Chemo starting December 2018
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Believe I’m the last of our December group to finish chemotherapy. Next Tuesday will be my last Taxol! Was a tough start, considering the low grade fever with flu/cough from the very first infusion. But we’ve made it!
Next phase, hormone therapy. If any of you have started with tamoxifen or other hormonal blockers will you chime in with your experience so far?
Hope all is well with everyone.
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Congrats Angie! You made it! What a trip, right?
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Angie, us HER2+ folks have another 8 months of Herceptin infusions, but that is a piece of cake. I get my third one tomorrow.
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Hi Angie, belated Happy Birthday! I started Tamoxifen 3 weeks ago, I take 20mg once a day after dinner. So far no side effect yet. I am 48 but menopausal (I had hysterectomy in 2015) I might switch to AI from Tamoxifen in few months.
I am 7 weeks PFC, no hair growth yet. I see a peach fuzz on some parts of my head but no hair yet... I’m a little worried....hopefully my hair will grow before summer starts.
Have great day everyone
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Angie- Yay your almost done!! Hoping the time until Tuesday goes quickly!!
Anxious- Good to know about taking it with dinner, I'm not sure when I'll start my pills or what pill I'll get, guessing Tamoxifen related to being premenopausal. Happy to hear your not having any SE!!
Ok ladies feeling blonde....PFC???
Sending thoughts and hugs to all you strong ladies!!
~ 💗Katie
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The hats are gone. Half-inch, maybe.0 -
mcbaker- Yay for hair and no more hats!!! 😁😁
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Mary we could be hair twins lol
I'm still going to wear my hats or scarves out. I find I really like them, but I was raised to be a hat person.
ANGIE!!! Yes the end is in sight WOOOOWHOOO!! So happy for you. What a bumpy road this is for all of us.
I saw the PS this morning and he's pleased with his work and my recovery so far (1 week post surgery). I still have this blasted drains!!! 6wkkes and I'm SO over them. He said I should be fine to start radiation soon.
Anxious thanks for letting us know about the tamoxifen.
My neighbor has been down graded from stage 4 to stage 2b. She's 1 year ahead of my diagnosis and a good source of in your face support!! She's having an awful time 16 months out and her body hates kost of her meds 8(
Be well everyone and have a great day!!
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Hi Friends!!!
Angie....YAY!!! You are almost there....so happy for you!!!!
Nanette...how are you feeling?
MC...you hair looks wonderful!!!!! My head has a lot of hair....but it is growing ever so slowly. Maybe its a quarter of an inch-and that's the long ones! And the color....its shades of gray....not very pretty...but its HAIR!!!
Yesterday I saw my breast surgeon and MO. I was surprised that they wont do any testing until six months after last radiation treatment. Next week I start on Arimidex. We went through all possible side effects (UGH), but I was told that sometimes side effects can be reduced by just changing the brand of the drug. Now I have a break and don't see them for 3 months!!Be well everyone!
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Mary, I had forgotten that herceptin can be a much longer process. Glad to hear that it’s milder than what we’ve all been going through. Hope infusion went smoothly today. BTW, your hair looks gorgeous! Can’t wait to begin seeing some growth for me in about a month.
Great to hear from everyone! Sounds like you’re all recovering well!
Hugs
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Such good news and vibes on here today! Yeah Angie, almost there!!! Yeah, Nanette and Mary, rocking the hair! I love that color! Mine is coming in slowly and I'm not thrilled with the color. Dark gray and white - I've been blonde my whole life, though I will admit the blonde had some help in the last few years, lol.
As for the hormone blocker, I'm on lexatrole. So far, no noticeable SEs. I had one afternoon where I suddenly felt incredibly sad/depressed/down and I broke down crying. It made me start thinking about all the bad things I'm still struggling with and I started cycling down into feeling even more sorry for myself and more depressed. But I had a moment of clarity and realized, I'm not really that sad, I'm not really that down because things are going well. So through the tears I looked up SEs and yes, mood swings/depression can be a SE. I realized my emotions were chemically driven, not fact based. So I rode the wave. I texted my daughter and told her what I was going through and asked that she texted me throughout the day with things that were going on in her day, just to help me stay grounded. It worked. The mood lifted within an hour and then I had lovely texts throughout the day with daughter. So if anyone else is experiencing this, I'd recommend taking emotional stock when you feel so down and make sure it's not just chemical. Knowing it was, helped me tremendously in just riding it out.
Kber and Penelope, hope you're doing ok too! What a great group on this forum. I will try to post a pic of my head to show you how much further behind Mary I am. For reference, my last chemo was Feb. 8, followed by 4 weeks of radiation. But the radiation should not have affected hair growth. Mine is slow to return and I too was worried, but am becoming slightly less so now.
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Becky- good for you finding a way to reground when your thoughts and the darn medication SEs were getting the breast of you!! And like you said you got texts throughout your day from your daughter!!
I'd post a picture of my peach fuzz but it's kinda hard to see lol.
I hope all you ladies have a great day!! Sending long distance hugs!
~Katie 💗🤗🤗
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Hi all. Yes I love this group! It's my "home base" if you will.
