Who is starting chemo in September 2016?
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Seq24, should we have warned you to avoid cartwheels and handstands after port placement?
But, seriously, I feel bad that you and Nayda had this added stressor with the flip flopping ports. Ugh!Sorry that I fell off the planet. My Kindle Fire periodically removes topics from my Favorites & I finally thought, "Gosh, I'm surprised that no one has posted an update on their chemo" and realized what happened. I was glad to read those reports about things going well so far and offer support to those who are struggling.
As for me, this has been a challenging week. I saw the surgeon Tuesday & she chastised me for not calling about my skin still being red from the seroma draining infection. I told her that I HAD called the week before noting that the seroma in my SNB incision was smaller, but my skin was still red and would topical antibiotics be appropriate? Via the nurse, she'd said the topical wasn't appropriate and this week's appointment was confirmed. I know she was concerned for me & she quickly went to work getting me into a specialist. We'd tried finding one 2 weeks earlier, then backed off when their office never returned my call and the oral antibiotic had provided significant improvement.
Thursday, I'd allowed an hour to get to the hospital since it was 9:30 in the morning & the traffic report hadn't shown any accidents. It took me an hour & 20 minutes so I rushed in panicked. The receptionist told me the doctor might not see me because I was more than 15 minutes late so I was in the waiting room trying to fill out paperwork while sobbing. Fortunately, the specialist did see me & she was lovely, so compassionate. The staff was breaking for lunch so I hung out for an hour, then had an IV infusion. When I finally got home, I called my MO's nurse to update her & my genomic test had just come in. I was devastated that the triple negative diagnosis was confirmed instead of the HER2+ report we'd hoped we'd receive.
Yesterday, I allowed nearly 2 hours to get back to the hospital for a Picc line & tutorial on administering antibiotics at home. I finished just in time to drive 45 minutes to the MO's office. I have my CT & echo next week and, if all goes smoothly, chemo will start in a couple of weeks. The MO said she could start chemo with the Picc line so we wouldn't have to wait for the port (non-flippers only, please!) After two surgeries in just under two weeks plus fighting the infection for over a month, I've been exhausted and done nothing to prepare. I awakened at least ten times last night since I can't sleep on my favored right side so will probably continue being tired and cranky plus now I'm not supposed to lift with my dominant hand. Things have been slogging along so slowly, but now it feels like everything is kicking into high gear. Three medical appointments this week, three next week and my house is a hot mess. Eeek!
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Ware, the daisy story made me cry. My mom was hospitalized this week and worrying about her made me miss my dad more than ever.
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Yes, Herceptin/Perjeta at the same time as chemo. Perjeta was my first infusion the other day.
I have round 2 Sept 29.
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great to have this resource for support and info!
Herceptin and perfecta at the same time as chemo for me too?
Everyone also getting the neulasta?
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Just a quick update on Emily: today is day 5 since her first chemo infusion. Over the past couple of days she has detected a change in her sense of taste, some mild constipation and dizziness, as well as feeling a bit fatigued this morning. Generally speaking, not too bad. No bone pain, fever, or nausea yet, so that's good. Only taking the Claritin now and keeping up with the SE log to see if the next round follows the same pattern.
I neglected to mention in my earlier post that our insurance directed us to a different wig shop than the one we requested. We went to the one they recommended, which turned out to be in a seedy part of town and only sold cheap, low-quality wigs. I'll re-engage with them tomorrow to see if we can make a different arrangement. If not, we'll just pay out of pocket for the one she wants.
Welcome Sr2295, you'll find this group is a great source of information and support! Yes, Emily got the Neulasta patch also.
kd - Emily is getting Perjeta, Herceptin, Taxotere, & Carboplatin (in that order) during each infusion. She'll get just the Herceptin every 3 weeks after her 6th chemo round. That'll continue for a year.
Sorry to hear about all the difficulties with the ports and the infection. It'll smooth out, don't worry!
Chin up!
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beebs- Thank you so much, I do too.
Ladies, please learn from my mistakes and HYDRATE, HYDRATE! I started running a fever last night so we called my MO. She gently scolded me for letting my upset tummy go for so long and for not hydrating. I pushed fluids all night and the fever is gone. I started imodium and my tummy is much better. The dehydration made the bone pain worse. Which I knew, but it was just so hard to drink in so much pain. So ladies please drink and eat no matter how hard it is. I would not wish the pain of the last few days on anyone! I am feeling much stronger today, and I know this bone pain will pass soon.
Stay strong, stay positive, keep fighting!
