out there I check in and post occasionally and made friends with dear partners in BC. I often ask questions. I never thought I would feel lucky to be triple negative because you all that are taking the Aromatase Inhibitors have so many side effects.'I just finished Xeloda an old drug for Stage 4 that they moved up for stage 2 -3 triple negatives. It was hard to take but different than strong Chem AC and Taxol which I took as neoadjuvant. Made me have to eat and gave me esophagitis gained 30 pounds after the weight loss fro strong chemo now I am trying to loose weight.
But here's the question:
Anybody have any other cancer or tumor diagnosis since being diagnosed with breast cancer?
So far they found a menigioma in the brain for which I get an MRI every 3 months
And I took a fall cracked 5 ribs or so and just hand a new tumor found incidental on the cat scan of my ribs and abdomen so much pain below the ribs my PCP said not my ribs
They found a tumor in my pancreas for which I had a core biopsy yesterday through an endoscope from my intestine into my pancreas. I do not know if this is too much information. Please excuse if it is too much . It is just that I post while waiting in hospital. The tumor is in the"tail" of my pancreas and I am waiting for biopsy results could be BC but otherwise it is an islet cell tumor which is a bummer too. So far they said I need surgery to remove tumor , remove my spleen and take out my gall bladder which has a gallstone.
All this because of a fall in my handicap proof bath tub. I took the fall not sure why. My mother with whom I live is 100, in great health and takes extra care not to fall. Yet I win.
Oh well I definitely got my fathers genes. She has no family history of any cancer and is a healthy 100 year old. My paternal grandmother and aunt both died with probable breast and or ovarian cancer. I asked them to compare my mother and my genes but the doctors are not interested.
I think it would be a great study trying to figure out how to do the genetic comparison myself. I had myriad genetics test done when first diagnosed. I made the cut off of 59. Unbelievable but if I were 60 I would not have been eligible for the genetic testing. They found variants of "unknown" significance including ATM and some variants around BRCA but not BRCA called BRAD and BRIP. I wish they were more forthcoming with gene analyses and not push them to the side.
Anyone else out there with anything in the gene analyses and new tumors? Paternal family histories?
Sorry if this is "Too much info" I use this site as a fall back and for consolation. You all are so brave!
Thank you
JulieK
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julie wow what a rough ride to go through this past couple of months. I hope the prognosis is good please post a follow up and tell us how your doing. In my case the refuse to do a PET so I could have tons of stuff but I will never know unless I have symptoms.
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Julie, I'm sorry you are having to deal with so much and hope for a good pathology report for you. I haven't had anything diagnosed but every ache and pain makes me wonder if it's mets and i have a lot of aches and pains. I was 52 at diagnosis and I could not get genetic testing because i did not have enough direct family history of bc.
Guru, my mo offers to order a ct every time I start stressing out about something but I'm trying not to unnecessarily expose myself to any additional radiation. There's been no discussion about another pet scan.
Even though this board has gotten a little quiet, I think of you all regularly. I wish you all a very happy holiday season.
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Hi all.
Julie, so sorry to hear your news. I wish you well with your upcoming surgeries.
My only new thing is an underactive thyroid, which just requires a daily thyroxine tablet. I have no family history of BC but my maternal grandmother died of Hodgkin's lymphoma at age 26. And my mother has recently been diagnosed with a sarcoma near her left elbow and is under going radiation before surgery.
Wishing everyone seasons greeting and a happy and healthy 2017.
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Julie, I'm so sorry. Big hugs. I am a brca2 mutant on the paternal side. My dad is fine and so is his sister. My pgm died of ovarian cancer. There is no breast cancer anywhere. I have had 2 clean PET scans, lung X-rays, and 2 melanoma biopsies. Nothing so far. I'm praying for you tonight, sister. ❤️❤️❤️ Third round of tumor markers pending lab results.
Tessu, big hugs for you too!
I'm 6 months into my clinical trial and has my second Prolia injection. I am holding steady at 129 lbs for 17 months which is at the lowest end of normal for me, so I let it go. I'm tired and mentally foggy and stiff. But not so foggy that I couldn't win an emergency motion the other day against an entire legal team! Suck it, cancer!!!
So thankful for you all and for another Xmas Praise God.
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oh Julie, I'm so sorry to hear your news ((((hugs)))) Hoping your upcoming tests and surgery go well ((((more hugs)))
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Julie hugs to you.
Ladies happy holidays and happy new year.
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Thinking of you Julie today, and hoping for the best possible outcome for you (((hugs))
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Hello September'15 warriors, even if I do not post so much you are all in my thoughts and prayers
It has been very long since posting but life has a way of keeping me busy.
To recap:
Diagnosed with IDC on 8/28/15.
Port placement 9/10/15.
First infusion on 9/11/15. On 9/14/15 my tumor was not palpable anymore.
Had a rough time with chemo so I had a break during which I had surgery on 11/20/15: PCR
Finished last three rounds of chemo on 1/21/16.
