Starting Chemo in November 2017
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Yay, Kat! Hope you recover quickly. Sending healing thoughts your way
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You must be relieved that the surgery is done. Time for rest and recovery. I know you've struggled with this Kat. We are behind you with prayers and well wishes.
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I have 2 question for those who have had their Mastectomy and Chemo and ready for Radiation:
1) WHAT % did your RO give you that if you had Radiation, it would increase your odds of NO reoccurrence.
2) Did anyone turn down Radiation? (if so, for what reasons)
I have my last Chemo on March 13th, and I'm sure my RO will be calling soon.
Thanks - rj0 -
Kat - so glad your surgery went well. Hugs.
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rljes - I just had my consult with a radiation oncologist yesterday.
The fact that I even needed to have such a consult came as a shock to me, since the original plan had been to have surgery only: "one and done." It was only last week while I was at my MO's office having lab work done for the chemo that I never thought I'd have to have that she asked if I'd gotten a referral to a radiation oncologist. She said I might not need to do rads, but that because one of my lymph nodes was involved I should at least have a conversation about it. Would have *much* preferred to have been told this far earlier in the process so that I was better prepared for it emotionally. I wnet home, had a melt down and then picked myself up and scheduled the appointment for the earliest possible date.
Anyway, to answer your question: 1) I was told that radiation would reduce my risk of recurrence by 2-3%. My consult was with the head of the department. He initially said that he didn't have a strong recommendation one way or the other. But by the end of our meeting he said that he was leaning toward suggesting that I skip it - though of course the decision was mine. He said it would be different if I hadn't already done surgery and chemo, but I have. Another factor for his opinion was that my tumor sizes were small. 2) I will be speaking to my MO and my surgeon before making a final decision, but I'm currently thinking that I will refuse radiation. I can't see putting myself through that process and accepting the inevitable side effects for such a small projected benefit. Will be thinking about it for a bit. I was told that if I am unlucky enough to have the cancer return, I can do radiation at that point.
I have a counseling appointment tomorrow and this will no doubt be our primary topic of discussion.
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Thanks Magari - I was glad you answered, especially since we are taking the same treatment. I had 4 consults with my RO BEFORE my chemo, the first he was hesitant because of my skin issues, but by the last appointment he was all for me having radiation. But I don't remember him giving me a %.
I've started to have "Baby Bird Fuzz" on the top of my head. (Last Chemo will be Tuesday) Little tiny wisps of hair about 1/4" in a Mohawk style. I'm tempted to shave it.
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rljes - Excited to hear about the new hair growth you are having before your final chemo! I myself have been hoping for, but not seeing any evidence of same. I had what seemed like a bit of leg stubble several weeks ago, but have been back to silky smooth since. (One of the only good things about chemo, IMO.)
My upper lashes have larger gaps than before, and at this point I've got no lower lashes to speak of. Brows have thinned but are hanging on well enough that I can use brow mascara rather than having to actually draw them on. Which is helpful, since I am lousy at it....
Now that your chemo is complete, I would circle back with your RO and ask him to update his recommendation and give you some numbers. I realize it's all educated guesstimates, but you need something upon which to base your decision.
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Hello Nov '17 folks, I started chemo one year ahead of you--in November '16. Today is the one year anniversary of my last chemo treatment. It feels longer than 1 year. At this point last year I had 2 (two!) straggly little hairs in the middle of my head. Today my hair is back. My hands and feet are almost recovered. My challenge is chemo brain which I'm working on. Recovery took/takes longer than I expected. If I had one thing to do differently during my year of treatment, I would have had someone come in to help with cleaning. I did not have the energy; a clean(er) house would have lifted my spirits, I think. I'm in the Tapimmune clinical trial and have one more injection to go & this makes me hopeful. The Nov '16 cohort has largely dispersed; almost no one posts, now. I hope you all stick together and continue to support each other. The best of health and happiness to all of you.
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aterry- thanks for jumping in our group and giving us an update/ If you think of anything else that you would have done differently, please let us know! Thanks again.
