Starting chemo August 2017 - would love some moral support!
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just attended a "look good, feel better" session at my hospital and really enjoyed it. Small group with 5 women including me, aged approx late 40s to late 70s, plus 1 family member. The photo above was our goody bag - you tell them whether your complexion is light, medium or dark when you register, although there were a couple extra off each type in case someone chose the wrong shade. Normally there are 2 licensed, volunteer cosmetologists for each session, but 1 had to cancel for today. The gal we had was very personable, but as this was only her 3rd time, I think it was probably the first time she's led one. It went well, but I would guess more experienced presenters might have more practical tips on skin care etc than are in the little booklet that comes with the bag. Had a standing makeup mirror and misc disposable applicators for each participant...l wiped off the makeup we arrived in and applied what we were given in the bag. I was very surprised at the quality of the products - the makeup brushes with the snap-closed travel caps were a hit with everyone. Products are donated, so there is variety between brands and exact product in each bag, but everyone received 1 of each item to be applied. The highlight for me was the discussion about doing eye brows, as well as some of the products on the market to make it easier (stencils, temp tattooes, etc). She also talked about wig care and the women in the class shared great tips on where to get wigs or hats with hair locally, and diff turban or scarf tying ideas.
Class was scheduled for 2 hours, but with our small group we were done in about 80 minutes. I'm happy that I went!
Has anyone gone to a Breast Friends or Bosom Buddies support group meeting? I'd be curious to hear what it is like. I'm more of an introvert, so I prefer groups that are built around an activity so there's something to do as I meet new people....
Walkingintheclouds - glad to hear your first session went well and you are able to rest!
Willow -
hello all
I'll be joining you all as I start chemo August 21. I'm nervous, scared and excited all at the same time. My regimen will be AC followed by caboplatin and taxol.
My oncologist hasn't mentioned prescriptions for any of the things you ladies are talking about, nor recommended mouth wash, etc. Maybe this will come on my first day?
Also I get my port placed the same day I start chemo, so I'll probably be feeling sore all day. We have to be in the hospital all day!
I go for my echo friday.
Good luck to everyone starting chemo soon *hugs*
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Willow,
your goody bag looks great! a nice mix of products. I might do this down the line.
Has anyone else looked into getting a wig? Any recs?
The nurse at my hospital suggested I start looking into places.
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Makeup - your MO should have someone goes over the details before your infusion, I'm having AC then taxol.
Here is the shopping list so you can get ready for your first infusion. Any questions please ask
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thanks for the info Paulette!! Ill be doing some shopping
Ill ask the nurse before they start on Monday
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Makeup - make sure to do baking soda, salt and water mouth wash after meals, this helps out a lots.
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Paulette, thanks! That list had so many useful tips.
Is the neulasta shot always required after chemo? or is that for certain types only?
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makeup - the neulasta shot would boosts your white blood cell and I get the shot. If you're going to get this shot make sure to take Claritin a day before.
Why chemo makes us sleepless? Now even with .5 mg Ativan I can't sleep !!! 😢😢
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but the neulasta shot isnt a requirement? like standard protocol?
and gosh that sucks, sorry you can't sleep! I guess they will prescribe sleep aids for that too huh lol
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Willow: I love my LGFB goodie bag! It looks like we got the same stuff. I use the bare minimum when it comes to makeup (powder, eyeliner, blush, lipstick) just to save on time, but after the session I've noticed that my face feels different after I started chemo. I love the moisturizer we got and use it before bed and it really hydrates my skin. My mom noticed a difference after just 2 days of use!
I wish they talked about scalp care. I read somewhere that we should use sunscreen in the scalp but is there a preferred brand, specific spf, etc...
Regarding SEs, it sounds like each MO has a different way of tackling them. I was given Zofran to use as a counter to the steroid so I only take it in the days I'm on the steroids. Since I was also prescribed compazine, I use that on the non-steroid days. My infusion nurse told me to keep it in my purse so that when I start to feel even a tiny bit nauseous to take one. I followed that advice and have not had any major nausea thus far. I was told to see how I react at first before driving, and it didn't make me sleepy at all.
Also for nausea, when I don't want to take drugs I've been sucking on Tummydrops. My sister gave it to me in a chemo care package via Amazon. If you look at the reviews, this is used by many chemo patients, and pregnant women battling morning sickness. It is a ginger lozenge that's pretty strong, but it helps me with nausea, gassy-ness, and bloating... It also comes in a minty flavor which I just ordered.
Paulettek: when I can't sleep I take Tylenol PM. That has helped me sleep at least 4 straight hours, especially on the nights I have my bone pain.
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MakeupLover, welcome to the community. About wigs. The american cancer society (ACS) TLC program should have locations near you, hopefully. When you have your meeting with the nurse, she should give you a bunch of stuff, some of which will be about that. One thing though, most wigs will have to be ordered after the fitting; two weeks was mentioned. I kinda wished I had gone earlier, but you can look at the selection of wigs online. Just google ACS TLC. One free wig per patient. They do interview you at ACS before the appointment set up; lots of questions.
