Chemo starting November 2018
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Hello duncmelsmom and welcome to our group! I am grateful you have support from friends and family, it makes this easier to endure for sure! Hope you get your port in so you can begin - that was exactly how I felt, let's get this train down the tracks!
Hazel-Nut - for Pete's sake, you sure have these little problems, losing your marker through your skin, oh dear! I have to tell you, after they placed 3 markers in me, they sent me for the mammogram to see them, and only saw two. So, they made me come and lie back down and do it again! She said that had never happened. I wonder if what you experienced has ever happened! I'm sorry, honey, that's just awful!
I struggled this weekend with Neulasta and ended up just taking a pain pill (hydrocodone) they gave me for my port placement just so I could sleep at night. Things are better today, I think, still fighting a little diarrhea and a rash, for which doctor has told me to take Benadryl 25 mg every 6 hours and hydrocortisone 1% cream twice a day. I was putting lotion on it and they said not to do that. Hang in there everyone - it is snowing in Missouri today and is quite peaceful looking through my workplace window.
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I found this today: https://cancerplanners.com/ten-tips-for-surviving-...
How to Survive Chemo | Recovery after Chemotherapy
Even though it's been over a year since my last chemotherapy treatment, I can STILL feel the effects it had on my body. It made such an impact on my life. I know there are others out there looking for helpful hints to make it through their chemo treatments so, I'm sharing what I learned from my experience.
First of all, chemo is a drag. It's hard but know that you can do it. You will make it through.
There are things you can do to minimize the side-effects and to make yourself more comfortable.
Here are my suggestions for how to survive chemo:
- Drink LOTS of liquids. More than you think your body can deal with. This will help flush the toxins out of your system faster and therefore make you feel better faster. I had a hard time drinking water after a while, so I added other clear liquids such as broth, popsicles, gelatin, fruit juice, ginger ale (this was a lifesaver! In fact, Schwinns gave me a free case after I wrote to them about how awesome their ginger ale had been.)
- Eat bland food. You may not want to eat, but getting food into your system can make all the difference. Try bland, mushy foods such as oatmeal, pudding, white potatoes (mashed), yogurt and white bread. The first few days after chemo, it's not recommended to eat any fruit.
- Find an outlet. I found that journaling helped me cope with the pain and fear I was experiencing. It was so healing to get my emotions out of my system and onto paper. I journaled in my Ready for Recovery planner and through an online blog that kept family members up-to-date on my progress.
- Dress comfortably. I really had a hard time resigning myself to the fact that I was in treatment. In the beginning, I would get all dolled up (I refuse to look like a "patient"!) and head on over to the Infusion Room. After a while, I realized how ridiculous I was being. What's more important is getting THROUGH treatment. Dress comfortably, bring a blanket (those rooms are cold), warm fuzzy socks are nice.
- Track your experience. This is very important. WHY? Because you'll forget. If you haven't heard of "chemo fog" let me tell you it exist. In fact, I'm a year out and STILL have it! Documenting all the drugs you're taking, your doctors appointments, your side effects AS you have them will better prepare you for your next treatment and will help your caregivers make you more comfortable. This is another place where my Ready for Recovery planner was a lifesaver!
- Exercise. You will not want to. You will hate your husband for telling you "it's good for you, do it!" you will curse the ground he walks on, but … it HELPS! Just do it! Walk for 15 -20 minutes a day, if that's all you can do. This gets your blood pumping, and the toxins out. Other patients I've talked to have had a great response to yoga during treatment, as well.
I think this was wedding number one. Yes, that is a wig. And, yes, I was having that much fun.Have fun. Ok, this sounds ridiculous doesn't it? I'm a cancer patient and I will have fun, dammit! Let me explain. Last summer, I had six chemo treatments. Last summer, I also had five close friends get married. Yes. FIVE weddings to go to! I was bald, I was tired, I felt like I could die … but I could not miss the wedding of my brother and my four other close friends. So, I resigned myself to the fact that I was NOT going to miss them. I bought five fun wigs (pink, purple, white, blonde, brown – all varying lengths and styles). I downed a few ginger ales, grabbed my dancing shoes and went to every single wedding. And, do you know what, I had a blast! I forgot about being a cancer patient and all the guests assumed I was the "fun" chick in the wigs.- Take your meds. They WORK! I also supplemented the doctor prescribed meds with medical marijuana. This may be controversial, but some days this was the ONLY thing that worked. It reduced the nausea and helped me to eat.
