Starting Chemo September 2015; join us!
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Cajun, Wow! You look gorgeous!
Edwsmom, I've already lost one nail. It was creepy, but not as painful as I had feared. Pretty sure I'm going to lose a couple more, but I'm not feeling quite so nervous about it now. My MO recommended that I soak my fingers in epson salt a couple times a day. I've only managed to to that once, however. Been feeling so yucky, it's hard to keep up with all the various chores I'm supposed to do.
Really wishing I had skipped dose 12 of Taxol. It's been a week and my fingers and toes are still feeling weird. Not numb at least, but not quite right either. They were OK before that final dose. Sounds like it would have been fine to just let that one go, dammit.
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I know I don't post much but I have a question about hair, or really, the lack of hair.
I have a nice wig, but I always felt fake in it, so I've worn every variety of scarf.
I'm starting to feel annoyed with the idea that I have to hide my bald head. It's not shameful to be bald, why do I have to hide as if something were wrong with me?My hair is starting to come back, barely, but with a definite old man look, LOL!
Does anyone just go bald?
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Lady, I go bald all the time. I'm in an engineering work environment where half my colleagues are bald men on the verge of retiring. I finally fit right in! Also, I go swimming a lot and having a bald head in the winter has been amazing! Huge time saver, the water feels great, and cold/wet hair in the chilly air is definitely not a problem. I wear my fleece-lined football hat when my head gets cold, but that's it. I rip it off as soon as a hot flash hits.
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If I lose my hair permanently or if I'm bald in the warmer months, I'm wearing nothing. It's way to warm and uncomfortable. Who cares what others may think. Where I live there is so much diversity that I"d probably just slide right in.
Saw MO today. Started talking about hormone suppressant stuff for after radiation. 3 options:
-Tamoxifen
-Ovaries removed- I'll be 52 end of Sept, close if not in menopause so don't want another sx.
-Monthly shot of I forget what it is + an AI. She's found in recent studies that this combo is more effective at preventing recurrence than Tamox so I'll probably do this even though I hate shots. As we get closer I'll find out what this is about as the focus today was about my labs and how I'm doing (great so far).
When deciding the traditional Tamox vs AI she goes by are you in peri or menopause when you started chemo. I was wondering this since for all I know I could be in natural menopause now since 2 months of 0. But for them, they wait a year before they call it menopause and if you're on Tamox she has you do 2 years before she switches you to AI.
Tomorrow...................the chair after 3 weeks. Time flies and goes so slow at the same time!
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MN Lisa, scary how far the neuropathy has gone, sure hope yours clears up significantly.
Carolina Amy here is a pic of my little pillow. Let me now if you would like me to make you a set! Is not real puffy, just right for under the arm. I made my friend's pillows in flannel but this one is cotton
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For those of you who did the ooph sx, does this mean no hormone pills for you? That's it? Now I"m leaning toward this as I don't know if I can stand 10 years of tamox or AI or shots/AI every month/day whatever.
What's the recovery from ooph been like? BMX wasn't bad for me. Can you take care of yourself ok after sx? I didn't realize I had options. I thought at 51 with a period still and close to menopause it'd be Tamox then on to AI later on. TIA
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Cajun - Congrats on being done, fellow mutant! I can't believe how great you look.
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recovery is very easy from the oophorectomy. I did not need any pain killers.
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Thanks JoJo. I'm considering this route now if it means no pill popping for years. I'm alone so I have to be able to do my daily necessities without help. I was independent after BMX and thought that was an easy sx. The drains were the only PITA. Does insurance cover this sx or is it viewed as elective as you can always pop the pills?
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hi.. I still pop the pills lol. I think the Onco will change me from tamox to an AI.
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artista, I will take AIs after my ooph. You still make estrogen, just not as much.
MN lisa, I'm so sorry about the neuropathy issues. What hard choices to have to make. Wish i could send a big ol' hug your way.
It's official... The bell has been rung! In fact three times by each one of my children. There was a full house at 5 p.m. last night and everyone cheered. It was a great end to phase 2 of this journey.
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Thanks for the info! So did you do the ooph because of your age or how did you decide to do it despite having to pop pills? I was hoping to eliminate that portion of it. I'm 51 so I'm close to menopause. Trying to figure out what the benefit of ooph would be for me vs just popping pills. Seems just looking at who's having it done that it's the younger crowd.
Your son is cute Cajun as are you! Congrats!
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Thanks! A few reasons for me to pick the ooph over Tamoxifen. One is that AIs are more effective than Tamoxifen, long term. Two, I have an increased risk for ovarian cancer with BRCA. Three, my cancer is 98-99% ER+ and, with such a great risk of recurrence, reducing estrogen is really pivotal for me. Of course the downsides of menopause and AIs are not so good... But I'm more worried about the cancer in the end.
Eta, I just realized question wasnt addressed to me, sorry! Lol
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Why sorry? Thanks for sharing. I don't have the gene thing that you to but my ER is 95 and ki67 is 50. All these #s scrambles the mind. I appreciate knowing AIs seem to be more effective than Tamox so thanks for that tip!
