Who is starting chemo in September 2016?
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Hi Ladies & Gent - I noticed this thread and popped in to see how things were going. My last chemo (TCH) was July 26th. I picked up so many helpful tips from these threads when I was going through chemo that I want to pay-back. You can find so much info here but like searching on the internet it can lead you down many rabbit holes before finding the right tea-party.
Dawnk1105 - your post is what made me decide to join this thread. I also had vision problems that would get worse after chemo and then improve until the next infusion. I'm hoping your vision doesn't get much worse but seeing that you stopped driving was a red flag for me. I stopped driving (self-imposed like you) too. I ended up having chemo-related macular edema a very serious condition. I lost the ability to fine-tune focus. I'm the first patient for my MO to experience vision SE this serious. He was familiar with constant tearing eyes or dry eyes and some blurry vision but not as bad as I was experiencing. I had an appointment to see an ophthalmologist and was given eye drops to keep the swelling down while they closely monitored me while going through chemo. I'm still seeing the ophthalmologist post chemo. I'm back to driving now! Keep a close 'eye' on your vision if you find it getting worse and talk to your MO about seeing a specialist sooner rather than later.
I also noticed that some of you with ports were experiencing pain when they were accessing your port. It may have already been mentioned earlier in this thread but are you using Lidocaine/Prilocaine cream on your port site before the infusion session? The only thing I feel (still having Herceptin every three weeks) is pressure when they push the needle in but no pain. If you aren't doing this before chemo - check with your MO for a Rx for this. I went in for unscheduled labs because of a high fever and since it wasn't a chemo day - didn't even think about putting the Lidocaine on, OUCH! I was shocked by how that felt. NEVER forgot to put the cream on after that.
Interesting, I did the L-Glutamine protein powder and vitamin B6 protocol during chemo to help with peripheral neuropathy. I did experience a little in my big toe and next toe on one foot during treatment but that was it. Thought, 'Whew, dodged that bullet!' Then about a month after stopping chemo and after having stopped the preventive measures I now have it in the toes of both feet and my finger tips of both hands. I wish I had continued the L-Glutamine protocol post chemo too. My RO commented they don't do a good job on educating patients that SEs continue post chemo as cells affected by the chemo continue to divide, hence the very long recovery period for some SEs post chemo. Same thing with my nails - I used the strength and hardening nail polish during chemo and iced hands and feet during chemo and only experienced slight darkening in my nail beds. Now post chemo -- my finger nails are breaking and splitting - mid nail bed - I can't even clip them that low. CRAZY!
How lucky for all of you that it's the fall season when temps are cooler and scarves, hats and wigs will keep your head warm! If you're lucky to have the American Cancer Society 'Look Good Feel Better' program available in your area - DO IT - it's free! This is a great one-time session where they cover make-up tips and over-all skin care while going through chemo. You'll get a kit that will include full size make-up products and tools from expensive and well known companies. I had many Este Lauder products in my kit. They have kits to closely match all shades of color When I came home my daughters were shocked to see the quality and quantity of make-up and brushes that I received. There was also a head-wrap session. They showed us several different ways to wrap your head with different types of scarves including hints on how to keep the scarves/wigs from slipping. If this all sounds good - the actual best part was being with others going through the same things as you with different stages of hair loss being comfortable without head coverings and having fun applying make-up while following along with an aesthetician. I was hesitant to go, thinking, 'Who needs another appointment after so many already!' It was an uplifting experience and even though I knew I probably wouldn't use all of the make-up, having the products and tools to deal with losing eyebrows and eyelashes and look good while going through hell was a comfort. Please consider doing this for yourself.
Stay hydrated! Find something that you won't mind drinking often. Clear flavored carbonated water (.99 for a litre @ Trader Joe's) and foods with high water content (smoothies, fruits and veggies, jello, ice-cream etc.) helped me - especially with not needing to go to the restroom so often as I did when just drinking water. Flush that chemo out and help your body recover!
Oh my, sorry for such a long post in your thread where I don't belong. I hope your chemo SE's are few and mild but if not, remember you do have an end point and you will get there and having gone through this makes you realize just how amazingly strong and brave you are. You'll find this experience will put things in perspective making it easier to cope with smaller issues going forward. Silver linings right?