- Avoid strong odors. It reminded me of being pregnant. Strong smells (and tastes) would make me feel even more nauseous. I also had a strange reaction to the saline flush they use before injecting chemo, I could taste it in my mouth. I found out (late in the process) that they actually do offer an alternative. Ask for this if you're finding the saline flush taste to be unpleasant; this only happens to about 20% of patients. (UGH! Even writing this makes that taste come in my mouth. Yuck!)
- Be gentle with yourself! As I said earlier, you will survive this. It will be hard… the hardest thing you'll ever do, but you will survive. Be gentle with yourself and take the time you need to heal. SLEEP. Write. Survive. You can do it! And, if you need support, please don't hesitate to contact us
I wonder where we can get some cute wigs that are pretty colors (like pink?) - Lisa
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Hello All!
I just got back from the oncologist and he is scheduling me for chemo on November 27. Set to complete 4 sessions of AC every three weeks and then 12 weekly sessions of Taxol. Any recommendations of how to prepare and stuff to have would be greatly appreciated! Hope everyone is doing well so far
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MissouriCatLady you would have seen me on the news if they had even tried to tell me I needed to go back and have another marker placed. No way. My BS said he was aware that the marker ended up in a less than ideal location and that it's just as well that it is out.
Bookworm14 welcome to the group. The main community page has a link to the forum that recommends items that might be helpful starting chemo. I had most of the OTC meds and things in my house already, I got a Rubbermaid container and consolidated them in one place and put it on my nightstand for easier access. My husband is the type that if I asked him to go get me a throat lozenge I'd have to first describe in exact detail where to find it so it's easier for my sanity if I just have to say "night stand". Luckily my kids are old enough that I don't have to worry about them playing with any of the meds and I feel comfortable leaving them out.
I have to get through my axilla ultrasound tomorrow and hope beyond all hope that they don't think it needs another biopsy. If I took my shirt off right now you'd think I was being abused with all the bruises and scabs all over my chest and breasts. I sincerely don't want yet another needle jabbing into my soft jiggly bits just to yank out yet more of me to send to a lab. Like one of the earlier posters said - I'm being sampled like a box of chocolates! I'm really pleased with how well I'm doing with the port. It barely hurts and I don't have too much restriction to my range of motion. It has that annoying itch you get when you're healing but every time I touch near it I get a zing of pain that reminds me not to scratch.
My biopsy results last week showed apocrine metaplasia in the left breast and sclerosing adenosis in the right. I'll be interested to see what the breast surgeon recommends as far as surgical options with this additional info. Both results are benign luckily but I'm not sure how I feel about the wait and see approach on these. I'm proving to have pretty abominable luck these days lol!
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MissouriCatLady - I wanted to add that I grew up in Missouri, moved away when I was 18 and have only been back once since. Your post makes me a little nostalgic. It almost always snowed a little on Halloween night when I was a kid. I joke with my boys when they complain about having to wear light jackets under their Halloween costumes that we more than once had to trick or treat in sleet, freezing rain or snow when I was a kid. The one thing I truly miss about Missouri is the weather (well...maybe not tornado season lol). Maryland weather is so bland in comparison. I haven't seen a really, really good lightening storm in about 15 years. I hope your snow this week is beautiful and not too inconveniencing. We have lots of rain and cold here right now. I think at this point I'd rather it just snowed.
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Hazel-nut,
Sooo understand with the husband thing! I may have to look into putting everything in one spot! Thanks for recommending that page. Does the port cause a bunch of problems? I just hadn’t my dble Mx with TEs on the 15th so worried about any issues with that
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Bookworm - I won't have surgery until after chemo so I can't say how it feels with the TEs but all in all I thought it would be way worse than it is. My biggest problem is that the dermabond they used on the incisions rubs funny on the collars of my shirts so I've been wearing v-neck stuff and getting funny looks at work. I don't really care about the looks but I can tell how hard it is for my coworkers to keep themselves from asking about it. I'm so happy I pushed for this port though. My MO doesn't use them for her patients and I really had to put my foot down. I haven't even started chemo and the process leading up to it has left me feeling like a pin cushion and my arms hurt so bad last week after all the IVs and needle sticks that I have absolutely zero second thoughts.
