Who is starting chemo in September 2016?
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Bagsharon-that's awesome! As I was sitting in chemo today, my coworker sent me a picture of some ribbons she had made for me along with pictures of each of my co-workers wearing them. Their support means so much to me, but that completely caught me by surprise. I'm so glad that you have that love and support, too! The wig looks fabulous!
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Very cool, Sharon!
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LOVE your hair Sharon! You look adorable. Wish my wig looked as good
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Had third AC treatment on Wednesday. Worked a full day yesterday and felt ok but tired. Staying home today as it has been my feel bad day the last two cycles. Not too bad yet. Nurse warned that the third treatment is harder for some women. Blood counts have been good and still getting Neulasta after each treatment.
For the financially curious, I did an analysis of my cancer costs. The following values are rounded and include the amount the medical providers actually received/will receive, between insurance payout and my payments. Billed amounts are much higher.
Initial exams, imaging/scans, biopsies, pathology, etc. Essentially everything before surgery: $15K
Everything related to surgery: $15K
Chemo (total projected for 8 cycles): $18K (doesn't include Neulasta)
Neulasta: $50K
Radiation: TBD
Tamoxifen/AI: TBD
I'm stunned that the Neulasta alone costs more than all testing, imaging, surgery, and chemo treatments combined!
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OMG, you guys! I have to tell you that I found that wig on Paula Young's website and it was only 25 bucks! At that price, I took the risk and I'm glad I did. I've been getting compliments from everybody and if feels more like me than the one I got from American Cancer Society which would have cost around $140!
Sorry about all the exclamation points, it must be the steroids.
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Boy, was I wrong about the hair loss day. Day 15/16: I had a date last night with my boyfriend. When he first asked me, I still had plenty of hair. Then last night while I was getting ready, I couldn't even fix it because it shed every time I touched it, so I ended up wearing my wig out for the first time. My boyfriend told me I looked great. He has been so understanding. After I took off the wig, my scalp was dry and itchy, and more hair came out. So I went to the bathroom and cut it off to my ears. I couldn't believe how good it looked and was excited about wearing it that way today. This is a hairstyle I would not have chosen because I love(d) my long hair, but now I think I will do this when it starts growing back. So I washed it this morning, and it turned into a tangled mess, so I wore the wig to work. My high school students gave me funny looks. The comments I got were "You look different," "Did you get a new hairdo?" and "Can I ask you something personal?" I decided a month ago to open up and tell my students what was going on because I wasn't sure what to expect, and I didn't want to have to explain later while I was going through chemo. They have been very sweet and understanding, too.
The first pic below is Day 14 when I just thought I had lost a lot of hair. Then about 3:00 am Day 15/16, I cut it off (bottom pic).
BagSharon - You look awesome. How sweet of your friends.
Lynn - Are you taking Claritin? That really helped me with the bone pain. I plan to start taking it earlier before the next treatment.
NotTheBoss - Prayer definitely helps. I would be in a mess if it weren't for my faith.
Back to my earlier subject, are any of you single and dating through this journey? Or am I the only crazy person in this forum? Immediately after my diagnosis, I decided I was going to keep on living and enjoy every day that I can. Surprisingly, dating has been great so far. My boyfriend has been very supportive. I would like to hear other's stories if you are willing to share.
Have a great day, girls, and keep those great attitudes!
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i guess i am feeling chemo-sobby, I feel left out of everything, even our conversations.
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Hugs to you, MFalabella. Have you tried journaling? That has helped me in the past.
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It's really cute!! I got one from tlc direct for about 54 and im pretty impressed it's really nice. I will be shaving my head by next weekend so I'll get to see how it really looks.
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I started my Claritin this morning. What other over the counter meds are you taking with the Neulasta? I had the neulasta injector and it went off this morning and leaked so I had to take it off and now driving for an hour to get the shot. Oh well at least I'm still feeling great.
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GonnaBePoz-You are so brave to post those pics. I have been contemplating it, but I just can't yet. You're beautiful. I could not imagine dating while going through all of this, I don't know how you do it. Quite honestly, I couldn't imagine dating at all as I will be married for 22 years this December.
