Starting chemo August 2017 - would love some moral support!

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Willow22
Willow22 Member Posts: 220
edited January 2018 in Chemotherapy - Before, During, and After

Hi, I'd love to connect with others starting their chemo around the same time as me! I have day surgery to clean up a positive margin on 7/18 and will have an infusion port placed at the same time, then 4 rounds of Taxotere/Cytoxin spaced 3 weeks apart. I'm getting good info & support from my MOs office, but nothing can beat sharing tips and experiences with others on the same journey!

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  • Autum1031
    Autum1031 Member Posts: 31
    edited July 2017

    I am also starting chemo in August - on August 1st, actually! I've been lurking in the July group to get an idea for what is ahead, but would love to start an August group.

    I am doing 12 weeks of Abraxane, weekly, followed by AC, 4 rounds, spaced 2 weeks apart.

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  • Castigame
    Castigame Member Posts: 752
    edited July 2017

    Turned 47 this past Jan at diagnosis. BMX on 02/15/17. 4/17 pos nodes. Stage 3A and 1A. 8DD chemo (4AC 4 T) every 2 wks. #8 on 06/26/17.

    Due to staging and multiple tumors, my chemo dosages were extra. Red Devil was about 1160mg and taxol was at least 320mg at lowest weight.

    I read and researched all tips. I was active when I could. Ate when and what I could. I walk down the aisles of local supermarket as soon as it opens. I learned Epsom salt scrub is hugely beneficial. The Salt scrub saved me from pain and neuropathy. I could not ice my hands due to arthritis. Ativan eliminated anti nausea medicine need for me. I did have crying episodes from pain. My blood test numbers were always good other than general toxicity towards the end.

    No doubt chemo sucks and is rough often times. Glad it is out of my way and post chemo scans were clear. I have minor bone pains but it is a right price for me.

    Post chemo. stamina is low but enjoying my freedom. The attached is a week after last chemo.

    Mimi

    image

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    Rebamacfan123, you look amazing! Thanks for your words of encouragement - you've been through so much and it's wonderful to hear how you managed it! Can you tell me more about the epsom salt scrub, how you did it and and how it helped?

    autum1031, wow, we have a lot in common! I was also diagnosed in May - biopsy initially showed DCIS, but surgery showed 2 small areas of IDC (5.5mm & 2mm). The DCIS was ER-, and the larger tumor was ER+, but only 7% and very weakly stained so all 3 MO I consulted said it's a TNBC and tamoxifen won't have any effect on it. I've also been learning as much as I can here and from other websites, and trying to have the basics purchased for comfort and dealing with side effects before I start chemo. I'm going to do cold capping to try to keep my hair, which seems like a huge nuisance, but I'm scared of the permanent hair loss risk with taxotere.

    Glad to have both of you to chat with



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  • Castigame
    Castigame Member Posts: 752
    edited July 2017

    Epsom salt ls good for

    1. Aches and pains - it fiiled gap tylemol and claritin could not fill it.

    2. never got to ice my hands - has not had problem what so ever re neuropathy

    3. Darkened feet and hands- noticed significant darkening right after AC #2.1

    4. Natural moisturizer and exfoliator- other than sun screen I dont use anything else. Especially for those of us at risk for Lymphedema, this was huge for me.




    My daily scrub routine is ( the entire scrub takes about 40min for me)

    1. Add water just to make sort of glob w epsom salt. Chemo week I mainly use work out pain ease type (usually first aid isle) Non chemo week I use detox type(beauty and bath isle)

    2. Scurb my hands w the glob and put on exfoliating gloves . Put some in my gloves.

    3. Scrub my feet and put socks. (Old socks I wore the prev 24 hrs)

    4. Scrub all other parts of my body.

    5. W leftover salt glob add hot water and soak feet more.

    6. Listen to some nice music and scrub more.

    7. Rinse it off. After rinse take socks and gloves off. Rinse one more time.


    Again it worked beautifully for me to avoid good amount of side effects. I still take the salt scrub shower daily. Everyone is diff.

    P.S. ladies if you have had more than 2 nodes removed, please ck it out FLEXITOUCH PUMP. I had 15 removed from right arm.I am right handed. The pump made a world of diff for me. I put pics of my arms in July 17 chemo.