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Just a snowy tree I took at work yesterday. Our 20-something son lives in Oregon, and asked for a photo. It is nice to know you used to live in Missouri, Hazel-Nut, and you moved away like our Oregonian. There is not a lot here, I guess, but I can't do well on big freeways with five lanes, so I don't mind a whole lot. The thunderstorms are nice to watch without the tornadoes for sure, and our trees have been pretty this year. I've always wondered what the east coast looked like, I bet it is pretty up there! Hazel-Nut, is that dermabond on this port, gluey stuff? It sure takes a long time to go away!! I have this rash, but they gave me hydrocortisone yesterday and it is not as red today or itchy. They told me to take Benadryl every 6 hours and not drive, hahaha, I have to drive to work, so I will take that at night and maybe it will help me sleep. I've been getting cramps in my feet at night and have to get up and walk around, I think that is a little bit of that Neulasta shot maybe. Does everyone get that Neulasta shot?
Sending you best wishes with your ultrasound today. And good for you for getting a port. A co-worker told me there is a cream you can apply to your port that numbs it so that when they put the needle in you don't feel it, you might ask your doctor if you're interested (I got some of it). Hopefully, you will get past that box of chocolates stage soon.
LizzieBo and Mdoc - how are you all feeling? I hope you are doing well.
Casual Book Nerd - you are in my thoughts and prayers today.
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Has anyone with Triple Negative who had stage II with no lymph node involvement gone for the "hard Stuff" when it comes to chemo just to be sure? Medical Oncologist said that cancer that has traveled to other parts of the body cannot even be seen on scans until it's about dime size. Nodes show clear on scans but no way to know if there are any cells in them without biopsy and nodes that are not swollen are too small to biopsy. I am having chemo before surgery.
I had my first meeting with my medical oncologist yesterday. I most likely will start chemo next week. I had all my scans this last Friday and they were all clear yay! I didn't realize that I would have a decision on what chemo regimen to do ugh! My stage is II but he said due to size of my tumor and that the lymph nodes show clear I am right on the line of Stage I and Stage II.
My Options are:
1. Adriamycin plus + Cytoxan given every 2 weeks for 4 cycles (given 4 times). After 2-3 weeks, Taxol is given every week for 12 weeks.
2. Taxotere + Cytoxan given every 3 weeks for 4-6 cycles
3. This one is a co-clinical trial. Neoadjuvant docetaxel + Carboplatin every 3 weeks X 6 cycles.
#1 is the most dose-dense hardest one. That is the one I'm leaning towards but darn it it's hard for me to say yeah hit me with that. I guess it's only 6 months not forever so I can do this. Yep I can do this. At least that's what I keep telling myself.
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Susan, I wish I could answer your questions. I know the triple positive group has a lot of advice on there, not just for triple positive, and is very active: https://community.breastcancer.org/forum/80/topics...
I just came back to let you all know my doctor suggested I try magnesium supplements for my nightly lower extremity/foot cramps. I googled magnesium chemo and found this: Prevalence of Magnesium Deficiency With Platinum-based Chemotherapy. Increasing evidence points to routine depletion of Mg by PBC. I'm on carboplatin - so magnesium is going to be purchased today! Here is to a good night's sleep. And Susan05, you CAN do this - you are not alone. Hugs to you.
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The lymph node US looks normal! I was so happy about that I could have hugged the radiologist! So now I'm good to go to start chemo tomorrow.
Susan - my chemo cocktail was the only option given. I was kinda surprised that I didn't get a few options to choose from but TN metaplastic cancers don't really have a lot of options to begin with so I don't know why I thought I would have to make more decisions. I'm doing dose dense AC x4 and then weekly taxol x12. You'll see a lot of folks on this site receiving AC+T.