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Willow- I wasn't going to go to the free makeup session at my cancer center, but I love a great goodie bag! I just signed up. I am horrible with all things makeup and hair, so I really need this
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Old school, I know, but regular old ginger ale on ice has helped me a great deal with nausea
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Have any of you had any difficulty setting up appointments that are soon, not a month from now for LGFG/ACS etc?
The meetings where patients get together are of course, when I work. The ones run (I think) by the ACS tend to be cancelled (last three months so far). I guess where I live, there are few volunteers and few patients that want to meet up at an official location. This forum, website is fantastic and it's about the only thing that works for me right now. My first (and only) appointment with TLC could have been better and I came out empty handed. Tip: I had quite a bit of hair, so wigs didn't seem to fit right. Now I have 1/8" hair and don't feel like going through that again, even for a free wig. By the way, the wigs that they offer for free do not have lace fronts, so bangs are pretty much it for most free wigs. There are other choices, of course, but not free.
Maybe tomorrow, I can get a prescription from my doctor so I can try to get a good wig online. I already have one, but it's difficult to style and keep it that way for hours.
There, I've said it. Hugs All
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A little about my wig
I've started wearing my wig since Monday (I had gone to cut my hair into a crew-cut the day after treatment #1 last Thursday. I wasn't going to keep my shoulder-length hair until it sheds .. I'll be way too emotional then). I was going to file a claim with the insurance but the process is TEDIOUS - well, first because I needed to find a provider that was in-network ... and in this big city of Houston ... guess what? There's exactly ONE in-network provider from the list that was given to me and that provider was far from me and, looking online, their stuff is WAYYYYY expensive and overpriced. Since I haven't met my deductible and co-insurance for out-of-network, I didn't even bother trying to file a claim. I bought some wigs on my own from cysterwigs - the style and color matches my own hair and since Monday, no one said anything other than that my hair looked good - did I just get it cut or colored ...? I did get lace front (because I like to clip my hair in the mid of the day) and monofilament top and side ... it makes for a nice natural looking part. So far, I've walked 4 miles everyday in this wig, have it on my head for 9 hours while I'm at work, and I walk out in the Texas heat and all. It seems fine
hopefully it'll last a few months before I need to switch to another ... -
I was supposed to go to the Look Good Feel Good Class this coming Friday, but it was canceled. Kind of bummed about it. I don't usually wear a lot of makeup, but without hair, I definitely need to add some to my daily routine.
Yesterday morning, my daughter and husband chopped my hair off, used clippers to get most of it off, and then my husband used shaving cream and a razor to take the rest off. Now that I'm bald, I actually look the part of a cancer patient
Hope everyone has a good day!
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Sweetp6217: Sorry you're having trouble with ACS. It does seem like everything is during work hours unfortunately. I had to use my lunchtime to go to the LGFB class. In my area, a few classes got cancelled. In the session I took there were only 2 of us. But another one was at capacity so I guess it just depends. Have you checked the website to search for classes in your area? I found that the classes were held at locations other than at the ACS.
Also, check in your area for non-profits that have resources for cancer patients. I'm in Northern Calif, and there are 2 non-profits near me that offer services such as counseling/support groups, fitness classes, wig services, aid for caregivers, and other classes to help with lifestyle changes. Maybe your MO or navigational nurse can direct you. At my clinic, I received some info from the navigational nurse and, as it turns out, my physical therapist and surgeon are lecturers at these places.
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Walkingintheclouds, I think I'm on the same chemo regimen as you.... taxotere/cytoxan every 3 weeks. I go in for #2 on Friday, and am hoping the side effects are limited to just some nausea (taken care of by meds) and some cramping/gas/diarrhea in the first week like last time. Overall I've felt fine in weeks 2 and 3, other than tiring more easily and taking some naps in the afternoon or going to bed earlier. Hope you are comfortable and able to rest!
Welcome Makeup lover... with a name like that, the look good class is a must for you 😉 I think Paulette gave you the link to "Stephanie's top chemo tips" already.... awesome resource.... I've used a lot of those things already. Does your MO have you meet with a nurse or pharmacist for a chemo education session? I had one pretty soon after I found it I was doing chemo - they went over the chemo meds and their common side effects, talked about the meds I would be given right before chemo to help with the infusion (steroid, Benadryl and Aloxi, which is a long-acting IV version of Zofran for nausea). That's when they talked about my prescriptions for nausea at home (zofran to start 2 days after chemo, when the IV one has worn off, and compazine/prochlorperazine that I can take every 8 hours in between zofran doses if needed). They also gave me a prescription for Emla/lidocaine + something else cream that I put on the skin over my port 1 hour before chemo appt to numb it. Granted you won't need that the first chemo session since they will access the port while you are numb from having it placed, but good to have for future sessions! It sounds like all this is happening really quickly for you, so if there's no way to schedule an info session, did your MO, infusion center or hospital cancer nurse navigator give you handouts with general side effect info for chemo, including tips to: treat nausea, constipation or diarrhea, prevent mouth sores, prevent infection/illness/bleeding when your blood counts are low, and most importantly, when to call the MO and how to reach someone on weekends and nights?