My best wishes to each of you.
Vicki
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Thank you for sharing all the tips, Vicki, and congratulations on competing your chemo in July. I'd never heard of that scary eye complication. YIKES!
Lyn
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Ha ha bagsharon. If you think of something let us know so we can all copy it.
Went to gyno today. 3 periods in one month could be body is stressed from chemo, hormone stuff, growth on uterus, etc etc etc so I go tomo for a pelvic ultrasound and when I get my blood drawn Thursday for chemo she ordered hormone tests on it. We shall see.
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Here are some ideas I came up with:
Sinead O'Conner before she became crazy
Brittany Spears when she was crazy
G.I. Jane
Sigourney Weaver's character in Alien 3
The blue chick in Farscape
Grace Jones
Amber Rose
I'm leaning towards crazy Brittany Spears. Just need a white blouse, white socks and a plaid skirt. Now If only I were invited to a party.
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My hair is driving me crazy!!! I shaved it on Sat. to about 1 inch in length. It is daily falling out, with the most being in the shower. I can't seem to get it to a stopping point and end up covered in hair. Blech. Has anyone shaved her head much shorter,like to a stubble? Does it help with the shedding, or will I just be shedding shorter hair and be equally annoyed? I've been lint rolling my head a couple of times a day, but it only helps a little bit. If it's going to all fall out, then just FALL OUT ALREADY!!
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NotTheBoss I shaved my down to like an 1/8 th of an inch. My husband used clippers with a #5 blade. I know hair is coming out but I can't really see it anywhere. I shower in the morning and rub it with body wash and a wash cloth really easy since my head is so sore. But it Def takes alot of the hair off.
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Thanks LynnC1968. If you're not noticing it all over you, I might just do it that way tomorrow. I'm tired of hair everywhere.
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misslil, finished my 2nd round of THCP and I am also on fluids every other day. I have had a tough time with my stomach. The fluids tend to help me - I have 4 more rounds to go...hoping it gets easier.
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DennyJ - If you don't have nausea meds...get them! They will definitely help! I only get fluids once after chemo (Day 6) and that has worked out well for me as my bad days the first round were 8 & 9. I am on Day 5/21 for round 3, fluids tomorrow. I haven't seen an increase in fatigue or nausea per se, just different things on different days.
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Hi everyone. Sorry to hear about the port problems , scheduling problems, cdiff issues, vision complications , 3 periods (!) and all these other thing that you guys should NOT have to be dealing with right now. So frustrating - like the cancer is not enough? Sending hugs to all. ❤️
I took the plunge on Saturday ( my day 15) and had my hair buzzed (#5). I was scared to do it, but more scared to watch it come out slowly (or not fast enough) over the next week. Some one at my center recommended a fabulous salon and stylist that takes care of women and children with cancer - completely for free! I had a consult 2 weeks ago with Marino Cartier ( you may have seen him on HSN). My daughter went with me and we talked with him about the color and style I would want. He said it would be in in 3-4 days and I could schedule the buzz and wig styling at my convenience. He did recommend doing it sooner rather than wait til it starts looking and feeling bad. So on Friday night , I went to a big family wedding in my still intact very own hair, so I looked like myself and felt comfortable and had a great time. The next morning , my daughter was home from college , so she and my mom went with me to the appt. wasn't sure what to expect, tears emotion , regret????
Actually I felt very empowered , like I was taking control of something for a change in this shitty cancer deal. So since my daughter has a dry , but funny sense of humor (she's 22) we actually ended up smiling and laughing and having a very positive experience instead of a traumatic one. Even my 82 yr old mom who is usually a bunch of nerves and emotions... Was smiling and laughing along with us.
Not trying to insinuate in any way that this ordeal is easy, simple , minor or nothing to stress about because it is!
I just wanted shareeexperience for those that are dreading this phase, that there are many ways to do it.