MFAlabella-Trying to keep up with all the posts in this thread is hard, but you're one of us and always will be.
SE update for round two-Day one-just very shaky feeling and tired. Met my gallon of fluid goal. Didn't sleep well. I think my MO increased my steroids and didn't tell me, I was wired! Day two- so far so good-hydrating and eating, shakiness gone. Nuelasta should inject around 3:30. I will share a pic of my hair before and when I cut it, but I can't show what it looks like now. I may do a "now" I just don't know yet.
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ok here goes. I'm hoping this helps me come to terms with my hair loss and helps some of you as well.
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Leydi- Thanks for the update on AC #3. I have mine next week and am very scared as I have had several people say this one is a killer. Please post how you're feeling in the next few days. Although I have had no nausea, mouth sores, or any of the other things that go along with it, for round 2, I hit the wall on day 5 and 6. I have never been so tired in all my life. It was to the point that I couldn't do anything. Just sit or sleep. I can't imagine it getting worse than that so I'd be interested to know your experience. Oh, then last night the post steroid meltdown happened again, same as last time, on day 7 after infusion.
ACS74 and to everyone else who has posted their hair pictures. You are so brave to do so! I will never be able to do that. I am totally humiliated by the condition of my hair at the moment I took a picture of the top of my head this morning and was shocked to see how thin it has become. I realized today that almost everyone is taller than me and they can look right down on my sad head. How embarrassing is that? But what is strange, is today is day 22 from first infusion. I'd say I have about half of my hair yet. Does that sound strange being this far out?
Sending best wishes for a great weekend ahead to all!
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Lynn the other over the counter is motrin to help with pain from nuelasta.
Seq-I'm on day 23 from first infusion. My MO said my cocktail is the worst for hair loss. I know of people who kept a good portion of their hair on your cocktail. Posting wasn't really brave, I felt I had to to fully accept it, but thank you. It has certainly been the worst SE. I just try to keep reminding myself that this too shall pass and in the grand scheme of things it doesn't matter. My hair is not what makes me who I am. That said it doesn't make looking in the mirror any easier. Trying to stay positive. It's a struggle.
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ACS74, if it is any consolation, I started TC the same day as you and this is how my hair loss looks.
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Lynn -- I've been taking Extra-Strength Tylenol for the pain, but I had some Hydrocodone left over from my surgery that I took, as well as a prescription of Tylenol 3 with Codene.
Seq -- I'm jealous. Maybe you won't lose all your hair. I don't think I'm brave enough to take a pic of what mine looks like today.
ACS -- You look great. Thanks for the update on the SE's for round 2.
BagSharon -- I think you look beautiful. I would love to have your eyes.
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ACS74--thanks for the reply. I had not heard that before about a certain cocktail being worse than others for hair loss. I thought that came with most drugs we all have to have for this. I have Adrimyacin/Cyotoxan for 4 infusions. Have 2 more to go. Nothing was ever said to me that total hair loss might not occur on the AC. I was told though that it would start growing back while on Taxol. This is an interesting topic. I still think you are very brave to post photos, as are all of the ladies on this board who have done so. Wish I had the confidence. Even with half of my hair still intact at the moment I am absolutely humiliated by the looks of myself. My biggest hope is that none of us would be having to go through this!
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Bagsharon my hair, or lack there of, looks exactly like yours. Love your wig and your co-workers. My co workers all got a bracelet with a pink ribbon and some other trinkets on it and a W for Wendy. They got one for me too.
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seq24 - Don't fear AC #3 if you have had minimal SE so far. Today was the best Friday after chemo so far and this is usually when I feel my worst (day 3). I've taken no nausea or pain meds this time. Needing stool softeners and probably a dose of Miralax as has been my usual.
It is good that I felt OK today as my teen girls went out shopping after classes today and blew out a tire. I had to go rescue them and get the car to a shop.
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Sharon-thank you for that. You inspired me to post in the first place. Each day is getting easier, but I still have my low moments. I did have VERY thick hair so I think that has saved me. It is getting thinner each day. I think at this point I'm ready for the shedding to just be done.
