Starting Chemo in July 2017
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Paulette, for constipation, have you considered a magnesium citrate supplement? I'm taking one (my naturopath recommended it) and it's doing wonderful things
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I think Orajel mouth sore gel is helping along with salt water rinses
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JenRuns- I'm drinking Apricot Nectar and prune if it doesn't work then I will go for stronger way. Since I stopped zofran today constipation should get better.
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Well I had my hair shaved off yesterday, down to about a quarter inch. I had it done when I went in to get a wig styled. Cried most of the time, but I'm totally a crier and have cried every step of the way! I actually didn't look in the mirror while she shaved
I love the wig I got and I found a couple cute hats. But for now I see myself wearing the wig all the time, it's pretty tough looking at my no hair head. And today is our 19th wedding anniversary! We can't go out because of kids sports schedules but I'm kind of relieved! Though I did go to the grocery store in my wig! Round 2 starts tomorrow for me. I think this time I might take the anti nausea meds preventatively starting the second day after chemo since I was told the meds I get during chemo should work for 48 hours.0 -
Emily, sorry the hair loss hit you hard, but glad you love your wig. I hope you eventually get to have a nice anniversary celebration with your partner! My husband cut my hair to half an inch several days ago, and I got my wig styled today. I wouldn't say I love my wig, but I like it. I have been wearing my cap when I go out, until today. I went to the mall with my buzz, and I didn't care. Then I saw a lady who has lost all her hair going about her business bare-headed. Actually, I am noticing ports and hair free women a lot when I go out now
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Since the weekend, I've used a wig for work, 'do rags for home and when I run errands, and sleeping caps. I placed an order on amazon for some headscarves, and they should be in my mailbox today. For you wig wearers, did you get a wig liner with your wig? I used one when trying on wigs at the cancer center but didn't think to ask to take one home. So over the weekend, I've been using the wig over what hair I had left and it felt like it would slip off. Yesterday, I went to the Look Good Feel Better class, and the instructor kept touching my "hair" to get my bangs out of my face when doing the eye makeup. I felt the wig slipping. Last night, I bought a wig liner at the local Sally Beauty Supply and it has made so much of a difference with keeping the wig stationary. And today, no slippage, thanks to the magical liner! It looks like the foot part of a nylon stocking, but it's reinforced at the edges. I got black to match my dark wig. But I think I'll get a nude color that matches my scalp to have a more natural looking part show through the wig.
Jenruns: Love the hat! I missed it earlier since I usually read these messages on my email, and the emails don't show the photos. I want to find a nice hat, but I don't really like how I look in hats. I usually wear baseball caps or visors... We no longer have the 3-day walk in San Francisco, but I'm a regular supporter for the Making Strides events in October. Once this is all over, I plan to do the Avon 39, a 2-day walk. It will be exactly 1 year from my first chemo treatment.
Emilymh: Happy anniversary to you and your DH! Hope you get some time to celebrate this weekend.
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thanks for the anniversary wishes sunny jay and leatherette. I see some women out with buzzed heads too and I think it's so great. I'm so glad to hear you went to the mall buzz headed, maybe I'll get there some day.
I don't wear a liner with my wig, it has a built in liner with "rubber" like material at temples and back of head and that keeps it in place. It feels like it will come off but the stylist promised it would not come off and I would get used to that feeling.
I'm really doing ok, I get a good cry out and then it's over and I move on.
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Hi Ladies:
On day 7 of my 2nd round of TC and I'm happy to say it's much better!!! The bone pain is now tolerable but the fatigue is hard to get used to. I caught up with the posts and I too had to finally shave my head. I have a wig but haven't put it on yet and I have several head scarves to go out with. I haven't had any problems with mouth sores but have been using Biotine mouthwash since the 1st infusion.
I hope all is well with you.
Kim
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hi ladies!
Doing ok after round 3 CT ! Still cannot tell about SE! That will be tmrw!
Sunnyjay: round 2 was so much better than 1! I feel You know what's going on so you are better prepared. Try to chew or at least have some ice in your mouth during the infusion time. It does help with mx sores. I would recommend no salt with the baking soda. Salt can be very drying, and what you have it's not a canker sore! It's SE from chemo. Biotene seems to be the best since it was developed for dry mx!
Paulette: day 5, so much better than 3-4! One more round ✅ Have you tried toppik?! For the hair bold spots! I have a lot of shedding and I put toppik on the bold spots! Just not ready to shave.
Dodgegirl: 77$! I would call and check on that! Crazy!
Tesse: round 3 done! Congrats!
Good week for all of us!
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Day 6 - it's not much better than day 5, still tired and no appetite. Hoping day 7 will be better as last chemo.
It's hard to eat when you have no appetite at all.
