Anyone starting chemo August 2016?
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Lyn, that's hysterical! I guess it doesn't pay to be vain does it!
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VLH, I cut my waist-long pony tail off before treatment #1 to about a 2" bob (or blob - my curly hair was bad - actually wanted to lose my hair and wear a wig, it was so bad, lol). The hair started falling out on day 14 and was patchy by day 18 when I went to Great Clips and got it buzzed. Great Clips will do it for free for those undergoing chemo. With my patchy head it was obvious. I would say about 40% fell out the first treatment. Now after 2 full treatments, I am about 60-70% lost. Next week will see if I lose anymore with the third. Eyebrows & lashes intact, but I have lost some arm and leg hair. I all okay with it now and love my wig
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lyn- so funny on the pic! I shaved it at day 20.....I was ready to shave it day 16 but needed to save my hair as my husband had surprised me with a birthday dinner out! I tried to not wash it too much or mess with it a lot lol.
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Thanks for the input, Ladies!
Lyn
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Hello ladies.....I'm horrible about keeping up here. I have plenty of time on my hands, but often just feel blah! Trying to catch up here as behind several pages. I did find out my rash was related to the Taxotere. It was healing by the time I saw MO. She said I could continue putting Aquaphor on it. Some of my following posts are way behind here, but going to try
Wonderwoman-I think it's great that you've been able to work during chemo (especially being around students that could be sick). My MO wouldn't let me work. I do little things around home and go out if I'm feeling good, but being off work and on chemo has had me in a funk.
Cali-congrats on your last chemo! How are your side effects so far? And HAPPY BELATED BIRTHDAY. Hope you had a wonderful day.
Annie-are you feeling better after the bronchitis? How's that baby girl doing?
Elizabeth-Happy belated Canadian Thanksgiving. Sorry your labs were off and you have to wait for your next treatment
Dara-Congrats on your last chemo as well! How are your side effects doing? What did you end up getting your GS for his birthday?
Kechla-you asked about follow ups with docs. As of now I have a follow up 3 weeks after my last chemo (Nov 3). I will then be starting Tamoxifen for 10 years on December 1t. I've been getting the warm flashes myself. I've missed one period so far, with no chance of me being pregnant. Hoping all this has not thrown me into early menopause.
VLH-hair....I started to lose mine on day 11 after the first treatment. I had a friend shave it down to a 2, and never lost it all completely. I posted pics a while back Most of it is gone though. I was also lucky and only lost a few eyelashes/brows.
Sorry if I skipped anyone.....my thoughts are with you all. Hope everyone is feeling as well as can be.
Brandi
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Kelly, sorry about not updating my bio. Don't really know how to do that on here since I jumped in just a few weeks ago. I was diagnosed with Invasive Ductal April. 26. Went to a local doctor in Princeton, NJ first who had the diagnostic ultra sound and biopsy done. Waited two weeks to get the results. In the meantime I had made an appointment with a surgeon at Pennsylvania Hospital in Phila. who ordered a Pet/CT scan. That showed that the tumor was at 1 o'clock and at least 2 cm and that at least 7 lymph nodes were enlarged. Had lumpectomy at surgeon's recommendation on June 13. She felt because I was large busted a lumpectomy would be fine. Tumor ended up being 3 cm and 14 lymph nodes were malignant and had broken through their walls on the final path report. Grade 2. ER PR +, Her2 -. Stage 3c. Saw onco at U of Penn on July 11, and started chemo on July 17. Adriamiacin/cytoxin dense dose every other week for four treatments (dosage had to be lowered from dose 2 to 4 because of very severe side effects). Went on to Taxol. Again very severe side effects and dosage lowered for dose 2. Went in last Tuesday for dose 3 and onco said no more. The risk of permanent damage was not worth the reward. I was already developing neuropathy in my hands and feet. Saw the radiation onco this past Tuesday when my infusion was canceled and went on Friday for the mapping ct scan and will start proton radiation on Nov. 2. 30 treatments with a few boosters afterwards. My breast is covered in tattoos. Because I am large breasted ad floppy at 65 years of age,the radiation onco said radiation will be challenging. I went with proton even though it is longer sessions.
