Starting Chemotherapy March 2018
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Hi Sidalee, I agree with BecKy: sometimes it feels like a crapshoot. That said, I am about halfway through radiation and no problems so far....Good luck and let us know what you decide.
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Hi ladies! It’s been awhile since I’ve checked in. I hope everyone is doing well. Sidalee I agree with the others that the unknown is the worst and sometimes we feel like we’re playing roulette here...but for what it’s worth I too found rads to be the “easiest” part of all this. It was just a pain to have to go every day. But without it my reoccurrence chance would be much higher and I was more scared of reoccurrence than I was of the treatment. I hope you find comfort in whatever you decide.
As for me I’ve been on Tamoxifen now for almost 2 months and tolerating it well so far. After one period from hell after I first started I haven’t had one since, but that’s pretty much the extent of it and I feel thankful for that.
Really the only lingering chemo side effect I still notice is my eyes get really dry and irritated. I have to use eye drops regularly now and never had to use them pre-chemo. But I guess I can’t complain.
Now onto my favorite topic...hair! How is everyone doing with growth? My plan is to grow it out until the end of Dec. and then pay a visit to my hairdresser to see what she can do with it. I will return to work after winter break debuting my new shorter hairdo 😊
Here’s my growth so far...on the left is 7 weeks PFC and the right was 2 days ago at almost 17 weeks PFC. I dyed it dark brown because it was coming in almost totally grey. 😳
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Steph--thanks so much for posting the pics. I'm still <kind of> obsessing about my hair. I'm 7.5 weeks PFC, and what was light/white peach fuzz seems to be turning darker? Does that sound familiar to anyone? I know it's very individual and everyone keeps telling me to BE PATIENT but do you remember about how many weeks PFC you felt like your scalp was covered? Your 17-week pic looks awesome, and I'm not looking for anything like that before I ditch the ball caps, but I definitely want a little more than I have now.
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Ingerp—-this was taken about 11 weeks PFC (so a month after that first pic above and when I was starting to breath a sigh of relief that it was starting to come in evenly. Hang in there!!! I know it’s like watching paint dry...
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Ingerp - are you taking Biotin? I've been taking it and though it took a while for my hair to reappear, once it started poking through its been filling in pretty nicely. Also, eat lots of protein. I've been throwing gelatin into my morning coffee or smoothie.
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Steph that gives me hope. Hubs and I are going out of town for a long weekend at the end of October (12 weeks PFC) and I am really hoping I’ll be out of the head covering phase by then. I’ve thought of the paint drying analogy myself. I think going forward I’ll have to go with “like watching hair grow” in similar situations.
hapa I have been taking Biotin. My MO said even though it isn’t very long yet, at least it’s coming in all over. I’ve cut back on my protein since finishing chemo but will bump it up again. And I did do some research on gelatin, which I know we were all told growing up would help hair and nails but apparently that’s a myth?
I’m usually a patient person but it’s the not knowing how much longer I have to wait that’s making me a little antsy.
You all are wonderful to cheer me on!!
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Ingerp I had the peach fuzz start during abraxane, a few weeks later a shadow appeared over my entire head (I would say it was there a couple weeks before the hair really came through),and once the hair came in it grew really fast.
I also took biotin,Have more than an inch and hair is starting to lay flat now at almost 10 wk Pfc. I went without wig about a month ago. Will post some pics
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Last week of chemo
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there is fix on prior photo though it’s hard to see. 2 weeks
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Sorry meant fuzz. Next is not quite 5 weeks Pfc, went out in public though I felt a little uncomfortable. Was grey on temple area
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This photo is now. I dyed the temple area and added a little dark blonde to top too although it was more of a dark ash color not grey on top anymore.
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PS I cheated and used filter for last pic, couldn’t resist, makes skin look smoother 😜 I definitely am looking more and more like myself though — and Eyelashes and brows are totally back now.
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mLghtn—I’ll absolutely go out with coverage like you had at five weeks. Your hair looks great! (So does your pup!) Thanks so much for the pics—they really do help.