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aterry - CONGRATS on your 1-year anniversary of completing chemo! And thank you so much for checking in to tell us how you are doing. With one more round to go myself, it is encouraging to hear from someone who's come out the other side. And helpful to hear about your experience.
I very much look forward to joining you. My best wishes for your continued health and happiness.
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Hi aterry I join rljes and magari in congratulating you and toasting to your continued health and happiness. Like Magari said good to hear from someone who's come out on the other side. Thanks for posting.
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aterry, thanks for your post. Your hair comment helps! I've told someone on the BRCA FB group and a friend's SIL starting Chemotherapy to join a thread because it is so beneficial,
I have lymphedema symptoms. It's in the breast area. My arm isn't swollen. And I'm flying next week. Great timing. I wore a cami/shelf bra yesterday because regular bras are driving me mad. Big mistake. No compression made it worse. My fingernails are horrible. Guess they are beginning to grow out and into the chemo ridges.
I hate to make this my complaint corner. Otherwise I am feeling fine. My energy level is close to normal. I can see my translucent hair in the mirror if the light is right.
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i concer with getting help with cleaning. I started with a monthly cleaning that just perks me up .. dont assume you can not afford it, Even this past few days with east coast snow, found a teen ager who wanted to earn extra money, she was thrilled to earn some money cleaning my car.
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orangedaisy I'm glad to hear you have signs of hair coming in as I know you were worried about it. I hope I soon follow. I'm so glad your energy is back too. I'm surprised you have lymphedema as I noticed you only had 3 nodes removed, but then again I don't know a lot about it. Can you get physical therapy for it? I've heard certain self message, manual drainage techniques help.
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*Meant self massage sorry.
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I was surprised to have symptoms of it too. At least my arm is not swelling. Just heat and pressure under my arm and above my implant, but from what I read, that is lymphedema. I believe there is PT for it, and there are massage therapists licensed in lymphatic massage or you can self-massage. It is much less noticeable today. I did Pilates yesterday and did not wear a snug bra the rest of the day, so maybe I brought in on myself. I need to research if some of my Pilates moves could be triggering it. If it continues, I will call my oncologist and ask what to do next.
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siorry i can't rember the name of the group there is a sort of support group that showx how to do the lympho massage
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Orangedaisy Are you just resuming workouts? It could be a result of that as well. I need to get back to working out. I really miss it.
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Orangedaisy...Sounds like you are doing very well, except for the lymphedema. I've never had lymphedema, even though I did have a bit of lymph node removal. Just lucky, I guess. I hope you get it under control.
Hope
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Good morning, everyone! I haven't posted in a while. Life happened and things have been a little crazy with my job, but I wanted to check in and see how everyone is doing. I had my final round of neoadjuvant TCHP (6 total) on Feb 15. Those last 2 rounds were TOUGH. I had stomach issues beginning with the first round, so I ended up on Prilosec, which helped quite a bit. I had to add Carafate the last 2 rounds because I had throat ulcers. Those symptoms have gone away, thank God. I still have a lot of annoying muscle twitches, and my eyes have been watering nonstop for two weeks, but I'll take that over nausea and nosebleeds any day! My blood counts stayed pretty close to normal the whole time, which was awesome. I had to have a magnesium infusion before my last round of chemo, but that was it. My fuzzy head is looking really crazy, and it makes me giggle when I look in the mirror. My fingernails are almost all loose (disconnected from nail bed halfway down or almost to the cuticle), but not actually falling off. I'm hoping they hold on.
I'm scheduled for surgery (BMX with reconstruction) on 3/20 and then on to another 8 months of Herceptin/Perjeta infusions. I had a mammo and ultrasound right before my last round of chemo, and there was no sign of my tumors anywhere and lymph nodes looked clear. Tumors appear to be totally gone. Yay! So, I'm praying I've had a pathological complete response to the chemo and will show no evidence of disease at surgery (so no rads).
On a personal life struggle note, about the time I found out I had cancer, my company announced they were being acquired by another company. My team has been waiting 4 months to see if we will have jobs going forward. I got the call yesterday, and I will not have a role in the new company. So I will end up with a 6-month severance. It's all so scary to be dealing with this during treatment, but I've already started applying to other jobs. Just gotta stay positive.