MOcatlady - yes, the dermabond is the superglue stuff. Even as it seems like mine is flaking off there's another layer of it underneath still stuck to the skin! I wonder if they would market this to the general public so I can use it to attach my kids gloves to their hands in the winter so we can stop losing them. This stuff sticks lol
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Woo woo woo Hazel-Nut! Yay! I am toasting you with my bottle of water, my friend! The train is leaving the station and we will be thinking of you tomorrow. Many hugs and blessings to you! Lisa
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Wooo hooo Hazel-Nut! Great news that US looks normal! You'll have to let me know how your first week of chemo goes, I most likely start next week.
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Just got back from physical therapy. I haven't had any issues w the port itself, but the line leading up my neck has felt super tight so PT for the neck and shoulders along with range of motion stuff for me. Same PT that I go to for lymphedema education / prevention is happy working on all my parts. I don't know if it was the tissue glue they used or the combo adhesive left over from the steristrips and the glue but yeah - this stuff is like concrete. The MO nurses said GooGone would take care of it - mmm, pass, I'll be stuck for a while longer. It doesn't do anything except look a little weird (I try to clean off the dog fur from the stickies before going out).
I'm not sure that everyone gets the Neulasta shot(s) or not. I was told it was only going to be during the A/C portion of my chemo. Blood work for me on Thursday coming up. There is a cream that could be used on the port to numb before hand, Emla? Basically some lidocaine / benzocaine mixture. My MO nurses have Gerbauers Ethyl Chloride spray to numb so I didn't get the cream filled. The spray worked great. On several previous threads, the ladies had mentioned Vagisil cream (apparently it has lidocaine in it??) worked as an non-rx alternative to numb the port before any procedure. I would just check w the nurses before using anything they don't have on hand.
The triple negative forum has all sorts of ladies who have been thru similar experiences. I would def check those out - Susan05. You may be able to get more info from their exchanges on the very personal decision on what chemo regimen to do. We're all so different and in different places in our lives, with different types of cancers and stages, everyone is going to have an opinion... Your first option is basically my regimen except I had 3 surgeries first....
I hope this helps. I must have started writing this 3 different times over today. I am having a major case of I just cannot concentrate well....
Edited - congrats to HZ on the clear US nodes!
Edited again - adding, my husband has restless leg syndrome, nerve damage and some leg cramping at night - the magnesium really helps. Just make sure to add this then into the list of meds / supplements for all your docs. They actually had me stop taking the pre-natal I was on (long story) for during chemo.
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MaddieBrie - THANK YOU! I'll look for the name of that cream tonight, seems like it is lidocaine? Sounds like you've got something that works though with Vagisil cream, save the money for the prescription. I wanted to share this "oldie but goodie" on preparing for chemo: https://community.breastcancer.org/forum/69/topics...
Thanks for the tips on magnesium. I thought I'd have a bowl of mashed potatoes and gravy from the cafeteria today and I paid for it with several trips to the ladies room. Nothing like diarrhea at your workplace. Hugs everyone!
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I start chemo on 11.27. Four cycles three weeks apart......
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Bookworm14 - Looks like we'll be chemo buddies!
How are you doing with your TE? Mine are awful right now. SORE, SORE, SORE! I have air expanders, and I expand at home. Supposed to be doing 30 cc per day. I'm doing 10 cc every other or every third day. My thought is, I can't have exchange surgery until after chemo is done, so what's the rush?
I'm hoping that some of the soreness settles in and goes away once my body realizes these things are here to stay for a while........
Hope you are having a good day!
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JennieKeaton,
Glad to have someone starting the same time as me! My TEs are also air expanded, but I have to go into my PS for expansion. He wanted to give me a break for two weeks before expanding again. I do wish they would have given me the option to do it at home like you instead of having to drive. What did you think about the first expansion?
Completely understand about not rushing...we have weeks of treatment coming up! Still a bit sore around the edges of the TEs especially towards a he inside to underarm area. Would love to have that disappear soon since I cannot put my arms down all the way! Wishing us the best and little Side effects! Have a great day!