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So Sorry Paulette, was hoping today would be better for you.
I got a wig liner at the Feel Good Look Better class I attended last night and wore it today to run errands. I don't know that it helped my wig feel more secure, but it did make it feel hotter (not in the good way). I'm going to try using it again when the rest of my hair falls out. What a great program that is...I was blown away by all the nice products in my bag. I've actually never had such high quality make up and skin care stuff. I'm going to clean out my bathroom drawer and make room for this amazing stuff.
Best wishes everyone!
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I wore my hat today when I went out and it felt fine due to the wether is not hot. Still can't figure how to use scarf to wrap my head need to try it more often when I feel better
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Dmjmom: I was laughing when you said the wig felt hotter and not in a good way. To me, it feels like I'm wearing a baseball cap which does get hot, but I guess I'm used to it since I used to wear ball caps on the weekends and when I work out. But I'm also getting hot flashes so I'm always hot these days!
Paulettek: I found a few videos on YouTube on how to tie scarves but I haven't tried it either. I'll look for them again tonight and link to them here. I have a couple of headwraps that you just place on your head and tie in the back, so it looks like a bandanna but it's so much easier.
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i also need to learn how to tie scarfs, lord but survivor pals have lpassed on tons of scarfs but need help,with the tie thing
Hair is minimal and really sgungie , may do another cut
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Proud - soon we will be an expert, will be shaving my hair tomorrow, I know it is going to be hard but it's better 😥😥😥
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maybe i should call my hairdresser, mine is down right wierd
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Weather changed kind of cold in Northern California the last few days so hat day for me. Save my scarves for the sunny days.
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I can't tie a scarf or wrap a buff to save my life ... tried YouTube and ended up frustrated as all get out. If y'all figure it out, share the links that you used!!
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Jenruns: I tried tying a headscarf last night and was successful. I learned it from the Look Good Feel Better booklet. Here's a video. The one I did starts at 1:35. The 1st part you don't see is a half knot to secure the scarf then take the 2 ends and just twist them together.
On the LGFB website it's the Rosette under the Scarf Techniques section:
http://lookgoodfeelbetter.org/programs/beauty-guid...
While you're on this site, check out the t-shirt wrap using an old L or XL t-shirt. I couldn't find a video but they showed us in the class and it was so easy!
Here's another one I haven't tried yet but looks easy enough since you just secure the scarf with hair ties:
She also has a video using an infinity scarf. Good luck!
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Hi all!
Well, it has been quite a week. I met with my MO, and we are changing the chemo regimen. The initial decision was to move to Abraxane (basically Taxotere, but not delivered with the solvent, which is what generally causes the allergic reaction), DD every 3 weeks (2 more treatments).
But, the hives came back with a vengeance yesterday so, today I am going back on prednisone to try and get them to go down. I also have swelling in my hands and wrists (on my right arm, where I lost 4 lymph nodes, it is worse and swelling is up to my armpit... really hoping this is mainly from the hives and not the start of lymphedema, which I haven't had any signs of since surgery in May).
Because of all this, no chemo this week or next. I might need to move to Abraxane on a weekly dose, which will mean a port for me because my veins have been hard to work with. A/C was also a potential new cocktail for the last two infusions, so I'm asking about this to see if it would keep me on the every 3 week schedule, and no port. But, of course, I'll go with what is ultimately best.
This hives and swelling nonsense is horrible. I wouldn't wish this on anyone. But, I'm hopeful it will clear up, and I'll be back on track soon enough.
What a pain in the a**. Just a bit of venting. The first infusion went sooooo well. I had minimal side effects, was feeling pretty decent during the week leading up to infusion #2, and now I feel like crap. I seriously wonder if I should have made this choice (I had a low oncotype, but on the high end of low... tumor was removed fully, no lymph nodes, etc. but because it was 6cm and I'm 42, they recommended chemo as a good insurance policy). I know, logically, this was the right choice, but emotionally, I'm struggling with it because these side effects are debilitating.
Okay, onward and upward. Just a little venting... then need to move forward to get on with it.
Hope all of you are well and SE's are minimal!
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Oh LoJo100, so sorry to hear about the hives coming back, plus this swelling... Yikes! I hope it gets resolved soon.
I just finished round 2 so we'll see how the side effects go for me. They did Taxotere first this time and I didn't feel any flushing like I did last time. But I felt woozy when I finished and was walking back to the car. Hopefully it's nothing. Just finished lunch and will take a nap soon. Since I took the steroids yesterday I only slept 3 hours so I'm pretty tired right now.
Regarding my tissue expander, I have developed some dryness in the lower half of my breast so I'm wondering if it's a side effect from chemo, since it started around the same time as the hair loss. I have a message in to my PS so I'll see what she says.