Take care and thanks for your support. Feel so alone and since we just moved in August I don't know anyone here and am alone all the time. The chemo as affected my vision so I can't drive and my NJ friends seem to feel driving an extra 15 minutes across the bridge into PA is too much trouble.
Be well. Marlene
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Thank you, Brandi. I have dark, fairly thick brows and am a klutz with makeup so losing them would really bother me. I hope my brows will be inspired by yours! 😉
Lyn
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Sensitive, you're so good about remembering things! For my grandson's b-day, I wound up just giving him money! But I found a new Monopoly game that uses ATM/Credit cards and the property values fluctuate (I loved that!) I opened the box and got all $1, $5, $10, and $20 bills and put it inside the game. He loved it and got to go shopping. Also, just last Friday he was diagnosed with hypothyroidism. For the last 3 years we've noticed him putting on a little weight so his parents got him checked and his thyroid is basically not working. His mom was dx at age 15 and it runs in his family. He's being tested for a number of other things also but at least they found it super young and can address it early. Some have asked about my other DGS with all the issues. It's getting quite ugly! My DD has had to retain a lawyer, involve (and pay for) private evaluators, set up an independent assessment team, and do royal battle with two different school districts. The problem is, there are few public or private school geared at meeting his needs, without about a 2 hr bus ride! Hard to believe that in the San Diego area there aren't more options! She can't homeschool as she teaches high school and her DH is a captain with the fire dept. Plus, he really needs the socialization.
Marlene, You can update your profile in Settings on your info page. I need to do some research on the two types of radiation before I meet with my MO next week. Did your RO make the proton recommendation?
I've now started taking weekly pics of my head so I can monitor growth. I still have just a few eyebrow hairs and about 1/2 my lashes. I have a few fine arm hairs left, but the rest (and I do mean ALL the rest lol!) is naked baby skin. Pretty weird! Makes for quick showers though :-)
SEs are now minimal. I just kept telling myself, this is it... don't have to go through this again! Feel like a new lease on life!
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Morning 🌻 Feeling kinda crappie this morning. Can't get my stomach to behave.
Kelly...I can't even complain ..here I worry about a lumpectomy & your having a double mastectomy.
Dara ...thank you for the advise. Wow a photography class days after. I can do this. I can't take most of the pain meds they want to give you after so ice and ibuprofen will have to work for me. I will get on that lumpectomy site as soon as I feel better.
Lyn...thx for the sports bra advise ..I usually choke myself putting it on over my head. I have a few of them so I will practice ...lol
Brandi....No worries remember we are here when you need us and sometimes it is too exhausting to lift my head much less go over the posts.
Marlene...I am sorry you feel so alone but we are here as much as we can be for support. As I've said I don't know what I'd do without y'all
I forgot who mentioned the bangs or hair pieces to wear with hats?? Does anyone remember where they found those? I am going to get my wig on as soon as I feel up to it.
Have a great day ladies
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Dara...I am sorry this has become quite a nightmare for your daughter and family. As large as the San Diego area is I can't believe this either. My cousin lives in Poway...his wife taught for a charter school. I wonder how one if those might work? Probably not the resources needed for you grandson...so sad.
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Dara, my husband and I decided to go the Proton route because it is more direct and does not scatter, thus protecting the heart and lungs. It is fairly new for breast cancer. After I pushed for it the RO finally agreed that was the way to go.
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I saw them at a website called Patti's Pearls. That is where I bought my wig. Only wore it once - when I had to have a picture taken to get a Pennsylvania drivers license.
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Cali, TLC.com has them also for a pretty reasonable price.
Marlene, I'm looking into the proton therapy, but I'm not sure it's available at many centers. I see it listed under the Mayo Clinic. Sounds like a good option, especially if the tumor is near a vital organ (gee, like the heart or lungs!)