Lynn-next round take your claritin a little sooner, it does help to have it in your system for a few days before injection. Sorry to hear of your pod problems.I second Gonnabepoz on the hydrocodone, it is a lifesaver when that pain kicks in. For me, ibuprofen didn't touch the pain.
Ware-it seems like we all have some pretty awesome co-workers. We can't do T-shirts, because we have to dress business professional, but the ribbons they got made me cry. I love my work family.
Nuelasta injected-hoping for less pain this time.
Stay strong ladies! Here's to hoping for a minimal SE weekend for all
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Leydi--Thanks! That is reassuring. I also just talked to one of my nurses. She said that everyone varies with the SE of different stages of the process. I am just trying to get my ducks in a row in case I need to take days off work. Have you found that days 5 and 6 are bad days for you?That has been my experience with both infusions. Don't know if it is the chemo or effects of the steroids. It sure is miserable.
Glad your girls are ok! Scary thing to send those teenagers out on their own! I have two girls of my own. One is married and on her own, the other one is in college and lives at home.
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I saw the PA at my MO's office on Tuesday and was talking to her about how I want to do my three surgeries all at once a month after my last chemo infusion (Nov. 3rd) so as to fit them in this year since I have reached my $8K out of pocket and she said well when are we going to do radiation then? What?! That was the first time any of my doctors said anything about needing radiation. When they put my chemo plan together after my oncotype test, it said chemo followed by tamoxifen nothing about radiation. I am so depressed. When I read about radiation on this site, I don't fit any of the criteria. I have an appt with the MO next week to find out what they recommend but I am just losing it over this change. Are most of you getting radiation after your chemo?
On a better note, I am definitely turning the corner on round two's SEs. Much easier this time. The Bentyl is helping the stomach cramps. I have to tell you with what I had read about chemo this has not been as bad as I thought chemo would be. Didn't need any anti-nausea this time around and really didn't need it last time. I'm day 9 of round 2 or day 30 from start of chemo. My hair looks just like Bagsharon's, maybe a little less hair.
I do have a new SE. I hate to tell you about it because I know the SEs are so discouraging for many of you. The pads of my fingers have been hurting/burning/tingling for a while now but last few days they got much worse and last night it felt like I was getting callouses on my finger pads and blisters and they burned and itched and tingled intensely. I couldn't sleep because they bothered me so much. I called the MO today and they said it is Hand and Foot Syndrome caused by chemo. I think its usually the palms and bottom of feet but mine's on my finger pads. I have to take B6, L-Lysine, and put bag balm on them and wear cotton gloves. I have to call them immediately if I actually get blisters or they start peeling. I've read it can delay chemo. Has anyone had that?
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Sorry to be flooding this board today. Just wondering if anyone has had to have dental work done during chemo. I unexpectedly lost part of a filling today. Called my MO and of course she is out of the office today. Talked to the nurse and she said dental work is not allowed during chemo because of risk of infection or bleeding. I really can't wait till chemo is done in late January and take a chance of more serious dental problems. Fixing it will only involve either replacing the filling or possibly a crown since there was a large chip out of the tooth to start with. No root canal or anything that would be more serious. My dentist was also out of the office today so I can't get a hold of anyone till Monday. This is just my luck. Thoughts?
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Leydi, regarding the cost of Neulasta, someone has to pay for the TV ads every five minutes and numerous magazine ads. Is it really necessary to advertise something related to chemotherapy? It's not like someone will want a Neulasta pod to keep up with the Joneses. At least they don't show someone merrily skipping along the beach as they read the side effects. Sigh...
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Michelle, I was just thinking about you last night and had only seen the single post. You were super busy last time I checked on you (a guest from out-of-town, I think?) and I didn't want you to feel pressured to write. You are NOT forgotten! When is your third infusion?
Lyn
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GonnaBePoz--Spoke too soon! I took my hair down tonight and ran a brush through it. Not good. I now have the start of a bald spot at the base of my head. However, I did talk to the nurse at my MO office today and she said that it is possible for some people not to lose all of their hair. I don't think I'm going to be that lucky. Afraid to see what mine will look like tomorrow. I'm with you about posting pictures. I'm not a confident person to start with and I could never share a picture like that. I'm not even sure I'll be able to face my family tomorrow. This is pretty depressing!