Started rads 33 rounds.
Finished one year of Herceptin on 9/30/16.
Got de-ported on 12/23/16.
Although it has been rough I am happy to be able to dance with my husband again, getting more strength everyday and thankful for being here.
Hugs and more hugs to all of you!
And this is me and hubby on Christmas Day 2016
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Flower, you look great!
((((Julie)))).
Sending wishes for a happy and healthy New Year to all of you.
Octogirl
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Octogirl Happy New Year to you too
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flower you look great. Cute hubby.
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Thank you shop gal, he is the best! Hope you r doing good
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I'm doing pretty good. Just had my 6 month recheck from my July mamo that had a few areas that my team was watching. Today's mamo: clean! And since I lost 60 lbs last year my breasts are no longer dense which they said makes my mamo easier to read. Now off to mo & ro on wed for another checkup and my bs on fri to discuss mamo results and hopefully a referral for plastic surgery consult to reduce & lift the right boob to match the left cancer boob ( which could just get a lift ). Let's hope 2017 is starting out better than 2016.
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Hello shopgirl (and all)! Glad to hear you're doing well. I have been on a very close schedule to yours over the past year plus and have followed your posts over that time. Feels like we were/are comrades in the fight. I also just had my follow up appt. Had a mammo in June and a breast MRI in Dec. Will stay on this schedule for a while due to high risk for recurrence. Am glad for the all clear results. Also watching the blood work closely. Have the added trouble of side effects from Letrozole to contend with but taking it in stride. Good luck with the p surgery consult. I just added my missing nipple and will get the finale tattoo step in Mar. i might actually be done then. Wow!!
Sending Happy Healthy New Year greetings!!
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I've been reading here regularly but haven't been posting because I was being eaten alive by anxiety waiting for blood and biopsy results, and didn't want to dump it on anybody here. Just heard today that the bloodwork and the regular path on the skin biopsy are ok, one special biopsy is still in progress, but I'm guessing it will be ok based on the other normal results. <insert HUGE sigh of relief>
I had gotten very few side effects from anastrozole, which I was on for almost a year, but since my switch to letrozole about a month ago, I've been waking up very stiff and sore all over. Takes awhile to get myself going. Same thing happens but milder when I sit for too long. Wish I could switch back, but doc said don't, anastrozole is probably what caused my rash (which still doesn't have a definite diagnosis, but is NOT new cancer, so I'm not complaining --- much).
Wishing everybody here a relaxing weekend --- and better weather than the windy sleet storm we've got here
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tessu, I thought I had posted earlier, but it seems to have disappeared....so posting again to say yay!!!! for good results!
Stay warm and dry, all
Octogirl
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Yay Tessu! So happy the results were good. Your Letrozole side effects sound exactly like mine when I started in April. There were days I could hardly walk when I got out of bed. Mine SE's have eased dramatically now I would call them very mild. I'm not sure why they improved but I noticed it after my dermatologist put me on Jerrosil drops for my thinning hair. I've been taking 10 drops in a small glass of water every day for a couple months. No change in hair (darn it!) but my joints feel sooo much better. Hot flashes are the pits though. Haven't figured out how to address those
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Hi Shelley! Don't get me started on the hot flashes! I didn't notice any change in those on anastrozole compared to menopause before bc, but on letrozole holy cow! Maybe the anastrozole wasn't effectively blocking estrogen for me. Good to know your leteozole pain/stiffness SEs eased over time. Easier to tolerate knowing they're temporary
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Looking good Flower!
Shopgal - happy to hear clean mammo and congrats on the new you after losing 60 lbs (wishing it was under different circumstances of course). That is great that your breasts are less dense so they have a clearer view of the mammo results.
Tessu, also congrats on the good results from your biopsies, good vibes on that last one you are waiting on.
I hope everyone's SE diminish. I have SE as well. Hot flashes I found acupuncture helped and my naturopath had other recommendations as well (Black Cohosh) but I'd check with the docs. I'm doing acupuncture for my hot flashes from tamoxifen and lupron shots. I used to get acupunture once a week and now i get it every other week. Helped with joint pain too.
Latest for me is I had a fat grafting that went well, but a little nueropathy from it so I am taking gabapectin at the moment. Next up deep tissue massages to prevent scar tissue from lumping up the donor site ( tummy) and then in a few months ovaries are out and lupron is stopped. I think that lupron is messing with my body, so the sooner the better to stop it.
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The rest of those tests results are finally in: no malignancy of any sort, nothing else bad. Still not sure what the rash is, but since at the moment isn't gone but doesn't seem to be spreading, I'm no longer freaking out about it. Dermatology is supposed to phone about it sometime; the call today was a control by oncology to see how I was tolerating the letrozole.