We also found out two months ago that my mom has a new breast cancer (she is an 11-year survivor) and is now undergoing treatment. Luckily, hers was caught super early and was non-invasive. Her prognosis is excellent.
Whew. Sorry for the super long brain dump. I hope you all have a wonderful weekend and are able to do something that fulfills your soul
-Leanne
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Hi Gals just got back from church youu are all in my prayers. Hope everyone have a good week with mimimum SEs to contend with.
Yesterday was Taxol treatment#4 so far so good seem to be tolerating well just got a cold but that didn't prevent trestment as the bloodwork was fine.
My eyelashes and brows thinned out not sure if its growing back hard to tell, I just pencil them in put my wig on and keep it moving.
Stay strong, rest, eat as healthy possible and lets kick this cancer to the curb.
Dark13
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Kivans - have you any signs of hair growing back yet? Mine is doing nothing but growing these feathery fine thin white hairs and that are here and there on my head. 8 weeks past last chemo treatment. My real hair is just sitting there doing nothing. My leg hairs are growing again - ugh!
Hi Nonahope! Hope you’re feeling okay and enjoying your weekend.
Timeslikethese - I’m so sorry your job faded out - it’s so common when a company gets changed under a new management that the original employees get pushed away. I worked for a company several years ago that did the same thing. Doesn’t seem right they can do that. Also sorry that your mother got a new cancer, but great that it was caught early, and wish the best for her as well as you. It must have been a great relief to get a clear report after your first chemo round. Maybe you won’t need 8 months of treatment the second time around. Best of luck.
Dark13 - You are lucky you’re tolerating your Taxol really well. Keep fighting it and best of luck. My lashes that I lost aren’t back yet either, but I didn’t lose all of them, just the bottom ones somewhat. I’m having fun with wigs - until the hot humid weather returns - then I might complain. I’m hoping I have pixie hair by summer, but I’m still bald as can be.
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Blair, I’m sorry that your hair isn’t growing. Even though I’m sure mine is, it’s gone from about 1/16 inch to an 1/8 inch, and at my hairline at my face, the hair that never fell out is just sitting there. I am so tired of lashes and brows falling. 8+ weeks after chemo is ridiculous. My bottom lashes are falling this week. I can see new growth on the brows. Maybe the new hair is pushing out the old.
Timeslikethese, so glad your scans looked clear. I had my BMX and reconstruction on Oct 11. I still don’t feel completely healed. Stuff pulls and aches at times. PS said it can take up to 18 months for everything to settle down.
Klvans, I never stopped Pilates. but stopped upper body work for 6 weeks after BMX and the 4 weeks I had a PICC. My trainer has kept the spring weight light for the last 8 weeks, but I’m feeling good, so I’m working harder. That could be the culprit.
Top pic is today. Bottom pic is Feb 27. I still look bald, but I can see the change.
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Orangedaisy - yes, I see the difference in you hair growth, especially bottom back area and at the top. That's exciting. I'm trying to be patient, but thought for sure it would start to grow back sooner than this. I don't see bird fuzz at least on your head. I keep wondering if my bird head fuzz is going to be my only hair! Oh what a sight that would be.
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Hi Blair and Orangedaisy. Orangedaisy, I'm so impressed that you kept up with your Pilates. I bet it has improved your recovery. I really enjoy being active and working out. I'm going to join a new gym soon. And yes what a difference in your hair! I know it probably doesn't seem like it but you are on your way girl! You can tell that you will eventually have a full head of hair. I even see some nice eyelashes.
I think eyelashes and eyebrows fall out because they become synchronized during chemo. Normally they would be on a staggered growth cycle so they wouldn't fall out at the same time. Interestingly when we shave our legs we synchronize our leg hair. It all grows at the same time and rate and that's why we think shaving makes our hair get thicker. It doesn't really, it just synchronizes. I recently got some Latisse (lumigan) to enhance my lash and brow growth. I used it before and it worked well on both my lashes and brows. I'm applying it carefully so as not to get it on all my lashes/brows as I want to stagger my growth if I can. My brows and lashes are there, but thin. We shall see what happens. I'm keeping my expectations low. I know they could all fall out tomorrow.