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Glad to hear you're feeling a bit better ACS74!
Thanks for the welcome Sam13
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Sam13--just wanted to share my experience as far as insurance and wig coverage. Ours too told me I had to use one of their preferred providers, but there wasn't even one close by. The representative then told me (I think he discontinued recording the call too) because he was talking really quiet, to go ahead and get the wig where I wanted. Get an invoice with the insurance code (he even gave me that) and submit it manually to the insurance company. He said they would initially deny it but that I need to appeal it immediately. I had mentioned to him that I care for children and that consistency in their daily routine is the best for their growth and development. I can't go from one day having hair to the next with none and a wig is absolutely necessary to maintain that consistency in their routine. He said that if I wrote a letter during the appeal process it would likely get approved because insurance companies don't want to get a bad name for themselves by denying something like this for that reason. You could use something specific to your situation and try the same thing. I sent in the original claim last week. Waiting for the denial then the fun begins. Normally this is a covered expense, but my husband's work, who carries the insurance, made this an exclusion. I'm normally a pretty calm and easy going person except for where insurance is involved. We pay an arm and a leg to have it, they can cover our necessary expenses. But don't get me started on that!
So glad Emily is faring well through the first round. You are doing a great job of taking care of her too!
Best Wishes
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My daughter is showing cold symptoms so her bags are packed and she's headed to grandmas. I will miss my baby girl (she's 17) but I cant get sick. Hopefully it is short lived.
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Oh my, today (day 4) has been quite rough. Not as tired but in a lot of pain. I know that I am not as hydrated as I should be but my tummy has been a mess and water is hard for me on a good day. I finally broke down and took a Motrin 800 which I have a prescription for but am not supposed to take due to the blood thinner, but I could not take it anymore. I hope that it works soon.
Oddly even with the tummy issues, I have been able to eat more than I thought I would so that really hasn't been a problem. My mouth is sore but I don't seem to have actual sores. I did get some biotene but don't see a big difference with that yet.
Thank you for letting me whine. Hope you are all doing well. xoxo
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Sr2295-thank you!
Sam-so happy Emily is doing well. It sounds like you are taking excellent care of her. I'm blessed to have a wonderful husband who has done the same.
Seq-Good luck with the insurance. It's a shame to have to fight for such things.
Ware-sorry to hear about your baby girl. I hope it passes quickly. Take care of yourself.
AngelaKS-My MO told me to take my hydrocodone leftover from surgery and it works so much better than motrin. Maybe see if you can get some of that? I'm sorry you are having pain too. Hang in there it will get better for us both. Please drink, I know that its hard but dehydration is worse.
Overall I'm feeling stronger today, the birthday get together went well. I have no problems eating. My appetite is good. I am doing small frequent meals. I'm mixing up what I'm drinking-lemon water, powerade, some tea, and even got a little sprite.
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I am trying to drink. My kids both have colds or something going on, so they are both home today from school. Trying to keep them resting so it doesn't get worse. They are 14 & 9 and grandma has suppressed immune system too so no sending them there. They are good though and know I am feeling rough so help out.
I never filled my rx after surgery, I did regret that last weekend, but I will fill it today and hope that it helps. I can't take more Motrin so I've had some Tylenol this morning. I am trying on the water, but it is ugh! I am going to have some hot tea in a minute and see if that goes down easier.
I hope you are all doing well today!
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So if we loose our hair that means we don't have to shave for a while now either, right?! It was a rough weekend and that was the only silver lining I could come up with
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CC2016 I thought about that too. I probably need to shave anyway, but maybe after that?
I am sorry you had a rough weekend. How are you today?
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Oomph, yesterday was rough. I felt good when I woke up, decided to do a 2.5 mile walk/run to get the blood moving and ended up flat on my back for most of the day afterwards. Slept a straight 12 hours. I hate feeling so weak and helpless.
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Thanks for asking angelaKS. Threw myself in a total pity party Saturday night into Sunday morning with infusion day coming Tuesday. Worked my way out though thinking of all the thousands of 9/11 families and friends still struggling to grieve. And then the message at church was of Esther and the seemingly random plan God had for her that saved so many. I've followed a crazy plan this year that He has totally blessed me with-still trying to make sense of the chemo chapter but must believe there is a plan. Spent the rest of the day crafting and drugging after a painful port and all better for now.
Hope the kids get better soon for so many of you. Tis the season but....ugh. Air hugs and kisses for the rest of the week!
