Who is starting chemo in September 2016?
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My husband picked out pretty clothes for me to wear for a photo shoot (in our yard) today with my wigs. He is truly the best husband ever. He helped me style the wigs too. He wants to help me feel comfortable and confident as I step out into this world as a "new" person. I love him and he has helped me so much through this process. I couldn't do it without him.
Welcome hopefulyogi. I had someone go with me for both infusions. It's helpful for the little things (unplugging my IV so I can go to the bathroom about 600 times). I also felt tired and woozy afterwards so I don't think driving would be good for me.
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Start chemo in 9-23... TCH.. ER-..HER2+... I saw alot.of pixs of ports with one big cut and a smaller one up further.. Not on neck.. But higher.. I dont see that on mine.. Hummm.. Would they put the holes closer?.. Such a list of meds.. I told my husband at least ill lose some weight...NOT.. I didnt know the isued steriods.. Boo hoo.. Best of luck ladies..you're a warrior..
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Penster12-I have heard there are different techniques for putting in a port although I have never seen any pictures. Mine has a very thin not quite 2 inch incision where the actual port is, then about 3-4 inches diagonal from that there is a tiny, not even 1/4" incision that is just below my collar bone where the surgeon told me he threaded the port tube through. I actually didn't even notice the smaller incision for about a week after I had it put in. Best wishes to you! Please post how you're doing!
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Ware that is really sweet. Enjoy the attention and pampering.
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I started chemo TC on 9/14. I've had random side effects that I feel like I should not complain about but feel horrible at times. Yesterday was a headache that felt like sinus pressure and hurt to even chew saltines. Today the reflux burn and pressure is too much. I'm already on a daily medication and popping tums. Anyone have other suggestions? I'm calling the dr in the morning but I'm not sure what else they can give me for it.
Next treatment 10/5 for me.
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Ware--that is so sweet of your husband! If you're comfortable, please post pictures. We'd love to see you. You sound so confident moving forward with this process.
My hair has not started shedding yet but I expect it to this week. Tomorrow is day 11. I am scared, no I am terrified, of having to go through the next several months being bald. If you have a secret of how you're getting through this, please share. I have to face a lot of people on a daily basis and just don't have the confidence to do it. I have 2 beautiful wigs, but am going to be so self conscious wearing them. I feel like I need to go into hibernation.
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Ware, Cute about your husband, I feel the same way about mine. Cartwheels after cartwheels. Blessed.
Taxatere, (geez I can't remember the name of the lady who posted that she posted that she is on this as chemo) Am interested in hearing why you oncologist chose Taxatere. Thanks. Am guessing most are on Taxol? I'm on Abraxane. I'm interested in comparing experience's.
Had a wonderful day today, hope everyone has a good day tomorrow.
Best,
K
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The Big Shed
Ok, I finally had The Big Shed last night, which was Day 19 after first AC and Day 5 after second AC infusion. My hair had been buzzed short (not shaved) about a week after first AC as I braced myself for losing it all. Seems like my shed was a bit delayed compared to most. I wasn't expecting much emotion but it was still. . .I guess disturbing is the best word. . .as I tried to get all the loose hair to release. I hung my head over the toilet and ruffled my hair for several minutes and then took a shower. I still have SOME hair but it is very thin so today will be my first do-rag day as I head to work.
This is going to take some getting used to. . .I don't like the feeling of the cap over the top of my ears but it looks goofy to wear it completely above my ears. I'm blessed with prominent ears, I guess.
I really want to find some cute hats that I can wear indoors and out, if anyone has any suggestions/recommendations. I'm blessed with a man-size head too, so many women's hats do not fit.
Hoping everyone is doing well.