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I had my first infusion today - I'm scheduled for weekly Taxol for 12 weeks + herceptin. I was extremely anxious going in, but other than the nurse having a bit of challenge doing a blood draw from my port at the start - mine is on the side of my breast rather than my chest and that seemed to throw her off a bit - but it worked fine once the infusion started. I felt like I was there forever, but it really it wasn't as bad as I feared. Of course, none of the SEs have hit yet... I have been drinking lots of water and did some light exercise since I'm a little wired from the steroids. I'm planning to go to work tomorrow and will be taking a wait and see attitude about the rest of the week.
MissouriCat - thank you for posting the lovely photo and for the helpful link. And good luck to all of you!
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My scans were completed yesterday, and my oncologist called to say that the bone scan had a spot of concern on my T9 vertebrae. The chemo which was supposed to start Thurs was postponed due to another biopsy for this. There was some "miscommunication" in the office about getting a port. I have a pre-surgery appt on Friday with the port going in the week after next.
As a friend keeps telling me, write everything in pencil. Procedures, treatments and appointments change daily. Chemo is now to start Mon the 26th. I have a second opinion scheduled for Tues Nov 27 at Emory University Hospital. I am not doubting my doctors, I just have this covered with insurance and think that I might as well do it!0 -
MissouriCatLady - it may not have been the mashed potatoes but just the gravy part that upset your stomach today! Whoops! I haven't tried any of the Vagisil stuff since my MO nurses had the Gerbauers spray stuff. I was just passing it along for those who may need another option more affordable than the Rx cream in case their nurses don't have something available.
TE inflation/expansion at home? Brave ladies..... My husband watched the process of removing all the air and then the saline expansion at the plastic surgeons office and said it looked 'cool'. Mmmm. My first felt weird. Second, weird and the third will probably feel weird too. The TEs being expanded on a more or less regular basis is to try and help w the elasticity of the skin and muscle in prep for the final exchange procedures. With all the other weird side effects w/ surgery, chemo, medicines, hormone chgs and rads, getting 'stretched' for the TE in my book = pretty minor. I have def noticed some skin changes texture, moisture and elasticity since recovering from the lymph node dissection. The hydrate thingy for chemo and slathering on moisturizer (ugh - adds at least 45 min to the morning routine) have certainly helped in these areas. Some of the swelling I thought was just post surgery swelling initially after the mx in Aug was actually the corners of the expander... I think they make them (TEs) so uncomfortable that were just relieved to get them out of our bodies at the exchange surgery and feel all flowers and shtick.
Bookworm/Jennie/CasualBookNerd - welcome.
Duncmelsmom - I pray that everything is going to go alright w your biopsy. Once there was a "plan" in place, they haven't changed that much for me.
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Missouri cat lady, thanks for asking. Doing pretty good now. I had my first infusion and a pretty rough third and fourth day but today I got my brain back. No bone pain from the nuelasta but I take Claritin everyday anyway. However I take the Claritin for migraines and the last two days were one pounding blurr. Bu I think I may be able to adjust my regular migraine meds so that would be good. I have ulcerative colitis so having a bit of GI problems but again I think I can work on that. So I guess the take away is that after having a bit of internal panic about how I might be able to handle this I’m feeling much more positive. However I am a little daunted by how much I’m supposed to be keeping track of and learning and asking about and preparing. So I am taking it one bite size bit at a time. Thank you to all the ladies who are sharing. And have shared. and will share. I am overwhelmingly grateful.
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Have any of you been given the option of 4 rounds of Taxol - every other week, or 12 rounds - weekly? My onc made it sound like it's my choice. It seems like there is less chance for neuropathy on the 12 rounds one, from what I've read on the Internet.
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Jiffs,
My doctor would only talk of the weekly Taxol since I was doing a heavier load on the AC and he thought the lighter doses would help with SE. he did not give me a choice, but I would have preferred to space them out for three weeks only because I have a $300 copayments for every chemo dose until I hit my max out of pocket...would have given me a little space to save up.
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Bookworm, it still blows my mind that you have to pay for treatment. I couldn't imagine going through this with the added stress of the financial burden. Grateful for being Canadian right now.