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Thanks! I'm glad
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Ingerp - I don't think there's anything special about gelatin, it's just an easy cheap low calorie source of protein, and hair and nails are made of protein. But my body is also needing extra protein to heal from surgery and chemo (and rads, if I decide to go through with it) so I feel like there's a lot of competition for protein in my body right now and so I need to be eating a lot to cover all my needs. I've read that your body can only process ~25g of protein at a time so I try to eat smaller amounts spread over the day, hence the packets of gelatin. I know it's weird. But I'm really eager to get my hair back too so I'm doing whatever I can. I think I've got 3-6 weeks left of wearing these stupid bandanas, which are just torture to wear in Phoenix. Good luck with growing out your hair!
Sid - my implants are pre-pec. As for radiation, when I talked to my RO and we talked about stats and how much rads would help with recurrence vs. the risks of other things...well she pulled up this one study that showed benefit for rads and when I looked closer at it I saw that the survival rates for both the rads and no rads groups were horrible. I commented on it and that's when she told me how old the study was...it was like 30 years old! So I've been looking around since then for more recent studies and I literally cannot find a single study on the impact of post mastectomy radiation on Her2+ women who got herceptin. Anyway, I don't think Mayo has done or is doing any studies on radiation therapy for breast cancer patients so I'm getting a second opinion at MD Anderson on Monday. After that I'll decide if I want to take the risk of lymphedema, implant failure, capsular contracture, secondary cancer, etc., etc. or if I just want to take my chances with the cancer. I'm leaning toward doing chest wall rads only since that seems to have more benefit than rads to the lymph nodes and axilla without increasing my risk of lymphedema (which is what really scares me), but I'll see what MD Anderson says first. Hopefully they can give me something newer than data from 1987 to go on. I understand your worries about rads, but I think the 50% implant failure rate you were quoted is really a complication rate, where a complication could just be some minor fibrosis or contracture that nobody will really notice. I think the 40% lymphedema number might be similarly inflated (including women who had episodes of lymphedema, not permanent bloating) but I certainly cannot get a feel for that from my current RO, who seemed completely unprepared to talk about lymphedema at all with me. She did mention mepitel to try to reduce the chances of skin inflammation/infection, which should also reduce the chances of a lymphedema flare-up, but I don't think it will eliminate radiation damage to my lymphatic system, which is the real problem.
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Ah that makes sense, hapa. When I was in chemo I had red meat almost every night, had an egg every morning, and drank a protein shake every day and did space that out through the day. I haven’t gotten on a scale in over a year but I know I gained weight with all of that, so part of cutting back on my protein has been calorie-related. (I didn’t realize that those protein shakes have 400 calories—yikes!) Not sure I’ll make it but I’m crossing my fingers that I can ditch the headwear in about a month when hubs and I go on a short end-of-treatment trip. If not then, I’m optimistic I’ll be good to go by Thanksgiving. Hang in there!
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Here is my 17 week PFC hair pic! ❤️
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Love the hair pics, you girls look great! I am still waffling about what to do with my 17 different hair lengths, lol. My stylist said she can try to blend it all in, but I'm nervous about not having the (so tiny now) ponytail option. I need to just suck it up and let her do something with it.
hapa--very interested to hear about your second opinion at MD Anderson. At this point I have almost convinced myself to just suck it up and get it over with. It helps to hear so many of these ladies had a fairly easy experience with rads. Relying on a hope and a prayer is not my favorite way to make medical decisions, but I don't think things will get any clearer before I'm halfway into treatment. I'm supposed to start on Monday so hopefully I don't have a panic attack or another meltdown at that point.
I'm thinking about booking us a fun hotel nearby my mother-in-law for Thanksgiving instead of staying at her house with all the relatives this year. Anybody else planning something fun for the Holidays?
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Lookin' good Bec-Ky!!
And yes! Two of my kids now live in the San Francisco area so I’m going out there for Thanksgiving. I’ll be about 16 weeks PFC by then. I’d better have hair!
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Wow Becky! Beautiful! Did you have color put in? I’m 14 weeks and afraid to do color yet, as I’m still shedding. Yours is sooo thick!!!