I'm ok. Still queasy 2 weeks post chemo, but I'm getting better. All told, I'm down about 20 pounds over the past 5 months of treatment. Thing is, I am overweight so had some cushion for sure! I want to keep it off and loose another 20 or so over the next year, but I'm not going to put a ton of pressure on myself beyond maintenance.
Now hot and heavy into surgery planning and reconstruction research. Lots of tests lined up for next week which will inform the surgical approach. I'm "interviewing" 3 plastic surgeons who all come highly recommended. I want to be comfortable with the fit and vision.
Happy news - my energy levels, and thus general interest in the wider world, is rebounding. My husband took his first business trip in 6 months and literally came home to a different wife! I still tire easily, of course, but the difference is really noticeable and such a relief!
Nothing besides the finest peach fuzz on my head. I just bought a bottle of castor oil. I'll report back.
Happy Thursday and peace to all! You've all been such a beautiful source of support, information and encouragement! Thank you!!
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Kber- Yay your starting to feel better!!! Right now i think peach fuzz is awesome since there are so many of us rocking it!! I hope you find a PS you love and really connect with!!
Have a wonderful day!!
~Katie 💗
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Well it's a minute by minute rollercoaster, isn't it?
Just got back from meeting with my MO, post chemo. I told him that when I met with the SO earlier this week, the surgeon thought the felt something left in my breast and that he observed that my nipple, which was inverted 6 months ago, is still a little off compared to my healthy breast.
This triggered my MO to be extra diligent in the exam. A month ago he told me he could not see or feel anything suspicious. After the exam he doubled down and reasserted that he felt nothing. Mind you, I've got an MRI and ultrasound next week so we will have more data later. Anyhoo, now I'm thinking a small lumpectomy and breast conserving surgery is back on the table - yay me!
But no, there's a twist. At the beginning of the process I tested positive for the CHEK2 gene, which was listed as having an "undetermined significance" on the potential of developing breast cancer. Since then he's done a bunch of research and while CHEK2 is not BRACA by any stretch, he recommended I seriously consider a prophylactic bilateral mastectomy.
BMX is where my head was at 6 months ago and I gradually came around to the idea of a lumpectomy. Now I have some additional thinking and research to do. I'm think I'm OK with the idea. Just need to let it roll around in my brain for a bit.
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When I was first diagnosed, a mastectomy was the only thing I would consider. When it came down to the wire, I was talking lumpectomy, and they were talking mastectomy. The more radical step is safer.
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Finished all my chemo last week. This is how I feel:
1. low energy
2. cold
3. cough
4. chills
5. rash (like hives) for over 2 weeks now
.....hmmmm anyone else finish chemo and feeling all the worst effects now at the end.....??
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These are difficult decisions....I was gearing up to the mastectomy and then my surgeon said we can still look at breast conserving surgery or lumpectomy. The second MRI showed "non-mass enhancement" the radiologist "feels" is consistent with further cancer disease.
I have now asked to see if we can test the area so an MRI guided biopsy will be done to confirm disease and then will go ahead with mastectomy. Once you move forward you can't change your mind.
I also have a family history of BC but do not have the Brac1/2 gene as I was tested. I thought about a double mastectomy as well but now having gone through chemo, will do radiation if I go ahead with lumpectomy or mastectomy I thought this is enough.
I will prefer the lumpectomy and if necessary in the future, do the mastectomy to the affected breast. The other breast shows no disease so while I wait one year for reconstruction....I have more time to reflect and consider whether I want the second mastectomy.
I think its important not to feel rushed into making a decision and its okay to even change your mind.
Good luck to you and lets hope we all get better soon!!!
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That really sucks that after everything you've been through this comes up as another issue! I chose BMX when received the dx as my aunt did the unilateral mastectomy and chemo and sadly got it in the other breast worse only 5 years after the first and sadly lost her battle. Bottom line you have to do what you feel is right and what you feel you can mentally and physically handle!! So many thoughts and prayers going your way for the mental strength to research and make the best decision for you!!
Countca- many of us recently done wth the liquid hell are feeling our SEs more as wre get farther out, possibly related to no longer having the premeds hiding our SEs?!? Keep an eye in your symptoms and make sure your not getting sick!! Good luck! This topic is being discussed in the weekly taxol group to.
~Katie 💗
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kber, hard decisions, I hate them and the necessity to make them. Go with your head and do whatever you think is best for you. And as always, we're here for you!
Count, yeah, the effects seemed to accumulate. I'm three months post last chemo and about a month post radiation. Still feeling tired. Still have some neuropathy and other issues. Good news, it gets better. After my last treatment I had around 2 rather bad or at least blah weeks. Didn't feel much better even three weeks out. Started feeling better then jumped into radiation which has it's own form of extreme fatigue. But, again, it gets better. Yesterday I spent the day walking around the National Arboretum in Washington DC with my 21 year old daughter, then walking around on the national mall. She got tired before I did!!!!! (And she's a thin healthy college student who walks a lot!) Now, when we got back to our room to rest, she was able to recover a lot quicker than I could - I was done for the evening and we ordered Chinese in and played bananagrams. So there's a comparison if it helps. You'll get there, slowly it seems, but you'll get there.