Martino Cartier has two salons in Jersey http://martinocartier.com/about.html If you know anyone in the Jersey areA - I would highly recommend him. He made us feel very special. He gave his time,products, special hairbrush for the wig, revitalash and his skills for free. I of course gave to the charity "Friends are by your side" that helps women and children with wigs for cancer. Felt truly blessed with that experience❣http://friendsarebyyourside.com
Martino recommended gently washing with gentle shampoo and massaging the scalp when it's sore, because that means the hair is trying to push out.
Also what I have been doing is massaging my scalp with either avocado oil or jojoba oil for dryness at bedtime,
Here's a couple of pics of the big buzz... My daughter requested the Mohawk look for fun...he obliged ! Having a really good week ! That will end Friday with chemo# 2. WIsh I could be more certain what to expect! So I know if which days I will need to take off ahead . Oh BTW, I am scheduled to do the LookGood Feel Good seminar on Nov 16, the closest one available. I'll be needing ALL tips and tricks. Hoping I even still have lashes and brows by then! I'm Wearing the wig to work with the kiddies, but ready to yank it off when I get home . I wear classes and it gets tight around my ears. Trying out a few bandannas, hats and scrves too. Gonna mix it up.
I scared the day lights outta myself when I used the bathroom in the middle of that first night!😬😳
Good luck to every one dealing with treatment, decisions , s/e's and everything else, stay strong!!!!!!!
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Angela....Kids are funny..My 12 hear old wants to see my head..I wasn't ready until recently..I close my eyes so I don't see the reaction though..cuz I don't look atyself anymore. He said my wig looks like Linda from Bob's Burgers...which I guess it does..its.poofier than my hair......My 17 year old is sweet and supportive..she wanted to see also..she helps me with my wig. She made no comment. My 19 year old came home for a break and she said I look like Gollum..I think she was trying to be funny but WOW .
Cc2016..thanks for the cap link!!! Some hats I wore with my pixie now don't work with my bald head!
Ware..good luck with the gyno!!! And 2 better be it for me..I called my MO...he didn't seem like 2 periods was a problem. Good news you are close to 80 percent done!!!!!!
Hopefulyogi..yes last weekbefore 2nd time was good....my mouth almost back to normal for a bit...it was nice but after 2nd I find my stamina much more affected...I got sick too....so just make sure you rest when you need to..fatigue always sneaks up on me..I am bad at.taking it easy but one day I literally couldn't get off for the couch!!! When I do more I fade quickly..and my MO said that is accumulative! After the wedding plan to relax the next day if you can!!!!
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Lmecken-Guess what movie had to be on the afternoon I had my final hair washing and knot cutting? Gollum appears and it's my husband that says we have the same hairstyle. Yep, but too soon. But know I've got to force myself to get over myself. Two days later got a buzz cut to look like...nothing compared. Week later picked up my wig and actually felt decent out and about. My kids were amazed by the wig even though I've been wearing scarves almost constantly. Took the wig off before dinner and my 7 year old asked what my real head looked like and I finally lifted the scarf. "Well that's different." And I had been so worried about how she'd react. My 12 year old is quieter about it but says she's fine. I gave her the option of what I should wear for her soccer game and she left it up to me. Maybe it really isn't such a big deal. So 2 weeks after the zombie buzz and I still have the zombie buzz. !? Think I look like Diary of the Wimpy Kid now...
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I love everyone's wig comparisons. I'll add this--mine looks like Peppermint Patty. Crazy but true. It's real hair (free one from ACS) and it is so thick and coarse that it won't curl. All I can get out of the bangs is that same little poof! It's even almost the same color! My family thinks its hilarious when I say this, but it's true! LOL! My synthetic wig is hot and itchy and way too puffy. It is more curly and has a mind of it's own. If anyone has any suggestions on how to "rebend" the hair so it stays, I'd appreciate knowing your secret. I have used sponge rollers and hot rollers, according to instructions, and as soon as I take them out it goes right back to it's messy self sticking out all over the place. Grr! (and I paid a LOT of money for that one!)
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OMG, Gollum, CC! My buzz is this evening and I'm thinking I'll look like Uncle Fester (is that right?) from the Adamms Family. He's positively handsome compared to Gollum.