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Hi all,
I'm cross-posting to a couple of topics to say hello. I've been a lurker on these boards for a while. I started weekly Taxol in July and will be following it with AC: 12 rounds of Taxol, then 4 of AC every other week.
I just finished Taxol #5. For the first three, I had a steroid with my premeds and ended up with side effects of heartburn and fatigue 3 and 4 days after treatment. My MO gradually stepped down the strength of the steroid with each treatment, and I didn't have the steroid with #4. The week from #4 to #5, I had zero side effects. I mean, nothing. Felt totally normal and healthy. And so far so good for #5. So I think the side effects were only from the steroid and the crash. Moving forward, I won't have the steroid for the rest of Taxol.
Am curious to learn more from those of you who've done Taxol followed by AC. Best wishes to those of you who also started in July.
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LoJo100 - so sorry to read about your hives came back and the swelling. I hope they resolve soon so you can start your treatment. Dealing with chemo is not a simple matter. I'm seriously thinking it takes a strong person to hack this out.
e strong we will see the end of the rainbow.
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LoJo,😕.
Well, I am pretty sure that the next time I wash my hair, half of it will be going down the drain. I buzzed to three quarters of an inch, so may go shorter if this process is not quick. If I pinch a little section of my hair and pull gently, there's a fair amount of hair between my fingers.
I think the mouth sores look like they are getting better, but they still hurt like a bitch. But last night I was able to eat out with my husband and enjoy a beer. I had to eat very carefully.
I was trying to keep my diagnosis from my mother in law, who is 88, has pancreatic cancer, and dementia. She is asleep most of the time now.Wouldn't you know, the one thing she is noticing is my hair, and keeps asking me about it. I've been wearing a cap, and one day she said, "I can't believe you got all your hair under that cap!" then fell asleep, so I didn't have to say anything about it.
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My hair started falling out 2 weeks to the day after my 1st infusion. Luckily I had just gotten a shipment of scarves and hats that morning, so I was pretty well set. I got my head shaved the following day because my scalp was so sore I couldn't stand even putting a comb through it, much less washing and styling it. My hairdresser is a sweetheart - she doesn't charge for chemo head shaves and she schedules them after her last appointment of the day so there's no "audience." I was quite comfortable with the whole thing, since my hair is thick and it was making such a mess - white hair + dark floors = lots of dry-mopping.
I did the "Look Good Feel Better" workshop on Tuesday (I haven't worn makeup on a regular basis for years) and at the end of the day when I was getting ready to go to bed I took off my hat and immediately thought of the movie "To Wong Foo Thanks For Everything Julie Newmar." Anyone who's seen the movie probably knows what I'm talking about - I looked just like one of the "ladies" after full makeup and before adding the wig. Cracked myself up!
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Uh, my fingertips are pruny, as if I was in a bath too long....what's this
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sunnyjay, thanks for the links!! I'll check it out and practice...
lojo, so sorry to hear about all of the issues! Hopefully they'll figure out the right mix for you....
Starfishes - I'm doing A/C then taxol. Glad to hear you've had minimal side effects. have heard the taxol is much easier to tolerate than the AC... hoping that's true.
Leatherette, I'm so sorry to admit this, but your story about your mother in law made me giggle. Hoping all works out ok and she doesn't really figure it out
Pingpong: that's so thoughtful of your hairdresser to do that. Glad it worked out for you! I did the Look Good.. class too. I wear makeup all the time, but it was a great help to learn how to draw in my eyebrows (when that time comes!) and all the freebies were cool!!
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Jenruns, no worries, it was meant to elicit giggles.😀 My mother in law is a trip!
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Its very positive to see smiling ladies all around...makes me forget that I have completed just 4 out of 12 weekly cycles....long way to go still.
As far as side effects goes -
Hair Fall - 20% approx after 3 weeks. Dont know, but maybe cold pack is working?
Mouth Sores - minor, i keep ice cubes during infusion
Constipation/Diarrohea - none for both. Taking probiotic milk twice daily.
Weakness - happens on Tuesday every week...third day of dose. By Wednesday it remains like 30% or so.
WBC Count - was about 6000 (range is 4000 to 10000) before starting first dose. Came to 5500, then to 4000...back to 5000 now. So kind of borderline in catching infection
RBC Count - howering in the range of 10 to 12.
Nausea - happened just once for three hours in last week..doc prescribes anti nausea meds for three days after infusion.
All in all, trying to eat healthy, and something or the other every few hours. About 4 litres of water as well. And frankly, if these remain like this for rest of cycles without increasing too much, I might pass through this difficult time....and move on to radiotherapy.
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Sunnyjay - thanks for the link I need it badly!!!
Theantz - you are doing great .....
Today is the day I will go Bald. 😕 I could put my wig to check it out
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