I just back from a marathon outing! Actually, just had to go to Lenscrafters for a replacement frame for glasses. I'm just amazed at how little energy and how weak I still feel. My DH drove and took me, we found the closest entrance to the mall, and I still had to stop at least 3 times each way to sit or stop and catch my breath. I got back in the car and couldn't even put my elbow on the window ledge, it just fell back down again. Anyone else feel like their heart is going to pound out of their chest with just a little exertion? My MO said my RBC is low so maybe that's it!
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That's anemia, Dara, I had that. Just started OTC iron, helps a lot
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Marlene- wow...what a ride you've been on! That really stinks you've moved and no visitors. I'm trying to be hopeful here..I notice that if I reach out and request to do something my friends respond. But a lot aren't reaching out I think because they don't want to bother me. I really hope the radiation goes better than expected....you deserve a break!
Dara- my red cell count has been low after this last infusion. My NP said it's related to chemo- they were able to check if iron was an issue and it wasn't, so I wasn't able to bring it up with food, etc.
Cali- no worries at all! But maybe Brandi/Sensitive can give me some insight into the recovery process
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Marlene, did you get any pushback from your insurance because of the higher cost of the proton therapy? The "regular" RO could possibly do the shorter "Canadian" protocol while, based on a brief conversation with staff at the proton center, they only do the 6 week protocol. The proton location is also farther away, but I think radiologists downplay potential long term side effects so limiting exposure is very appealing.
Lyn
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Thanks AJB and jiffrig. I know my low RBC is the anemia. My MO said it's been going steadily down since I started chemo. I just didn't realize that heart palpitations and shortness of breath is a symptom. Looked it up though and it is. I'm not allowed to take anything for 3 weeks, not even Biotin or vitamin C so guess I'll wait and see how it is on my next blood test on the 7th.
On the Mayo Clinic website, it does say that most Medicare and other insurances have approved proton therapy. I guess I'll just have to wait till next week to see if it is even an option for my center. I'm going to a local one close by as I just can't handle the 90 minute one way drive 5 days a week.
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My primary insurance is medicare since I am 65 and I was told by the RO that they approved it, I am hoping my secondary insurance will kick in on most of the remainder. Proton is also 6 weeks with 30 treatments at Penn,
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Kelly, I think people are just afraid of me. They don't know what to say and don't realize that just a simple I love you would be great. Also, they are scared of cancer and seeing me is a reminder of what could happen to them.
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Thanks for the feedback on the proton coverage.
Lyn
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Wow ... Again I am so out of the loop ... I am in left field as far as radiation & proton. No one said anything to me about choices or options when I met with the RO last week. I get so confused about it all. I don't want to stick my head in the sand but lately I have so little energy it takes too much effort to think out of the box.
Marlenelin... Know people avoid me ...maybe not intentionally but we do remind them of cancer 😳
Vicki
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Marlenelin and Cali, I feel the same way about people avoiding or just not interacting with me. And with all that's going on this month, I kinda nada melt down. I just posted this this morning on FB, I shared on LL also.
An October Vent,
The month of October has been designated as Breast Cancer Awareness month. Yet do we really want to be aware of breast cancer or those who have or are experiencing it? We wrap cancer up in a pretty pink ribbon; everywhere we look we see pink, pink, pink. We see people sporting beautiful pink scarves around their neck or cute little t-shirts, and sponsor or participate with events that raise awareness and money for breast cancer, but it looks much different when you're looking at it close up, with all it's ugliness and grotesque features, the scars, the IVs, the pain, the fear, the isolation.
We all live such busy lives, engaged with family, friends, work, hobbies, daily chores and events. But no one realizes how that can come to a screeching halt when cancer rears its ugly head. It doesn't just slowly permeate your body, it rips into you and temporarily strips you of everything that makes you who you are. Your body betrays you, every hair on your body abandons you, and life as you know it changes forever. Somehow, a pink ribbon just can't cover it up.
Thank God breast cancer is one cancer with a good early detection and remission rate, but make no mistake, people that we dearly love still die from it. And those who go through treatment will forever cringe at the slightest lump, pain, or yearly test or checkup.