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Becky, I’m not too often stateside, but when I am, it’s in Virginia! So, next time you’re out on that side of the country, you’ll have to let me know. I’ll be back home for the holidays in December!
Hope you’re having a great time with your daughter in DC.
Kber, great to hear you’re feeling better each day. And it’s very wise of you to think over mastectomy vs breast conserving. And reconstruction is also something to seriously consider. Having it done right is so important! I kinda rushed my decision. Had lumpectomy and recon on same date. Wanted to get it all done at the time, which was a month after diagnosis. My mind was not completely clear, could only think of being rid of the tumor and it’s impact. Now I wished I had waited and researched my options a bit more.
Countca04, keep an eye on that cough/cold. If it increasingly worsen with breathing difficulties, continued chills with low grade fever and flu like symptoms; itcould be pneumonitis. A serious lung condition.
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Angie, I'll keep that in mind - it would be great to meet you! We had a wonderful time in D.C. It's one of my favorite cities to visit and son seems to be doing pretty well for his second week living there.
Kber - when do you leave for your son's graduation and how are you feeling?
Countca, feeling any better yet?
Last night, finally, I lost 1/2 of a fingernail. It was not painful and turned out to be a very little deal. I'm keeping a bandaid over it still because the slightly exposed part of the nail bed is a bit tender, but again, not really painful. I think I have at least one other nail that will follow shortly. And some toes look/feel a bit funky. Wondering if they will follow suit. Chemo - the gift that keeps on giving.
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yesterday was last round of Taxol! So happy to be done! AC was much kinder on me. But I stuck it through and finished all 12 rounds! Prednisone really helped to make it possible, but the side effects! One of which, a very healthy appetite. I’ve gained a few pounds and a moon face, but that’s the trade off for Taxol.
Hopefully, will keep my nails, but from what I’ve read, seems SE’s don’t stop even when chemo does. As Becky said, the gift that keeps on giving.
Hope everyone is doing well!
photos: left: feb 18, day before 1st round of Taxol. Center: Apr03, 6 wks of Taxol, suffering from pneumonitis. Right: 15 May (today), after yesterday’s final Taxol! 6 wks of prednisone.
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Hi Becky - happy Wednesday!
We have a 7:00 am flight Friday morning. Our pet sitter (bless her!) is driving us and then camping out with our fur babies.
I lost a toe nail too. Also completely painless and I had half a nail grown in underneath. Thing is, it was a ugly toe nail to begin with, while its daughter is growing in pink and healthy. I think, knock wood, that might be it for lost nails. The rest I'm keeping really super short until the white parts grow out.
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Your April 3 photo shows how sick you were. I like the moon-face. How much weight have you lost through it all?
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Angie - congrats again on finishing! I found that the first week post chemo was actually physically tough, although mentally easier as I began processing and internalizing the fact that I didn't have to go back to the poison chair. Week three, I'm stronger and feel better. My taste buds are only improving slowly, but my stomach has settled down and I'm more "regular" if you know what I mean. I really felt I turned a corner day 9 post chemo where I realized that the gains I was making I was going to keep. Now I'm getting a bit impatient that I'm not fully recovered yet, but I know that's silly.
One side effect that I just started - pretty intense aches at the end of the day. No fever, sore throat, or cough. My MO thinks it could be related to recovering blood counts, like my bone marrow is making up for lost time. I'm also more active than I was and maybe my muscles are just sore. Advil is pretty effective, though, so it's manageable. What I'm trying to avoid is being hyper attentive to every ache and pain, every body change. I've spent so much time and energy being vigilant, but sometimes a sore back is just sore back muscles and not anything to write home about.
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Angie, you look great even with "moon face." And happy day - no more treatments for you!!!!!!
kber, I had an awful lot of aches and pains in the first few weeks following chemo. I was becoming more active too, but I think it's another SE of recovery. I've had plenty of sore muscles throughout life and these were just a bit different. But, they went away. You're right though, about not over analyzing everything. Sometimes a sore back IS just a sore back, lol. Taste buds seemed to take forever.
I promised hair pics so here they are. I am not happy with how thin it still is. It's taking forever. But there are improvements weekly so I guess I'll have to be happy with that.
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Becky / Angie - you are both beautiful!
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Becky.... love your hair!!
Angie.... your moon face will disappear...mine just recently faded sesy... about 2 weeks ago I noticed I had cheekbones again!! I think it's more grim the steroids than the taxol. (Steroid cause the weight!)
I too have worse pains in my legs and feet at night. My MO increased the gabapentin to 2 300mg at night and our does help ease it away.
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Angie- congratulations on being done with chemo!!!
Angie and Becky wonderful pictures!!
kber- interesting about the bone marrow regeneration possible reason for soreness. It does feel nice, even though sore, too be able to do more without feeling like I got hit by a truck. 2 weeks out from chemo and still antsy for things to move along quicker with recovering.
I hope all you ladies have a wonderful day!! Here's my peach fuzz look...
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