Lyn
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Emily completed #3 of 6 today (half way there, woo hoo!). It was kind of a long day, which was a bit unexpected. The nurse told us they had to remix her meds to increase the dosage, but It wasn't clear why. We see her onc on Friday, so we'll get clarification then. Otherwise, everything went smooth. Her port worked like a champ. I totally agree with our visitor above. If you aren't using numbing cream for your port prior to them sticking you, you should be.
I see lots of talk about head gear. Emily has really preferred to just go with a frilly do-rag thing she got from the wig store, even though she has several different options to choose from. It doesn't matter much to me as long as she's comfortable. Once the weather gets a little cooler, I suspect she'll opt for the wigs more.
Time to print out another SE tracker. Time marches on, stay strong!
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Hopefulyogi-- I absolutely LOVE your wig! It is gorgeous and the perfect style for you. Is this your regular style?
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hubs said gollum, I thought a zombie Charlie Brown. I think uncle fester was cue ball bald - I've got hair still just thinner than it should be. I'm not sure if it blonde or silver it's so light on my porcelain white scalp. Guess I should be happy it's still there but I still keep it covered 90% of the time. Support story- hubs and his brother (who was visiting the day I washed most of my hair off) decided they would shave for the rest of the year with me. Before you say awww, they're normal cuts are maybe 1/4" buzz, maybe. Not much of a stretch for them. Got a photo of BIL with his two sons a week later, the three shining bald. The last time I saw the boys they had a thick head of stylish hair. The youngest is in the process of enlisting so his head was numbered anyway,the oldest- "aww" him. Poor guy. Sweet guy.
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HopefulYogi - love the wig---looks great!
I buzzed my head again tonight, down to the smallest attachment on the razor. So far, so good, I didn't have endless hair coming off in the shower. I've worn bandanas the last 2 days, and it's been going well. I work retail, and almost no one is really reacting to it differently. They are still making eye contact and asking questions, etc. The next test will be when I see a bunch of people I know, like at church. Then I might get a lot more sympathetic looks. But maybe by then I will a bit more used to it.
My legs and I are playing hair chicken. They have a couple of weeks growth, and less than half has fallen out. I refuse to shave, though, gosh darn it! Why can't all the hair that I WANT to fall out, just fall out already! Chemo#2 better just knock the rest of those darn things out!
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You guys are awesome! I'm so glad that even through all of this, I (and obviously all of you) can keep our sense of humor! Gollum, Zombie Charlie Brown, Uncle Fester, LOL I personally likened myself to the Crypt Keeper. I guess that's perfect for Halloween!
HopefulYogi - Glad you were able to take control and have a good experience! You look great! I still need to have my wig styled a bit more to my liking.
Day 6/21 of Round 3 and still feeling pretty well. Nose dripping and some congestion, a little D, but nothing to complain about. I have noticed a little bit of neuropathy in my feet, which I haven't experienced before and will be overthinking and paying particular attention to for the next couple of days to be sure.
Stay Strong & SE Free Everyone!!!
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lmencken, I was so worried about my son's reaction to my buzzed head, but yesterday he surprised me with th sweetest comment. I was taking my mom to a concert. Got dressed and did full make-up, and before I put the wig on, my son said "mom, you can just go like this," I asked what he meant, and he said "you look good, normal" ... He sometimes drives me crazy with his stubbornness, but these sweet statements melt my heart. Even my DH hasn't made a single comment on my head in 2 weeks since the cut.
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smilethrupain , seq24, beachbabyk, nottheboss : Thankyou! ❤️
I've had great reaction and support from my coworkers at school and all my kindergarteners have said they like my hair! I would have sworn at least one kid would have blurted out " why are you wearing that wig??" Lol. I did get some sideways glances from some of the older kids in the school, though.
Seq24 , the guy I got my wig from trimmed it up a little for me - bangs and around the face. He said I could use a curling iron or a straight iron (up to 335 degrees, I think) if I want to. He said a blow dryer will give it a lil more uuumph if it needs it. He told me to call or come back if I need anything. He gave me a certain brush with it ( Wet Brush Original Detangler) And said the most important care tip is to brush it at least 6 times a day! He said he would be able to take one quick look at me an be able to tell if I've been brushing it enough or not. ?? We'll see! My regular stylist also told me she would help me out with styling if I need it. Maybe your regular stylist could help you out. Good luck!