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Dawnk1105 - Yes, please call your MO office as soon as they open today and ask for help with the burning reflux and pressure. Ugh. I don't have much advice. I'm on a different therapy and Tums has been helping my admittedly mild stomach upset. Be sure to eat several small meals and stay in an upright position for at least an hour or two after each one. Even try sleeping propped up to see if that helps. I hope you find relief soon.
seq24 - Like most things, it will seem hard and awkward at first but will soon become the new normal. As stated above, I've gone to work "buzzed" for the last couple weeks but today will be the first day I'm wearing a cover. I have not told anyone in my office building what I'm going through so I actually received a couple innocent compliments on my super short haircut. I know they may feel awkward to see me in my do-rag and finally realize what's what. Oh well. My situation is odd because I don't work directly with any of the people in my office building. My work colleagues are located in another state and some of them know and some don't. I'm upfront with the ones who actually ask questions but don't volunteer the information on my own. I find it intriguing that it is the generally the men who start asking detailed questions! The women accept vague answers.
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thanks for the welcome and your input!❤️ Getting a lil anxiety reading about not only the chemo SE but also the compazine, steroid and neulasta SE! (I'm supposed to be getting the patch)
Sam- your wife looks awesome- very natural! 💁🏻
Michelle- thank you! I have a family wedding to go to on my day 15. Really hoping my hair hangs in there til then! Haven't seen many of these people in years and most peopl still don't know my situation yet as its only 3wks since DX. Good luck to you on #2.
Sharon- so sorry you had to miss your race.😟 Wondering myself how many of the things I am already committed to this fall that I will actually be able to go thru with. Just hate all the unknowns!
Seq24- so sorry you are having such a hard time with depression and the anxiety of the hair loss. Scares me too, but I've had to kind of set my mind in that place that it is coming out sometime soon, no matter when- and there is absolutely nothing I can do about it. It is what it is no matter how much I hate the thought of it. So best to just get myself prepared and attempt to prepare my close friends and loved ones around for what to expect. Let them know how much it bothers you so hopefully they will be super supportive and sensitive to your feelings. ❤️
Ware- what a lucky girl! So sweet of your man!
Leydi- I'm planning on getting a wig for sure, but definitely want to get some hats/scarves to wear also when not at work. I also hate the ears in/ears out thing. Looks weird either way on me- plus I have glasses that need to go behind my ears! Let us know if you find any good options. I'm still searching!
Good luck to everyone receiving their treatment today and peace to those dealing with SEs.
~❤️
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Hopefulyogi- I've been dabbling with essential oils for a bit now too. I'm not sure yet how much it really helps but I truly believe it takes the edge off. I have a diffuser going most nights with various calming oils. Keep lavender with me for when I start getting panicked about whatever- been whipping that out a lot this summer. I made a nausea blend to carry around - lavender, peppermint and lemon. Most citrus should help nausea I've read. I've been using a muscle relaxing blend on my shoulder (maybe port related, maybe tension) of lavender, peppermint and frankincense. That one does help me sleep. Plus carrier oil to the blends! I've been fortunate that my se have not been too bad so far, a lot I've been dealing with many for weeks before that I attribute to the nerves and stress building up to day one. Google specific complaints for EO and get many options- I've only got basic oils so keep looking for blends that have ones I have. Hope that helps.
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Leydi--You are a brave girl!! Thanks for sharing your experience. I know mine is coming, probably by the end of the week. Today is day 11, unless I am delayed like you. No sign of anything coming loose yet though. I'm dreading it so much. I asked my sister today if I could borrow her clippers when the event happens. I will have to do it myself. I can't stand the thought of someone else doing it for me and seeing me like that. I know I will be a bucket of tears. Probably for days. I am trying to maintain a sense of normalcy for the kids I care for so I am going to have to go from my regular hair to a wig with no in between. Both of my wigs look exactly like my hair. One is just a little longer so I can wear it up. I too have a man sized head. I bought a cap without trying it on and you guessed it, it doesn't fit. I got a scarf in the mail from an organization that gives free scarves. It is all sewn together with elastic in the back so it can't be adjusted. It doesn't fit either.
Thank you all for your support. This is definitely the hardest part of all of this. I know its all a part of it and there's nothing that we can do to change it, but I'm an emotional mess because of it.