You doing AC every other week? That's what I'm doing.
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A note about insurance: My job offers insurance through Blue Cross Blue Shield. My copay for 2018 is $3900 and my copay for 2019 is $3900. My deductible is $1200. Our hospital is a Catholic non-profit and every time I have been there for any test/scan, they have called me beforehand with an estimate of my cost and asked me, would you like to take care of that today? It can cause one a great deal of anxiety, but I have chosen not to think about it too much, since I'm already going to owe them over $8000. They offered to send me to the bank to get a loan, but I believe I will attempt to make weekly payments as best as I can. My co-worker's sister had cancer over the summer, and had no insurance, and she ended up paying a total of $2000. I hope our country can get our health insurance a little more within reach of a middle income kind of person, like me. Well, I'm probably not even middle income really. I am just an office clerk. Do not feel overwhelmed by money - (my note to you, and my note to myself). Remember what is important in life.
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this has some good stuff in it, hope you don't mind my sharing: https://www.ihadcancer.com/h3-blog/06-23-2016/21-c...
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Hello ladies, How is everyone? I still don’t have a firm date yet, I expect it’ll be after thanksgiving, I’m still being poked, prodded and scanned. I had my port placement on Monday and chemo education yesterday. I thought they would start me ASAP but I’ve still got a PET scan to go today (second day of fasting this week, I’m starving, lol) and a MUGA scan next Wednesday to check my heart function. This wating iswhat’s the hardest!
My MO is using the PET to stage me, so I don’t even know that. MRI came back with no adenopathy, which is encouraging, I think. My fear is the PET will show I have some other cancer, not Mets.
I need to update my profile, but I’m Er/pr- her2+. 3.5 cm tumor and a 1 cm satellite that was found on the MRI. Chemo will be TCHP. I thank you brave ladies going before me to give me a clue of what’s ahead.
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Missouri Cat - how are you doing? Yes, I’m TCHP too.
I was sent home with one of those “surprise shots” aka Neulasta. I was thinking I would feel it when the medicine released. Nope, not a thing. That’s gizmo did stress me out though. I think it was mostly the fear of the unknown. Honestly the worst part was getting it off!
That is some serious adhesive. Two days after the shot I understood what the doctors meant by bone pain. Today was the first morning I woke up without noticeable aches or pains. I would love for that to continue! Anybody else experiencing teenage acne? Not a fan. The other fun experience the day of chemo and the day after - hot flashes!! I had to apologize to my mother and every coworker I ever gave a hard time to about the sudden need to rip off clothing. Oh my word! I had no idea. I’m cold natured so my Mom is getting a kick out of this new development. Have to find the humor, right?
I’m drinking lots of water. Thanks everyone for the water alternatives because water is not my favorite beverage.
To all of those sporting a new port - it gets better. Hang in there. I looked like I was put back together with purple glue stick and it was tender for the longest time. I don’t feel it much at all (it’s been with me for 2 weeks now). It really does make the infusions and giving blood so much easier. Also - when chemo starts and the nice nurses flush the port - THAT’S when you need to have the Lemmonheads or something along those linesready. It is not the most pleasant smell or taste.
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First round of AC is done and dusted. Guess who had a reaction to the adriamycin as the nurse was pushing it in? That's right - this gal. I got this terrible rash across my chest and neck and she started calling for additional nurses and went and got an anaphalaxis kit and everything. It was highly dramatic. And then she did a quick IV push of benadryl and you wouldn't think it would have such an effect but it was like getting hit with a sledgehammer - I became instantly nauseous and got a headache. They had to stop my infusion for an hour, monitor me and then came back and finished the red stuff and bam, the same reaction again. More nurses, more drama, more benadryl, more steroids, more waiting and watching before we could move on to the cytoxan which I actually slept through lol. The reaction was pretty mild - just the rash, a very tiny bit of itching, and a weird pressure feeling in my chest that went away when they gave me more steroids. I am super wired from all the steroids now and also super foggy from all of the benadryl.
All in all it was a crazy long day but not too bad. I'm going to lay on the couch now and stare off into space until the drugs wear off enough to let me sleep.
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