It's very similar to my normal way of wearing it but just a little longer and a lot fuller. My normal hair is real thin and fine. It's also more the original color of my hair. It's been going gray for years and I color it, but since I'm so gray it always fades out much lighter. I love this color "sable bronze". It's a Raquel Welch wig. How sexy, huh? ( for those of you old enough to know who she is! Lol)
I've got to call ACS again, I called once and spoke to someone, and they were supposed to have some one locally call me back about a wig but never did. Good to have another option.
My friend is coming in from out of town tmrw night to go to Chemo round 2 on Friday with me. I tried to prepare her for just how LONG of a day it is there, but she's coming anyway,lol - and I'm glad 💗
Smilethrupain : your son , 💗 How sweet!
Stay strong & fight on! 💪🏻
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Round #4 today. Last day for AC...goodbye AC. I hope you did my body good. I hope you've knocked out any floaters...I have faith you have!
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Congrats Ware!
I had my last AC last Friday....I now have 12 weekly Taxol to complete😥...I start next Friday. How many Taxols do you have to complete?? I see there is a weekly Taxol thread on here.. I am going to check it out.
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Ware and Nayda- I also finished 4th AC last week. I start 4 dose dense Taxols on 10/26. That means yesterday was the midway point in My chemo! Can't wait to see what pleasures Taxolhas in store for me, but at least I've got my eye on the prize (Dec 7th)
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Congrats ladies! That is awesome!
I am having my third treatment tomorrow. I got my new port on Tuesday and I am praying this one works better. It was sore yesterday but is better today.
Here's to little to no se for all of us.
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So good to see that many of you are finishing your AC component. Woo Hoo!
Sam13, I'm glad that Emily is tolerating her treatment well. I'm sorry about the long day & will be interested in why the footage had to be tweaked.
Looking good, HopefulYogi!
Lyn
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Wow, congrats to everyone finishing up AC...That is awesome!
I love all of the wig stories from everyone. I have been doing hats but have been seriously considering a wig. Do you find them itchy?
So I am trying to renew my passport because I would like to go away when chemo ends and before my surgery. Well, this has been a process! I called the National Passport Agency because in the photo directions it stipulates that head covers / hats cannot be worn for the passport photo unless it is for religious reasons. So when I called the agency, after pressing every number possible to get a real person, I explained my situation. The woman told me that I could write a letter explaining my situation but she didn't know if it would work because hats are technically used for vanity purposes. So, I took a picture with my hat / beanie and wrote my letter.....hopefully it will work. I am really hoping I do not have to submit a picture of me and my bald head!!!!
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Congrats ladies on being done with AC! Wishing you the best moving forward.
I have 4 more sessions of TCHP( Sweet Jesus. ) praying for the strength to press forward.
Hahlyn
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All done with AC! I will be getting 4 doses of taxol, once every two weeks. That puts me right up against Christmas if all goes as planned. New Year's Eve will be one heck of a celebration night!
I felt sick during this round. I felt that I could vomit at any moment. I didn't but, wth? It wasn't even with the chemo but with the pre meds.
Good luck to everyone who is on this ride with me. I don't like it very much but at least we all have good company.
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It is soooo encouraging to hear of you ladies finishing up on the AC treatments. I still have 2 to go, but the first 2 were reasonable, so it's not frightening. Then I will have something else that the doctor hasn't decided yet, but will be 2-3 more months, and then 6 weeks of radiation. So, that puts me in March, maybe? Well, it can be done. I complained to my MO today about my headaches (just normal lack of caffeine headaches and stress headaches), but he wants to do a head CT to rule out any tumors. I suppose that's a good idea, but I'm not very enthusiastic about it.
On a random note, I sweat a lot at work (active job, air conditioner not cold enough, hot flashes...), and I usually come home and wash off my face. For the last couple of days, I came home, washed off my face and thought... what is that horrible taste? It's not salty at all, but very metallic and gross. Oooooohhh, it's the drugs being sweated out of my body. Yuck. Just thought I'd share.
All the best!
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