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Seq- just a thought that maybe worth while to check into. Can your doctor, any of them, put you in contact with a physical support group or person? You shouldn't have to go through any of this on your own. Im guessing that you don't want to let your friends and family "in" but what of someone that has gone through this before and has dealt with these fears? A complete confidential stranger who understands you more than you know. This board is awesome but I think you need a real person to actually hold your hand and share your tears. I can't even imagine your blood pressure ri...
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seq24, I talked to my MO about my emotions running really wild. I try to keep a brave face for family, but most of the time when the dam breaks, it's in a form of me just lashing out at kids to hurry up or pay attention or not fight. Before chemo, I had good days when I would find myself listening to the car radio and even singing to the songs (hadn't done that since diagnosis) but then a few minutes later it would turn into wild sobbing. The MO said I need to take an anti-depressant to level me out. I realized that I've been keeping it SO together that my husband got shocked when I broke down and cried in MO's office discussing chemo and hair loss. He was like, 'it's just hair, it's just temporary, you shouldn't care, why cry in a doc's office??" All this trying to maintain normalcy for kids is backfiring on me. I'm not normal, I am sick, and I am poisoning myself in order to extend my life and not to have to go thru this again. It is a lot. Take one day at a time. Don't worry - you can't help if you worry. Do only things that help you heal or deal better. I could worry about taxotere and the possibility of permanent hair loss. But worrying about it isn't going to prevent it or help it. I've been worrying about the possibility of breast cancer since I was 22, because my mom had BC. I went thru regular check ups, even had a couple of "oh-oh" moments in radiologist office. Has it helped or prevent the BC? no, I'm inclined to think that stressing about it precipitated or triggered it. Call me crazy - got cancer in the same breast as my mom around the same age and had a mastectomy done just like. I don't even have the BRCA genetic mutation. If I could only live without recurrence - she is a 27yr survivor, no chemo, just radiation.
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Thanks everyone. I'm sorry I sound like a broken record about the hair loss. I so appreciate your support and what helps me so much is hearing your stories and how you are dealing with the same exact thing. You are all very brave and true fighters in this battle. I'm hoping I can bring myself to join the ranks soon. I don't know what I would do without all of you. Thank you!
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Hello ladies, sorry for my absence. I took a little break this weekend. Welcome to all the new faces!
Sam-Emily looks amazing, I would never have known that was a wig if you hadn't told me.
Ware- your husband is amazing for doing that for you.
Smile, Lmnecken, Bagsharon-hope you ladies are all doing well with minimal SE.
Sq24-I'm sorry you are struggling with depression. I hope that it gets better for you. Losing hair is the worst of all the SE's in my opinion. The pain is temporary, as is the nausea and D but this is an every time you look in a mirror or go to run your fingers through your hair reminder. We will get through this. It will not be easy, but it will get easier and we will all come out stronger, beautiful, and more confident women.
Mentally gearing up for for round two next Thursday and trying to cook some meals ahead and scrub my house clean. I hope you all have a wonderful day.
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Welcome HopefulYogi! I am thinking about driving myself to round #2 and found like most others that Chemo day and a few days after are fairly "normal". The first one was not a difficult day, but extremely long (almost 7 hours for me) and I was thankful to have my Hubby pick me up at the end of the day. I am lucky though in that my treatments are in the same town and only a few miles away. I think if they were further, I wouldn't even consider it. I also have a port and that went fairly well, with just a bit of soreness and a stiff neck afterwards. No quick movements or trying to reach too much with the arm on that side.
It makes the treatment day much easier, especially if, like me, not only did they prescribe the 6 rounds of chemo of the 4 drugs, but the Herceptin for an entire year. Now, hair loss. My Dr. guaranteed that I was lose my hair, so that day I came home and cut my long locks off to my shoulders. Since then, that is all I have been willing to do. I noticed that it was starting to come out a few strands at a time around Day 13 or so. Now it's coming out in bunches, and although I have the utmost admiration for those that can just own it and shave it all off, I'm just not there yet. I ordered a wig and have an appt for this week to pick it up. If you plan on getting one, you might want to order it sooner as opposed to later. As for now, I am super careful hen I brush it and and mostly keeping it pinned up. I am planning on going hat shopping this week. I knew this would be one of the hardest parts for me and that's proving true so far (at least emotionally). I think my hair represents normalcy to me and although going through treatments, I haven't been overtly public with my diagnosis and have only told a few of my closest friends in town. Once the hair goes, I feel like my diagnosis will no longer belong to me, but others will start to insert themselves, albeit well meaning. I am not fond of being a center of attention or a topic of conversation, so this part is harder to me than fighting the disease in some ways.