Seems like neulasta (or the shorter acting Neupogan shot) depends on your age, health status, and the chemo meds/frequency.... so you'll need to check with your MO. I'm 55 and on TC every 3 weeks, so my MO checked my counts 1 week after my first chemo - they were quite low, so I got 3 of the short acting Neupogan shots (fri, sat, sun) and they came up to normal by tuesday. She will be checking counts earlier for session number 2, on weds with a shot scheduled that day and possibly the next depending on how low I am.
When you have time, You can also check with your MO or hospital for a list of local and online resources for wigs, hats, American Cancer Society resources like look good classes, plus others in your area. I'm really pumped about the BC support organization called Team Survivor (northwest chapter for me) and YMCAs free 5 week transitional fitness program for anyone recovering from cancer treatment. Kritti posted earlier in this chain about free house cleanings (😍!!!!) and there's a website devoted to BC freebies (I think it is www.breastcancerfreebies.org) - resources from wigs, hats, queasy drops/pops (the pink is surprisingly good for nausea!). That's where I learned about the free YMCA program... even my hospital didn't have that listed, despite being less than 6 miles from 2 big YMCAs that offer it.
Sunnyjay, Aren't the makeup brushes in the kit awesome?!!! Agree about the night cream.... so much richer than my usual lotion, my skin is just loving it! My class didn't say anything about scalp sunscreen either, but considering that skin prob hasn't seen sunlight in ages, I would think high spf or a hat for prolonged exposure, and would think a face sunscreen would be good if the scalp is sensitive. Thanks for the tip on Tylenol pm.... I will try that when I have my Neupogan shot!
VL22 - hope you get the same makeup kit as sunnyjay and I did! The tips/practice on how to create eyebrows was really helpful 😊
SweetP and teaspoons, bummer about class getting cancelled! Great tip from sunnyjay about checking other locations for look good... most of my area hospitals offer them, and on diff days with some evenings, so there's more to pick from. When you call ACS to sign up, they may be able to tell you if there are others already in the class. If that doesn't work, do you think they could schedule a 1:1 session for you if they can't get enough for a class? I think my handout said something about that if there's a conflict with work or sessions aren't available. It'd be way shorter than 2 hours and you could focus on the things you are most interested in.
Salasila, glad you found a wig you like! I am floored by the quality of wigs available - I thought the woman next to me in the look good class was also early in treatment and still had her own hair, until she took it off!
Thank you to all you courageous ladies sharing your feelings about hair loss and other chemo changes - it is really good to know that it's ok to feel scared, sad, worried, etc and to share those feelings with others who truly understand. I'm also really grateful to read how you are taking charge of these tough moments and not letting them wear you down.... Teaspoons, the image of ou having fun with your daughter creating wacky hair before shaving it off made my day! What a fun way to take a sad/traumatic event and make it a positive experience for both of you 😊.
Hugs everyone!
Willow
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Good to know the LGFB class gives such good stuff! I'm going to sign up but can't get into one until September.
Salasila- I am happy to hear you are ok wearing your wig even in the Texas heat. I have been worried about SoCal heat, but if you can make it in Texas, I can do it too! I have my wig appointment Saturday.
I had my port accessed for the first time today. It took two tries to get a draw but it was uneventful really. It didn't hurt, other than just being sore from where I'm bruised from port placement surgery. The nurse recommended arnica to help get rid of the bruising. Going to try that.
Tomorrow is infusion #1. Now that I know port is working well I am not nervous. I will report out, but I am highly optimistic.
Rebekah
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rdeesides good luck tomorrow
Paulette thank you for the link
Dodgers girl yaaay for younlast treatment.
Do,you all have a preference of shot vs pod for Nuelasta? Another choice left up to me.
Hugs to all. I don't start until next week so I am still in the learning phase.
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SusanGA - I love the Neulesta pod. You get it puton right after chemo - doesn't hurt. 27 hours later it starts to beep, then it starts working. You leave on for an hour, then remove. Very simple. Nice not to have to go back for a shot.
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Susan - I have no choice since I have infusion on Friday so I have to have to pod and it works fine for me
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I took Ativan before I went to bed, it knocked me down.. but I am afraid of the side effect and potential addition ..
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Makeup Lover, I am not getting Neulasta. It's not standard procedure. I am 45 and my blood counts are good, or so they tell me. May change if I get infections/ fever. Not bothering me now-bone pain sounds challenging!
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I ordered my wig online. Paula young wigs. Not expensive and it looks like my hair...kinda
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I did the LGFB workshop last week, and I really enjoyed it. I've been retired for a while and I had stopped wearing make up - still took care of my skin but had gotten away from foundation, etc. I was amazed at how much of a difference it made in my appearance! And the goodie bag was wonderful, with some really high-quality products. (Alas, nothing, not even the concealer, could cover up the gigantic bags under my eyes. I don't think anything short of plastic surgery could do anything!)
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Thanks Paulette and VL22. The pod it is. I have chemo on f.ridays as well and it will be easier
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Walking - what's the dosage of Ativan did you take? It knocked me out the first few times but now it doesn't work that fast anymore. My dosage is .5 mg.
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PauletteK, my dosage is 1 mg for Lorazepam (Avita)
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