The fundraising, the awareness, the research is so needed and so valued by all. Cancer treatment has made huge strides in the past years, but it is still devastating. People often say, they just don't know what to say when someone has cancer, or they don't want to disturb someone going through treatment. But the isolation that envelops you when that diagnosis comes in is sometimes harder than the treatment itself. So, fine, tie that pink ribbon, but take that ribbon off sometimes, and connect with someone who sees the real ugly truth about breast cancer. Send a text, make a call, smile at someone wearing a scarf or beanie on his/her head. You're not disturbing us, you're making us feel we are still here and we are important. We may look different, but we're still the same person inside.
And I for one, am wearing every color except pink in October!
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Very nicely put, Dara! You must be a writer to be so eloquant and heartfelt
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Dara -- would you mind if I copied you post to my FB?
I passed my blood test today. So I start Taxol in the morning
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Elizabeth, be my guest!
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Elizabeth re my post, a good friend this morning was talking to me about my FB post, and summarized my feelings by saying, "It's like we've turned breast cancer into a Hallmark card." I thought that was pretty apt.
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Hello DaraB: I've "lurked" many a day on this discussion board. Technically, I started chemo in July but went through all of August, September and the first 2 weeks of October. I'm extremely fortunate to have only had to endure the side effects of weekly taxol and herceptin as opposed to the torture that many of you have had at the hands of A, C and other chemotherapy treatments.
At any rate, your "October Vent" expresses so many of the feelings that I have had so perfectly. I recently e-mailed my neighbor that I was welcoming the approximately 3-week break I have until radiation starts without showing up on Wednesdays for my weekly reminder that I have breast cancer. However, I mentioned that I guessed that I was going to be reminded of it daily thanks to the media blitz associated with Breast Cancer Awareness month. I heartily agree that if the media spurs more women to get breast cancer screenings, that is a good thing, and if the fund raising events held in October help further research that leads to better-tolerated treatments and more positive prognoses, all the better as well. But as a fellow person living with cancer, it is easy to get a little weary of the pink ribbons and Facebook posts from well-meaning people who haven't faced cancer in the mirror themselves.
Cancer is isolating, and I do believe it's because people don't know what to say or do around the person they once knew as "healthy". That is why these discussion boards have been a boon to me during all of this because it allows me to connect with people who really understand.
Thank you for your eloquence. I'm with all of you in spirit.
Wendy
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Welcome, Wendy. Sounds like we'll be doing radiation about the same time. I see my RO next week for the initial planning session. I was hesitant to post my words, but I've really been feeling lately that bc has been "whitewashed." There is so much success with tx that I feel that many almost think "oh, it's only breast cancer. It's like because it primarily affects women, our society needs to make it pretty. Like you, I absolutely value and appreciate all that BC Awareness Month brings to the table. Yes, awareness, self examination, and knowledge has safe my life, but I think I've fed into this whole misperception by always trying to be upbeat, positive; when people ask me how I'm doing, I rarely say terrible!
Those who have responded on FB have been very supportive, and even thanked me for helping them see a different perspective.
Hope you can enjoy your 3 weeks hiatus. How many rads will you be doing? Pop back in here often. Several of us plan to stick around even after our chemo has ended.
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Well Dara- you brought tears to my eyes with that well written post. I too am tempted to post it on a caring bridge website I have, but again God forbid I offend someone........
Wendy- thanks for your comments too...
Dara, Cali, etc....please stick around
We want to know how the rads go, and like Cali- I had no idea there were different kinds- so soaking it all up. I still have a few months of chemo and then I'll have the big BMX (I think I finally got that down). ok...I'm actually posting it Dara....I hope that's ok. I read it again and started tearing up again LOL!
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VHL-one other thing on hair. The week before it fell out, I got little sores and it was real itchy. I read a suggestion of baby shampoo somewhere. I've been using baby wash on myself. More mild on my itchy skin.
Dara-I don't have a good memory. I take notes. Love the idea of Monopoly and putting money in it. Sorry to hear your daughter had to retain a lawyer. I hope it gets sorted out soon.
Welcome Wendy!
Hello to everyone else as well. Hope your week is going well.
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