The other struggle as I see it is time. Does anyone else find themselves counting days from/to the next treatment? I find it so nerve-wracking!!! Even with all of the other things going on in life, it seems like I am on a separate track, running along the same route, but not at the same speed as the train on the "regular" track. The destination seems sooo far ahead, but I can't make the train go any faster. :-( I have friends/family asking about the holidays and trying to plan and I am like "ahhhh, I have to play that one by ear". Round #1 went well enough, some SE, but definitely nothing tooo much to complain about, but I have no idea what the future treatments will be like! Cumulative fatigue, worse nausea, each time. My Dr says that most of his patients on TCHP only "make it through" 4 rounds of the treatment instead of the prescribed 6 rounds, so I am not quite sure how to take that (as permission or a challenge).
Thank you Everyone for being here! It's pretty incredible to have a group of people that you know are going through the same things that you are. No matter how wonderful and supportive friends and family are, there are parts of the process that are very personal and can only be fully understood by those also going through it.
Be strong and SE free!
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Hi Everyone!
Tomorrow is my turn for my first chemo. I'm torn between dreading it and just wanting to get it over with. The thing I'm most dreading is the metallic taste which I experienced right after surgery. It lasted for 2 weeks and made everything just taste terrible. I was told that I'd probably get it again. Oh yay! Plastic utensils, Here I come! Is anyone else experiencing this as an SE?
Depression - It is very real and part of this process, this journey we are all on together. I found that after my surgery, bi-lateral mastectomy, when my drains were gone, not only did I assume I was "normal" again, but so did my family. In some ways this was helpful and in some ways not so helpful. I am not the same, no matter how strong I appear. Our bubble is about to burst with the onset of my SE's. That may actually help all of us in the end. My PA who gave me my chemo teach class told me, very wisely, that we are all so good at giving help, giving of ourselves...but no good at asking for help. It is truly hard. I had a friend set up a meal train for my family and it is very humbling. Overall, the outpouring of support has really helped offset the depression. Looking for silver linings, using a sense of humor, reaching out to others....I believe they will sustain us through this journey. Best of luck to us all.
I once again want to thank everyone here who has shared their experiences, their helpful hints, their experience. It really helps me feel like I am not alone in this. There are others who are going through what I am and who understand! I'll be putting my chemo bag together today. Will keep everyone posted how I come along.
Have a Blessed Day Everyone!
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Makeiki--sending best wishes for your first chemo treatment tomorrow. Please post how you're doing? What regimen are you getting? This is truly an amazing place of caring and support. I'm sorry you have to be joining us, but you have found a great place. Nothing is too big or too small to post here.
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BeachBabyK you pretty eloquently summed up my concern about hair loss - when diagnosis becomes overly associated with my identity.
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Hey all..just a quick question...til I get to read all I've missed but I am not on neulasta however I feel like this day 4 like I've been run over by a truck...I don't recall anyone without neulasta having bone pain so I'm kind of at a loss..is this normal???
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Lmencken, day 3/4 are my worst too. Steroids have worn off and it's like having a hangover and flu at the same time. Hang in there. I'm on day 5 now (my 2nd round of TC), and I am in the rebound. I had bad heartburn and thrush last time on week 2, so on the lookout for that. Just get lots of rest and drink lot of fluid!