    Mimi



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  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    Hello all!

    Like autum1031, I too have been lurking around the July 2017 posts. My first chemo session is actually on July 27th but it feels like August. I am looking forward to an EKG/ECHO stress test (tomorrow), will see the heart doctor (for the first time) on Tuesday, followed by a re-scheduled PET scan appointment a few minutes later. I want to get that PET scan in before my hematologist oncologist is off work the next week. Tuesday the 25th, I'll be getting my port put in and later that day and my husband and I will have that educational appointment with the H/O's nurse. The treatment that is planned for now will be for an entire year in all, with chemo as part of that for only the first 6 treatments, every three weeks. TCHP (Taxotere, Carboplatin, Herceptin and Pertuzumab). There's also supposed to be a neulasta on body shot (hope mine doesn't leak like some have). After the 6 treatments, the lump and the lymph node(s) may be all but non-existent. Then surgery to remove the biopsy clips and whatever may be left. Then, H/P for the rest of that year.

    What they haven't told me yet is how often I'll have to go in for blood tests, etc. I do still plan to work and fortunately, there are a few people who can cover for me, so no problem there. Added "bonus", my insurance doesn't appear to cover cranial prosethis'. I gave them the code A9282 which I found on a lovely website AND on a PDF list of codes for my insurance company and she said in the most dispassionate tone, "not covered". I'm not going to say what insurance I have for fear of retribution. At least the Cancer Society will try to help.

    rebamacfan, you rule! I'm hoping to try out your epsom salt treatments. This website is like home and everyone is wonderful. Hugs.

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  • teaspoons
    teaspoons Member Posts: 23
    edited July 2017

    Hi ladies. I was hoping an August chemo group was going to get started soon! Thanks for kicking it off, Willow22.

    I am also starting chemo on August 1st. AC every two weeks for two months, followed by T (Taxol) every week for three months. Looks like chemo will hopefully be wrapped up by the end of the year. Tomorrow are my scans and chemo training session and then port placement on Wednesday.

    Rebamacfan1 - Good to know about the Epson Salts. I am still having a lot of nerve pain from my bmx, particularly on my chest and the backs of both arms. I wonder if the salts for pain would help? It's worth a shot, since this nerve pain is wearing me down and nothing I've tried has helped so far.

    Pretty nervous about starting chemo but glad we can support each other through it :)


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  • Kapisi
    Kapisi Member Posts: 7
    edited July 2017

    Hi guys I know you guys a talking about chemo but in the other hand I'm going for my biopsy on my complex cyst on my left breast and I'm really really scared...

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    Welcome sweetp6217, teaspoons and Kapisi! Sucks to be dealing with all of this instead of hiking and camping like I planned this summer, but so grateful to be connected with you ladies as I deal with all the uncertainty, worry and potential side effects of chemo!

    Rebamacfan1, I am definitely going to try the epsom salt scrub, thanks for sharing!

    Sweetp6217, my insurance also doesn't cover wigs (they were very explicit in saying they only cover prostheses that are needed for mobility. I'm going to do cold capping - I don't care so much if I lose my hair, but am worried about permanent hair loss on the taxotere. It's somewhere between 6-13% risk, but I'm just not feeling super lucky right now 😕

    Kapisi, we've all been thru that waiting game of finding out there's a concern, waiting for biopsy date, waiting for pathology results, waiting to find


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  • rdeesides
    rdeesides Member Posts: 459
    edited July 2017

    I'm not certain yet, but I think I will be joining this group! I have a meeting with my doctor this week, and I'm hoping I will finally get a treatment plan. I was diagnosed over a month ago, so I'm eager to get the ball rolling, but quite nervous as well. I am really worried about losing my hair, but that is a small price to pay for my health, so I'm just going to forge ahead! I've been thinking about icing my hands and feet and wonder how people manage that? I know some people buy elastogel mittens and socks, but don't quite understand how they manage? Do they buy several pairs and then trade them out during treatment (because they must warm up after a certain amount of time and not remain cold). And if they do buy several, how do they keep them cold as they trade them out? I really don't want to be hairless with black nails. I'm afraid of looking like Uncle Fester. ;-)

    I will keep you posted once I know what my treatment will be!