I cold capped but it didn't work very well at all. I lost 95% of my hair and am mostly bald. I think my body absorbed those chemo drugs like a sponge. I see what I think is growth in a few places but on most of my noggin there is nada. Where I am most bald and where I would really like it to see it come in I have nothing. I'm ok with it most of the time as I just put on a hat and do what I need to do but when I get myself ready for the day I look in the mirror and cry. Part of it is vanity and the other part is grief over not looking like myself. I need to remember to count my blessings. I've also been working on my skin. Chemo drugs took a toll on it but it's improving now. My eyes were so red for awhile but that's also gotten better.
Blair I've heard that when hair comes in at first it's very soft and fuzzy. It sounds like that's what happening for you. I'm crossing my fingers that both of us see an improvement soon. Here's to a good recovery for all of us.
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rljes- I am so glad to see your post about rads. I have been trying to decide whether or not to continue with it. I am supposed to go for my first appt in April, but it’s never going to work with my work schedule right now and I heard that it really doesn’t decrease my chances that much, since I’ve already had no node involvement, clean margines on the lumpectomy, and 5 chemo treatments. I’ve been going back and forth on it I should do it or not, is it really necessary. I’m leaning more towards the no. I’m really glad I am born the only one thinking along these lines.
Tina.
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Blair, I haven’t had any bird fuzz either. It’s been prickly like a guys scruffy beard. As it’s gotten a little longer, it’s softened. Maybe the older we are, the slower it returns. You had such strong side effects, it may have been rougher on your hair than most. I’m doing lots of things to encourage growth. 5,000 mcg oral Biotin twice a day, one scoop of collagen in my coffee each AM, a daily shampoo mixture of Nioxin, a Biotin shampoo, and Alra rosemary and aloe shampoo, and a daily massage with a squirt of my homemade scalp oil of 1 tbsp each olive oil, castor oil and Jojoba oil with 5 drops each peppermint, lavender, bergamot, ylang ylang, rosemary and clary sage essential oils. I really want my hair back. I can’t wear a wig. I think I’m allergic to the material in the wig caps. The warmer it gets, the more hats bother me too.
My nails are a mess and getting worse, and the tips of my fingers are splitting again. Not quite as bad as during treatment, but still uncomfortable. The skin on my face looks better than it did pre chemo. It got rid of my sun spots and acne.
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my hair is coming in, my onc changed my med and this chemo doesnt seem to cause hair loss. It is very soft and now about 2 inches, very fine and thin. My nails were a disaster but found an manicurist that hans sanved them
So strange that we all have wildly dif results.. my blood workups have been stable thek last 2 visits but having pet scan end of month, cross fingers!
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That’s interesting Orangedaisy. You have worked hard with all your hair treatments, but it sounds like it’s working for you. I bet as your hair grows in, it will be well nourished and in tip top shape. Maybe your nails are being stubborn like my hair.
My nails never turned color during treatment, however they weren’t growing during treatment either. Now they have taken off. What’s really perplexing is that I had this one nail on my left hand that always split and would never grow out. It was flimsy and frustrating to deal with. Now it’s practically my longest nail. Now I know it takes months for a nail to grow out to the tips of your finger, so I can’t understand why this one nail is suddenly stronger. Not sure if chemo had anything to do with it - maybe my surgery did. In fact, all my nails are growing out better. I was having to wear fake press ons to have them look nice and gave up polishing them. My skin is super dry, but our dry weather hasn’t helped. Moisturizers and lotions don’t seem to give me much help. I’ll be glad when the humidity returns enough to plump up my skin.
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I think Orangedaisy has worked hard on her hair too. Agree she will have nice hair when it comes in. I wish my skin had improved with chemo. It got very red and dry. I'm glad some people have positive side effects on their skin/nails.
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