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OMG, I had no idea that a runny nose was a sign of impeding hair loss. That's kind of funny. Here I was, blaming it on my inconsiderate coworkers who can't be bothered to cover their mouths when they cough or sneeze.
lmencken, though it is not a common side effect, Taxotere can cause joint/bone pain.
makeiki3, I think metal mouth is so common that most of us fail to mention it. I have to say, I'm not too unhappy about it. I can afford to lose a few pounds.
I feel kind of guilty that my side effects, other than the half day of bone pain, have been pretty mild. I feel for all of you and wish I could do something other than just send good vibes.
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Bagsharon -it's the inconsiderate coworkers too. Watch out they don't give you a cold with no nose hairs
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another little known fact about hair loss. It is rarely mentioned. If you are finding it hard to hear, it is likely a wax build up in your ear as u have lost the little hairs that move the wax to the outer ear. Flush it out with water not a q-tip. I had to get Dr to flush mine & this was explained to me. Keep up the good work ladies. Hugs to all
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I guess something else to share while on the nose line that I heard this weekend from a recent finisher of AC+t - your (her -everybody is different) sinuses dry out and you have to keep them moisturized "manually". Joy. And sometimes you'll need to have your husband wake you up, force you to eat, so you can go back to sleep. I only mether for ten minutes and these are the things she felt most important to tell. Like I said before, there are survivors hidden every where.
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CC2016, my sinuses are so dry, they're bleeding. I have bottles of saline stashed everywhere. That's why the runny nose was so befuddling to me.
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kechla, if you don't mind me asking, if you had bmx several yrs ago, where was the cancer this time? Did you do the oncotype dx then or this time? Thanks
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I fell asleep sitting at my desk at work today. Oops! I don't think I was out very long but I'm definitely a bit more tired this second cycle. I didn't like wearing the head cover all day and yanked it off once back home. I guess I'll either get used to it or go "nekkid" once the last of the hair falls out. DD16 wants me to get henna tattoos on my bald head.
I wanted to share the following since I couldn't find the information anywhere else when I was looking. I asked the NP at the oncologist office when my lowest WBC would be so that I could be extra careful on those days with venturing in public. I'm on bi-weekly AC treatments and receive Neulasta 27 hours after each chemo treatment. She said that my nadir would be days 7 to 10 and that, while I shouldn't feel like I have to stay home, I should avoid places like Walmart or the grocery store. I'm not sure where she thinks I jet off to but if I'm not heading to work, I'm probably heading to Walmart or the grocery store!
I also asked about the flu shot. My MO office recommends getting the flu shot, even during active treatment. I asked the NP if timing the shot during a particular time of the treatment cycle could help improve my immunity response to it. She didn't think so but recommended that I get the flu shot when I'm feeling my best, probably a few days before a treatment.
Anyone else trying to gain/maintain weight during treatment? I worked so hard over the last couple of years to get my weight down into the healthy range and now I'm more worried about dropping too low. I've been down 1 to 3 pounds at each MO visit so far. Don't want to keep dropping.
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Good Evening!
Saq24- I'm taking TCH (Taxotere, Carboplatin plus Herceptin) for my chemo cocktail. Have to have 6 sessions, 3 weeks apart.
Leydi- I,too, am hoping to have henna put on my head by my daughters. I think it would look so cool, and since it's vegetable based it shouldn't pose any problems. I just think the henna mehndi would just look fun. It only lasts a couple of weeks, depending on how often we wash our canvas! Also, I had the flu shot last week. My onco recommended it sometime inbetween the chemo treatments when we are feeling strongest. I just wanted to get mine out of the way. Having all 3 of my kids and hubby get it to for the first time this year in a long time.
Bagsharon- I guess you are right about the metallic taste. It is just a common SE, and we all just put up with it given all the other possible SE's. We shall just deal:)
Guess I have lack of nose hairs to watch out for too. It's too funny as the list just goes on and on and does the meds to deal with them all. Could be overwhelming, but right now I just find it funny. We shall see how I feel in 3 days, after the steroids wear off.That's it for now. Best wishes everyone. Also, cannot figure out how to put my chemo/radiation/hormone therapies on my bio. I'll figure it out another time.
PEACE!
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