    I actually just got rid of a bunch of Epsom Salt not that long ago because I wasn't sure what I needed it for! Lol, isn't that how it always works. When I get to that point I will have more questions about the Epsom Salts.

    I am going to check into my the "crainial prosthesis" and see if my insurance will cover.

    Thanks All!

    Rebekah

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    Sorry.... I was trying to include a link and it posted, but I lost the rest of my reply, grrrrr.....

    Let's try again....

    Welcome sweetp6217, teaspoons and Kapisi! Sucks to be dealing with all of this instead of hiking and camping like I planned this summer, but so grateful to be connected with you ladies as I deal with all the uncertainty, worry and potential side effects of chemo!

    Rebamacfan1, I am definitely going to try the epsom salt scrub, thanks for sharing!

    Sweetp6217, my insurance also doesn't cover wigs (they were very explicit in saying they only cover prostheses that are needed for mobility). I'm going to do cold capping so fingers crossed I won't need a wig.... I don't think I care so much if I lose my hair (we'll see how I actually feel when I do start shedding!) but am worried about permanent hair loss on the taxotere. It's somewhere between 6-13% risk, but I'm just not feeling super lucky right now 😕

    Kapisi, we've all been thru that waiting game of finding out there's a concern, waiting for biopsy date, waiting for pathology results, waiting to find

    Oops, didn't mean to post it yet....

    Waiting to find out what's next.... the waiting just drove me crazy! It worked best for me to learn what I needed to be prepared for my ultrasound core biopsy and what kinds of info will be on the path report (great info thru the links on breast cancer.org!), and then plan some fun things to do while I waited. After I researched what I needed, I found I was stewing over the same info and "what ifs", and it did me a world of good to have something special planned for each day before the biopsy and waiting for results - hike with my son, lunch with a friend, start a new book, pamper myself with a manicure, take the dogs to a new park, hit the farmers market and try a new recipe. It made such a difference to have something to look forward to and enjoy like normal, and not be stuck in a worry/fear loop! We're happy to have you join us here😊, and I think there's also an active link in the diagnosis section where you could meet women also going thru testing and waiting on results:

    Topic: Joining you all while waiting for test results

    Keeping all of you in my thoughts as you go thru these busy days of tests, port placements and consultations.... praying everyone gets good results! I have day surgery tomorrow to clean up the posterior margin and they'll place a port at the same time.... because the DCIS and 2 small invasive tumors were so deep towards my chest wall, the dr will shave a little off the muscle covering it to demonstrate that there's no cancer there... she said there shouldn't be based on the MRI, but fingers crossed that's true! Should get the path report back thurs or Friday.... yippee, more waiting! Sounds weird to say, but now that I've done my research on chemo and organized supplies I'll likely need, I just want to get started on it! Sooner started, sooner FINISHED!!!!

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    hi Rebekah/rdeesides, welcome! Have I seen you on the cold capping chain?

    I've seen a couple posts about icing hands and feet - one gal said she wore socks and thin gardening gloves (cotton type I'm guessing), then put feet and hands in large waterproof plastic bags to keep them dry while in ice water tubs. Someone else said they froze water and alcohol in large zip locks (?) and had their hands and feet either between bags or on top of bags. Others have mentioned the gel gloves/booties, but you are right, you would need at least 2 pairs of each so that they stay cold enough. My MOs nurse is calling back with a bunch of info for me, including what they recommend for icing and how long I need to do it (I think it is only while the Meds areinfusing, but I'm not certain). What have you heard so far about it?

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited July 2017

    I'm having my chemo on 21st tomorrow so major part of my chemo will be in August. I got my chemo bag packed with goodies no ice bags yet. I'm still thinking should I need it or not because I still not clear which drug has this side effect.


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  • PauletteK
    PauletteK Member Posts: 2,205
    edited July 2017

    Willow22 - good luck on your report. I totally agreed with you since I found out I have cancer I played the Waiting Game. You forgot one is waiting for insurance approvals.