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Ladies, I'm feeling frustrated. With my two surgeries, two large seromas and the PICC line, my physical activity, especially lifting, has been limited since mid-July. With finally regaining the use of both arms late last week, I've been trying to tackle tasks from simple vacuuming to cleaning the back shelves of the fridge to grooming my dogs and fear my blasted sacroiliac joint is inflamed or herniated disc irritated again. That likely means another spinal injection. We've had countless delays already so the MO wants to go forward with my chemo on 10/11 and we're hoping I can get the spinal or SI injection 10/13. The pain management specialist's office closes early on Friday so I couldn't talk to them about the urgency & importance of the timing relative to chemo. I may hand deliver a summary of what's going on so my request for help doesn't get buried in Monday morning voice mail.
How did you all feel on Day Three? (I'm counting the infusion as Day One and Neulasta delivery the next day as Day Two.)
After going to the wrong office tower initially, calling for additional directions, having trouble finding a parking spot at the correct building, realizing there was no entrance on the side of the building with the street address and building number, calling again for further clarification and walking half the length of the hospital to the main entrance and back again mere yards from where I started, but inside now, I was frazzled by the time I saw the port placement surgeon. I was seen promptly and he was nice do that was fine. I got to the CVS back in my suburb to have my flu shot and got a call on my cell from the hospital saying they just got orders for an EKG and blood work for Monday's surgery. OMG, I just left there 30 minutes ago and no one mentioned that little tidbit? My echocardiogram from 9/15 and blood work from 9/14 isn't good enough. Rush hour(s) was already starting so I knew driving back to the hospital would be a pain in the butt (and remember my butt / hip already hurt!) so now I have to be there 2 1/2 hours early Monday and hope nothing is disclosed that will delay the port surgery. I hate to sound like Wendy Whiner and my problems pale compared to what some of you have endured so please forgive me for climbing on the Pity Pot for one minute to wail, "Can NOTHING in this #!$@# blasted cancer process be easy?"
Lyn
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The thread has been so active today. Some days when there are only a couple of posts, I think, hope, that y'all are having a good time living life instead of enduring side effects. I used to think that I wouldn't care about my hair. I never had thick mane. Worried more about brows and lashes. Well, darn. My hair is coming out today in huge bunches. I've been wearing it in a pony toil to cover the thinning. It gave the advantage of also not washing the hair often. Howeve, since about 1 inch of my gray roots are out- I look 20yrs older. My friend persuaded me to go to opera today, so I took my 9yr old and got dressed up, did evening make up. Felt good. Until we took a photo inside and I looked at the shot and realized how different (old and unhealthy) I looked. Came home determined to get rid of pony tail and let the hair breathe. Bad idea. The hair is dead and can't breathe. I though the entire pony tail would stay in my hand... Buzz cut tomorrow. Sharon, thanks for the link, ordered a wig with free shipping. You look terrific.
I won't go out bold because my son asked me not too. And also, this is so personal for me, I don't want pity or too much attention.
Why is this hair thing hitting me harder than mastectomy?! I've been busting into sobbing spells when I'm alone.
Sorry. I shouldn't whine. Other than hair, I'm ok. I am thankful for that. Hope for easy time next Tuesday and week with minimal side effects ... Love and peace to all thru the virtual spac
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Ah, darn, Smilethrupain. The mirror is probably right there when you brush your teeth, wash your face morning and night, as you wash your hands after using the rest room. That's a lot of reminders throughout the day compared to how often you might look at your chest. Although my hair hasn't been beautiful for decades, I know I'm still going to have a meltdown when the time comes.
Hugs,
Lyn
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Smilethrupain and VLH--Know that you are not alone in this hair issue. I was awake all night worrying about my hair as I know that today the wig is going to have to come out. I can't bring myself to shave it although that's what my husband wants me to do. I may cut the longer part off around my neck but that's it. This is the most humiliating thing that has ever happened to me. I feel like I have totally lost any dignity I have ever had. Some of these ladies on here are so brave and confident with their new look. I'm afraid I will never be one of them. I'm like you, I would have rather had more extensive surgery than face being bald for the next several months. I'll be crying right along with you. Sending hugs!
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