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Cute son Canjun!
When is everyone getting a follow up echo cardiogram or MUGA scan for their heart? Before/during Radiation or after? I'm not sure when I should get one and I am thinking about doing a trial that would require one anyways.
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ElTigre I am prob getting one after rads. My 3 month follow upwith mo is in March but the appt is 2 weeks after I ends rads. So the echo won't be until after mo appt. I am sure my ro will want me to heal before any thing would touch my chest.
Cajun aww your son has your eyes. He's a cutie. And I love your scarf.
Jojo where in philly did you do your treatment? I'm at Jeff.
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Cajun - What a great picture - your son is adorable.
Big thanks to Lila Claire, Carolina Amy, El Tigre, Shopgal and DLcygnet for your support. Your comments meant a lot to me.
Surprisingly, my PA was not concerned about the muscle weakness / pain. She said it's par-for-the-course for Taxol. She remained much more worried about my neuropathy which (thankfully) has not gotten much worse in the past week.
So I completed weekly Taxol #10 today! PA said MO was very focused on me getting through at least #10 of 12. We'll take it on a week-by-week basis for the next two treatments depending on whether the neuropathy gets worse or stays stable as it did last week. I can see the finish line from here!
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Thanks Shopgal. Sometimes I feel like I'm in the dark with my hands out searching for the light switch
Minnesota - Nice congrats on completing #10. Praying your nueropathy does not get worse but better
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Minnesota That is a tough choice you are facing. I constantly feel that with BC we are ordering off a restaurant menu where all the food sucks. We try to pick the least sucky choice. Would your doctor consider letting you go every other week for the last doses ( Still sucky but slightly less so not sure) Praying for you gal.
Cajun Happy day ! super cute cutie cute kiddo and love the pink wig! So worth it to get to the other side of that river.
Artista It would so be worth it to do an ooph and get out of meds but instead they just switch you from Tamoxifen to Arimidex or another AI. The Tamoxifen gets the estrogen ovaries produces. The AI gets the estrogen from where the body produces the rest. GRRRR OH and I think JOJO had a davinci or an orthoscopic oophrectomy definitely way easier to recover from than my surgery which was open abdominal.
So I have my prescription of Arimidex today and had Herceptin only.
Still I am having a happy day because I got the drains out from my reconstruction FINALLY. But when they sewed me up after surgery still pretty tender in my abdomen but Its on the mend. On even more sunnier skys I am happy to have the scars healing and now my new breasts look much better and dare I say that these nipples look real enough to fool a baby soo. Happy cheery about that to. My mom is so sad because I didn't let her come for Chemo ( she could not have handled that) she wants to stay a bit and cook and drive kids. AHHH something nice to report for a change.
For you gals who have lymphodema Can I pick your brains? I had double breast cancer......So during my BMX my sentinal nodes ( both sides) were in the very back of my arm pit. Way back there. My BS dug a pit to get to them and my PS tried to fill and close the gap the best he could to prevent LE. Thank god but my MO has not let anyone put an IV in me since surgery. I even had to have a foot IV for my surgeries ( two for the last one....blah). I had some swelling my first month but after a sleeve and pure dumb luck it went away.
Anyway I have sleep apnea and I might have a consult with the ENT about getting my tonsils out to see if it will do away with my machine. That made me think about leaving my port in a bit longer than July( when I finish Herceptin) in case I need more surgeries etc.
I am trying to decide when if ever it would be safe to have an IV again. Maybe my port and I will be around for quite awhile.
Thats bittersweet because I hate my port. Sometime I will post gross out pictures to show you what happened when they put my port in ... or not because the pictures still gross me out. Anyway I have quite the scar around my port area right in my neckline. I really hate it.
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I had my second MUGA scan on New Year's Eve. No change since my first one.
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Congrats, Cajun!
I'm three weeks PFC, and am having an echo on Thursday. Which is just fine, but AC heart damage can show up years later. I guess it gives me another baseline before starting rads (chest wall) on Monday.
Minnesota Lisa, it can take months for neuropathy to resolve. I still have some in my fingers and toes, and there's been no change for several days. I'm also still experiencing nail changes, and my nose and eyes are still running. Muscle pain and weakness is gone. I'm out of shape now, but that feels very different. I had DD Taxol, with my last two doses reduced by 10% (I got 95% of the Taxol).
Exercise, everything I've seen says that the IV ban is for life.
I still get winded going uphill, but biked all over Jekyll Island and Savannah this past weekend with my husband. My energy isn't at pre-chemo levels, but it's getting better. It is so, so nice feeling my body trying to get back to normal.
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Scotland - Thank you so much for sharing your experiences. This helps me a lot because having realistic expectations is very helpful. My current neuropathy is unpleasant but tolerable, so I'm holding a good thought.
Biking Jekyll Island sounds wonderful: thank you for the inspiration for those of us still in chemo!