    Will pray for all the ladies who has cancer

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    hi Paulette! Best wishes for an easy first session tomorrow! I'm having TC - the taxotere can cause peripheral neuropathy but I don't think that is a side effect for cytoxan. I don't know about your meds....

    You are so right about adding the wait for insurance approvals to the waiting game list (and just getting a live support person some days!!!!).

    Happy news - the margins came back clear from the revision Tuesday, with NO cancer cells detected in the sample shaved off the muscle on the chest wall.... whew, that is a relief!!!!!

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  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    Jumping in with some encouragement. You guys can handle this, it's easier than you think, especially Abraxane. Watch for lifting nails and soak them to prevent infection, have Imodium on hand in case you need it, bring some sugarfree candy, in case the taste of the saline flush is gross, drink lots of water and wear comfy clothes.

    And don't worry about looking like uncle fester, I found people are very nice to bald girls, I've even been given free extras (restaurants, repair guys, etc).

    image

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    Thanks for the encouraging words Illimae - it makes such a difference to hear from someone who's gone thru it! What did you soak your hands in to prevent infection?

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  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    Willow, epsom salt is recommended as mentioned above or about 25% vinegar/75% water twice per day for 10 minutes each. I was only told to begin the soaking after my nails started lifting. Best of luck to you all :)

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    thanks illimae! I have so many bits of info in my notebook, but am still feeling overwhelmed with all of this 😔 And not confident that what I'm remembering is for the right reason/SE.

    PauletteK, I hope your first round went smoothly today and you are doing well!


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  • april25
    april25 Member Posts: 772
    edited July 2017

    I had TCHP, so only taxotere in common... That was 2 years ago. I didn't cold-cap or ice (my MO didn't believe in it). All my hair fell out at once after 2/3 weeks... I didn't even have a chance to cut it short! It's all grown back now (thankfully!). I didn't lose any fingernails although they did start to look pretty rough and lifted about 1/2 way after I had finished my cycles (I did use strengthening nail coat all through chemo). I felt no pain. I only got nauseous once or twice. I did get diarrhea, to the point where I had be hospitalized to get saline drips for 2 cycles. Then my taxotere was reduced for the last 4 cycles, but still got diarrhea and had home drips all 4 cycles. UGH. I didn't get dry mouth or sores, but was taking lots of L-Glutamine (pure powder in water), prescribed by my MO. I DID get neuropathy, had to be tested by a neurologist and showed weakness in both legs and a bit in the arms. Weak, but no pain or tingling. Resolved after chemo ended. I had Neulasta shots the day after infusions. I had a port put in for my chemo (also used for the hydration drips and for a year of Herceptin every 3 weeks). Got port removed after Herceptin ended. If you're 50s, maybe get a shingles shot beforehand, in case the stress might bring that on (assuming you had Chicken Pox, anyway).

    Everything tasted like cardboard for the middle weeks of the cycle. I would drop 10-15 lbs each cycle and then eat and gain it back then stop eating again. I could drive and do some things, but the stupid drip bags limited me. By the end I was weak and anemic, so wasn't doing much at all. But quickly gained pretty much everything back after a month or so (when I had my LX, so I wasn't doing much anyway).

    LX was a walk in the park. So was rads. I was really feeling quite normal by then! Still no hair though... It took a good year to grow in to any decent length. I was glad I bought a good wig right before chemo so I was all set! It kept my head warm in the winter! Having a bald head was weird. I don't know how the guys do it... I don't even live where it gets cold, but it felt WAY too cold having no hair. I had a nice collection of scarves and caps, too.

    Some people can work through their chemo, some can't. And it's hard to predict.

    Good luck, everyone!

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited July 2017

    Willow22 - my chemo went well today no pain on my port and the SE I have is tiring and my head feels like in the cloud. I even went for my evening walks.

    Good luck to you many of us are fine 🙏🙏

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  • rdeesides
    rdeesides Member Posts: 459
    edited July 2017

    Willow, I was indeed on the cold capping thread, but I'm most likely not going to go that route. Let me know what you find out, if anything, about icing hands and feet! I haven't heard tons about it but I definitely want to avoid neuropathy

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  • rdeesides
    rdeesides Member Posts: 459
    edited July 2017

    Illimae, I love your sense of humor! I'm totally going to look like Uncle Fester! In fact, maybe I will even be him for Halloween. Lol

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    paulettek, so happy to hear you had a good day!!!!