I told my oncologist that I was looking to travel (alone) this spring, and did I need to get my brain or anything else imaged first (because aggressive path), or spend $$ for extra travel insurance to ship me home if necessary -- and he said no, "you are no longer a breast cancer patient --- you are a woman who has had breast cancer and was treated for it. As a doctor I cannot use the word "cured", but you have received intensive treatment for a small tumor that had not spread to the lymph nodes, so in my eyes you can put it all behind you." Well I KNOW by statistics there's a significant risk of recurrance/mets --- but hearing my doc say those words aloud to me --- plus all the reassuringly normal tests results --- honestly does put my heart at ease. Onward!
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Tessu I am sure that is a huge relief for you. I do understand your concerns I have them too. I have found that the treatment does have side effects are hard to pin down compared to symptoms of recurrence. This is the case for me. Gabapentin caused me to have incredible headaches that scared the dickens out of me and led to a brain MRI that was negative. When I went off the med my headache went away. For me Letrozole caused incredible bone aches scared me to no end. Also this stupid tingling in my feet and hands that persists. It freaks me out and makes it difficult for me to know what is important and what is just annoying.
I think that we just have to stay as positive as possible and press forward. I hope you enjoy your travels it sounds like a great new chapter in your life.
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AWESOME NEWS TESSU!
Exercise when i was on Taxol I had itchy nueropathy that the Gabapentin didn't even touch but Lyrica did. Lyrica helped me a great deal. Have you asked about that, it is addicting (I didn't have any problems but I thought i should mention)? It is $$ expensive though
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About once a week I've been getting "updates" about my mysterious rash from that young but eager hospital dermatologist --- usually something like "Hey I've been thinking, it may actually be <insert weird unpronounceable latin term> but don't worry, the treatment is the same, just get intouch if it starts to spread really fast again, because there's still a small chance it might be < insert weird unpronounceabIe latin term for the initial very dangerous untreatable disease>..".The most recent message came a couple days ago. And I just broke out laughing. The rash has almost dried up, it doesn't itch or bleed anymore, and isn't in any place that shows from my sleeveless gym clothes. So --- I've stopped caring.
I'm fine And I just invested a nice chunk of my savings on a Bucket List trip. My oncologist said I don't need any scans or stuff (to look for developing mets) before I travel, but when I said I wasn't sure whether to go this spring, or wait one year, he quietly looked me in the eyes and said "Go NOW." So that's what I'm going to do. Gotta LIVE0 -
Tell me about your bucket list trip...Im on first one. To see snow and learn to ski...great to be alive.
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Woohoo Cinque! Is that Switzerland? Or where! Gorgeous scenery!
I signed up (alone, husband and friends not interested) for a group trip to Japan during the predicted peak of the cherry blossom season. There is a visit to Hiroshima, which has been on my Bucket List ever since seeing the Enola Gray at the Air and Space Museum (the one outside of Washington DC, near the airport). I want to visit ancient temples, see a different type of Nature than in places I've lived, and eat exotic (to me lol) foods
The trip gives only 9 days actually there, but the longer one sounds like more than I can handle at this point --- although I've been working hard the past seven weeks to build up my stamina and muscle strength (aerobic stuff plus Pilates). Maybe I'll take the longer trip after a few years Australia is also on my Bucket List
--- what time of the year is best? What are cool things to see0 -
Your trip sounds amazing. Seeing snow and learning to ski waa the first thing on my bucket list. This beautful scenary is from Slovenia totally random choice....Im with a friend from work who is from Slovenia so lucky to be with a local. I still cant believe Im here. I was on the receiving end of some very good advice....write down what you want to do, pick a date and book it. Thats just what I did and Im not looking back. First time leaving hubby behind but I needed to do this. Australia is vast and beautiful Ive only been to capital cities. On my bucket list are gorges in the Northern Territtory, drive Ocean Road. Our beaches are second to none. I think September to April good time to visit. Bearing in mind our summer is very hot so maybe avoid January/February. This trip is very symbolic as far as moving forward goes I felt stuck...not anymore xxx
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I've never been to Japan but have family (a nephew and his wife, who is a Tokyo native) in Tokyo: my sister and daughter have both been several times to see son/cousin and love it...and I love Japanese food....friends say Northern Japan is particularly amazing but I'd love to see it all. Can't go this year (but heading to Australia in May) but hey tessu, if you decide to do the longer trip someday and want some company, drop me a line! and have a wonderful time!
As for Australia, I've been mostly to Sidney, Queensland and the Great Barrier Reef, so much still to see but it is one of my favorite places. The people have a lot to do with that. When I came home after my first trip to Oz I told everyone who would listen that if it wasn't for the fact that I have kids and grandkids in the states and hate long air plane rides, I'd move there.
Octogirl
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I would love to travel right now! LOL
HI,
I am in the mist of reconstruction and I was wondering if anyone on this thread has had a Latissimus flap surgery? I am weighing the pros and cons of it. we initially went the less invasive route by just using what I was left with and adding implants and 1 round of fat injections. After consideration I might need to do the Latissimus flap anyways, ugh.
Has anyone had a flap surgery? How was your recovery & result? I know we are all as different as snowflakes
I hope every one is doing well on this crazy journey
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