Good luck sidalee...rads was by far the easiest part for me. The people were so nice, my mold was comfortable, got to listen to soothing music...not too shabby 😊.
Ingerp-I love San Francisco!!!
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Hi All,
Nice hair pics. I'm 16 weeks post chemo. My hair was growing in uneven so I had it cut and it looks much better even though it's really short. It's more gray, straight instead of curly, and still thin, as in my scalp still shows in spots. I'm trying to be patient but it's hard. It does feel good not to have to wear a hat.
My heart showed some damage from the Herceptin and I felt horrible.Feeling better now, but missed a dose and will get a retest this week. Results will determine next steps.
Wishing you all well.
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Sorry to hear about the heart issue, Downdoggie. But congrats on being able to go hatless!!
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Rwns-no I didn't have any color put in... And the funny thing is... Idk why every time I take a picture - it looks brown... Cuz it's soooo gray. Like this is soooo deceiving. I wish it looked that brown for real... but it doesn't.
It is slowing changing color tho.... And there is brown in it.... So I don't want to color it just so I can see what the true final color will end up being...
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Downdoggie-how did they discover the heart damage... Do you have symptoms?
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I’ll let Downdoggie speak for herself but I’m getting an echocardiogram every three months while on Herceptin.
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Just posted this on my FB page - we're all in the thick of it but want to remind friends and family. Love to all!
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Well, MD Anderson is also recommending what they call "comprehensive" radiation. This time though I felt like they laid out the case such that the benefits far outweigh the risks. They also said they don't recommend proton beam therapy as there's no real benefit with my course of treatment and there's a higher risk of skin toxicity.
Sid - the MO at Anderson said that there a gray area for women who get neoadjuvant chemo and have <1cm of cancer left and/or 1 positive lymph node. And if you're under 45, Her2+, or have less than 2mm margins after surgery then you are also more indicated for radiation. He said each of those risk factors were equivalent to 1 to 1.5 positive lymph nodes. I think there were some other risk factors but I didn't write them down.
Anyway, on the upside, I now feel a lot better about doing radiation. On the downside, I really would like to have this guy as my RO, but I'd have to relocate to Houston for six weeks to make that happen, which means more time off work, renting an apartment, and also since I'm still on Herceptin, getting with an MO in Houston as well so I can get my infusions during radiation. It almost seems ridiculous to even consider getting this done in another city, but I might do it anyway.
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hapa ~ thank you so much for sharing all of that information from your appointment, that explanation about risk makes a lot of sense and I wish my RO had explained it better. I feel a whole lot better about moving forward knowing that my risk is similar to that of someone with 3+ positive nodes. That's a game changer.
I had my first radiation treatment yesterday and it was fairly quick and easy. They said I wouldn't feel anything, but I felt a little tingly crackle in my armpit. I have my Mepitel film on and I'm hoping for the best.
Good luck on your decision of whether to go to Houston for treatment. I know that peace of mind and doctors that you connect with can go a long way toward successful treatment with minimal side effects. Do what you feel most comfortable with if you can make it work.
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It's so great to feel comfortable with your treatment plan.... What a relief!!!! ❤️
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Ingerp, it is interesting that you are having an echo to monitor your heart while on Herceptin. I get a MUGA scan (multigated acquisition) every 3 months. I see on this website, https://www.cancer.net/navigating-cancer-care/diag..., that both are commonly used.
Bec-Ky, the MUGA showed a decrease in my hearts function in terms of the squeeze of blood flow. I felt horrible, beyond exhausted, but my ONC says I would not feel symptoms. The latest test, after skipping a dose of the meds that cause it, shows an improvement, and I feel 100 x's better. My oncologist wants me to start the Herceptin again. I want to know more about potential damage. My Oncologist is knowledgeable, but also rather closed minded and resistant to my questions, which really bugs me. I'm going to do my own research and then go from there. For now, I have an infusion scheduled. I sure don't like having to choose between heart damage and cancer recurrence!
Wildcolonia, thanks for posting that pink ribbon image. I will put one up on my social media as well.
Hapa, you have a lot on your mind. I hope you find peace with your decisions sooner than later.
Wishing you all wellness!
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