    Rdeesides, I just ordered the penguin caps thurs, and then found out today my oncotype recurrence score is really high, so they may change my chemo drugs..... grrrrr, the news sucks, and the timing sucks, and I'm feeling really tired of dealing with changes 😠. Throwing myself a little pity party tonight.... but it would be nice if they changed me to a regimen that didn't have the potential for permanent hair loss. In that case, I wouldn't do cold caps either, which would be a huge relief for me.

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  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    rdeesides, fester for Halloween would be awesome! I made myself a cool baldy Bitmoji too :)

    image

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited July 2017

    illimae

    You are so funny, most of us will be at that party.

    Second day on my chemo #1 I need my appetite back I'm not hungry and can't eat much. What would you do to get your appetite

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    april25 - thanks for the info and tips! That's a relief to know the radiation is no big deal after the chemo!

    Illimae - love your style and sense of humor 😄

    PauletteK - my mom had a bad accident and very long recovery to heal a large wound on her leg (down to the bone).... several surgeries, infection, and eventual skin graft. She's in her 80s, and with everything going on, her appetite was poor but her protein and nutrition needs to heal were high. We didn't find anything that really stimulated her appetite, but found that small high nutrition snacks were better than trying to eat a meal. The hospital dietician recommended adding protein powder to easy to eat items like Greek yogurt, cottage cheese, applesauce or pudding (whatever sounds appealing). We've bought Natures Way Isopure whey protein isolate (unflavored) at super supplements and both my mom and dad still use it daily even tho she has healed from the accident. 25grams of protein per scoop, and it mixes well with just a tiny flavor change. They haven't tried it in warm things like soup or mashed potatoes, but I think that would work too. Stuff from my MO said I should try for 80grams of protein per day during chemo, so I'm going to mix it with Greek yogurt and fresh fruit, then freeze it in popsicle forms to nibble on (cold things are better for me if my stomach isn't feeling quite right). Hope your appetite is back to normal soon!

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    image

    Oops, it is made by "natures best" although I think I cut the label off on the top...

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  • PauletteK
    PauletteK Member Posts: 2,205
    edited July 2017

    willow22 - thank you for the info I will try my ensure milk shake. I got many bottle of these ensure so that should help out.


    Thank you so much!!!

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  • Willow22
    Willow22 Member Posts: 220
    edited July 2017

    has anyone used a nail strengthener or fortifier that you brush on to prevent peeling/splitting nails? Mine have been doing that this year even before the BC stuff, so they'll likely be terrible with chemo.... all the ones I saw at target have heavy duty chemicals that I'd rather not put on my nails.... are there healthier options?


    Also, for folks thatve had a port placed, is it right under your bra strap? Mine was put in tues 7/18, so I'm hoping it'll be more comfortable down the road, but right now the strap goes right over the bump of the port even if I wear a racer back or halter bra. I'm padding with some soft flannel folded under it, and will look for a bra with soft wide straps... any other suggestions? Wish I had thought to ask where it'd be placed pre-op in case there was some leeway...

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  • rdeesides
    rdeesides Member Posts: 459
    edited July 2017

    Willow - oh no! it seems like everything is a curve ball with this dumb cancer. Sorry to hear they changed your chemo regimen at the last minute. Is there really a chemo that doesnt make you lose your hair? Sign me up! I'm pretty sure I won't be lucky enough to get that one.

    PauletteK - I see you are in California. Have you thought about medical marijuana? I have a friend whose father had cancer and they swear it saved his life. I personally wouldnt know how to get it, but it's a thought. I thin Ensure will do the trick though if you want to have something that is easy.

    Illimae - I love Bitmojis. I will have to make a bald one. Also I will probably steal your Uncle Fester meme idea once I lose my hair and send it to some of my girlfriends. We all need a laugh.

    Thanks All, I will be thinking of you and hope your treatments are going well. Will check in Monday after I know my chemo plan!

    Rebekah

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