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ElTigre it is like searching around in the dark after chemo. For months we knew what was next and knew what to expect. Now I feel like toddler trying to walk and falling down while trying my best to move ahead.
MinnesotaLisa I'm glad you and your mo agreed on doing dose #10. The neuropathy does ease up. After I finished taxol I thought I'd never be able to walk up a flight of stairs without feeling like I was slugging thru muck. Or better yet when I had to climb up the steps by crawling on my hands. It will get better so hang tough.
Southern I thought you would have to have rads with a lumpectomy. Think of rads as getting any stray cancer cells that chemo or surgery didn't get. Best advice for lumpectomy is to ice after, rest a lot, and no lifting with that arm. If you want to pm me with any questions. I had both a lumpectomy with sentinel node biopsy and a reexcision lumpectomy to get clean margins. Both were within a month of one another.
Scotland you start rads next week right? Good to hear you are getting your energy back.
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SouthernCharm--that's wonderful news on the NED! Having rads doesn't mean anything nefarious--it's always protocol to do radiation with a lumpectomy. THAT combination is what makes the survival rates comparable to mastectomy. (And if there were any active or formerly active nodes discovered on the sentinel node biopsy during a mastectomy, you'd still also be looking at rads.)
Lisa, congrats on finishing #10!! I did #9 today and was thinking of you, hoping things would go well.
exercise-guru, what date was your reconstruction surgery?? I'm heading into mine sometime in March, so I'm trying to prepare...
cajunqueen, that child is just too adorable. Oh goodness! And may I say how amazing you look for just finishing an entire chemo protocol? (I have taken a sudden turn for the worse with losing most of the remaining eyebrows and also breaking out in little red sores all over my face. Lovely.)
Chemo #9 in the books--3 to go!!
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I can't remember everything by the time I get to write these days. Egad.
Exercise, I had the SNB on both sides as well + ANB on the left. I'm wondering the same thing about my port. I have 2 more surgeries and a lot of blood draws left. But I hate my port, it's extremely visible, and I want it out. I'm not sure what to do. As much as I dread it, I think I will leave it in another year. I can't see sticking my one good vein in my right arm so often. Seems like asking for either lymphedema or a collapsed vein.
I had an echo a few weeks after the AC. I will have another in a couple months, then I think it's every 6 months, then annually. No changes in EF yet.
Final Neulasta just went in. I've been sick all day with my fentanyl patch but I'm hoping it will take the forthcoming pain down a few notches.
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Tiger, what trial are you considering?
Minnesota, congrats! Bloody taxol! We have had a rough go of it with that drug. It sounds like you have gotten what your MO considers to be a sufficient dose now... Whew.
I'm glad I opted for the Neulasta this last time instead of the wait and see as the kids are on their second winter cold. I'm not sure if I gave it to them (i was sick last week) or if this is new, but I need the counts to stay up!
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Carolina Amy, thought about you and MN Lisa today as we all had #9 (9 us and #10 Lisa) Taxol. so sorry to hear about the red bumps! I have gotten them occasionally but usually go away in a day or two. TM me about the boobie pillows if you like. 336.399.6833
MN Lisa, glad the neuropathy has not gotten worse. Mine is about the same. Worse in my toes which throws me off balance. Both my thumbs feel like the nails could fly off but they have not lifted like my big toes have. So glad you made it through #10! and those darn heavy sluggish legs, yuck. Even though I have lost 17 lbs sometimes they feel so fat!
Scotland thanks for the infor about what to expect after we complete chemo. I love to ride my bike but I'm afraid I would fall off with the foot numbness. Better wait. Glad you had a good time.
El Tigre I had my first follow up echo-cardiogram after A/C and have one scheduled next week after Taxol #10, Perjecta and Herceptin. First one came back fine.
Cajun you are just one beautful and cool lady and mother of a beautful son! So happy for you to make it to this huge milestone.
Onward dear ladies!
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Carolina, thanks but don't let the picture fool you. I look like death when I wake up. I am so pale and splotchy with dark, dark circles under my eyes. No eyelashes. A strange amount of fuzz on my head that never fell out. I look like an alien.
Southern, great news on NED!!! Invite him in for coffee... And then see if he wants to move in.
InSF and Lisa, thank you for the mutant love. 👽❤
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cajunqueen, I haven't been told anything at all about cardiac follow-up after AC. Sometimes I think my team (MO, primarily) is just a bit too minimalist compared to others. I appreciate that general perspective, but they do no scans whatsoever during chemo; just a mammogram after finishing. Meanwhile, most other women seem to have some kind of imaging during the process.
I'm so glad I'm not alone in the Taxol effects. I'm doing better than most of us, it seems, but the fatigue and general lethargy are kicking my arse.
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carolina, can you ask foraan echo? Shortness of breath might prompt one where insurance isn't ordinarily willing. Sometimes it's just knowing what words are needed to code it.
I have spent the last 24 hours trying not to vomit. The pins and needles are creeping from my toes into my feet now. I'm itchy from the fentanyl. The pain hasn't even started yet. I'm so grateful this is the end, my body has had enough!
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