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Bagsharon - I feel for you. It is hard for sure. I hate lying on my couch watching my family. We took a trip to the store yesterday and I was sorry. My husband said later that he felt bad for having me go, but whatever, I got out and Nicklas got to look at what he wanted to see.
CC2016 - do you have treatment every week?
My back is hurting and tummy is still a mess but I don't hurt all over so I am grateful for that. I am still getting my rx filled, just in case.
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Bagsharon, was it day 4 for you after TC? So sorry you had a rough time.
In absolute denial about my first infusion tomorrow morning. Have kept busy with work and home in order not to think about it. Did Coconut oil treatment on my hair (haha) a last hurrah for my hair - didn't blowdry straight - just curly wavy hair
My birthday is Christmas week - really want to be done with treatments and feeling better by then. Praying to God that I am healthy and this chemo works. Wishing you all successful, painless and uneventful treatments and ... let's kick this f*** dragon...0 -
Had my first infusion Friday (TCHP) so I guess that makes today my day 4. Felt surprisingly well over the weekend - even went to a birthday party and shopping with my 1 year old grandson. Back to work today and just hoping it doesn't hit me like a freight train. I've already warned my co-workers that if they come in and I'm lying on the floor that they should just walk away and pretend that is just normal office behavior. Trying my best to stay upbeat and ignore the mild sick feeling that keeps rearing it's ugly head. I figure that keeping myself occupied should help keep me from noticing. It's going to be a rough few months. Ugghh!
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Sam13, I'm glad that Emily's side effects have been mild thus far. Thank you to you & Seq for sharing your experiences with insurance related to getting a wig. My chemo class nurse recommended a particular American Cancer Society volunteer as being especially good with wig fittings, but their inventory is reliant on donations so I may purchase a wig if I can find one within my insurance allowance. I'm always hot so will probably go bare or with a lightweight scarf until high temperatures get below 70 degrees.
Bagsharon, I'm glad you got a walk in, but am sorry that it proved debilitating. It sounds like you really needed the lengthy sleep session.
AngelaKS, I hope the pain eases soon.
CC2016, how is the port today?
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If anyone has had any side effects with Neulasta, how long after the injection did they show up? I'm on the 3rd day after mine and am not feeling anything yet. Actually I'm feeling pretty good in general. No nausea, no tiredness (except for being awake since 3:00 a.m. this morning) and nothing else to write home about. I keep waiting for the bomb to drop, but this is now day 4 so hopefully I'm soon out of the woods. They said days 2-4 would be the worst. I actually spent the day yesterday shopping with my daughter, cooking, cleaning, and laundry. My biggest complaint is the steroids I have had to take the last 3 days have made me dizzy. But those are done till the next round.
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angelaKS-I'll be every 2 weeks (dd)
Smile- I'll be right with you tomorrow morning. And you made me finally look at the calendar. My birthday is Christmas week as well. If I stay on schedule I'll be done just in time. Here's hoping...that would be awesome. Gives me something to look forward to which is what I really need more than anything. I'm not working for the first time in forever- we moved in early summer to Florida. I didn't have a job lined up but then found out I had cancer two days before the move. Decided to look for doctors rather than a job. I've been enjoying the "time off" as much as possible but am so not used to having SO much time.
VLH-swelling is down this morning but shoulder/neck is still sore. Took a pain pill this morning before heading out for a mammogram on the same side. Best decision of the day
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kd...heres a mundane non cancer question...ate ypu on theatre or just enjoy it or is it your last name.. My daughter in college performs in theater..so your tag name makes me think of her!
I plan to go to work the day after my start on Thursday ..well see...it's my busiest day...but you are right. Sometimes we don't make changes since it hard..just going along with the flow is easier..my job is not super..but with kids it was easier to just have flexibility but not a great salary!!! Maybe when we are done we can both start job hunting!!! Haha
Bagsharon..I got some kefir today and ginger cbews...soooooooo great ypu dont have nausea!!!!
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Seq24- The pain from the nuelasta reared its ugly head within hours. At first, it was mild and bearable. Within 24 hours it was excruciating. The claritin and motrin took the edge off, but it wore off much too quickly and I was finding myself sobbing in the bathtub full of hot water just trying to numb my legs until I could take more motrin. The hydrocodone worked much better at controlling the pain.
I have been trying to post all day, but every time I do my computer locks up. I hope everyone is well!
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AC, be sure to start taking Claritan at least a day before. It is not an immediate relief it has to build up and be well in your system before shot
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I am having round 2 this Thursday. My SE have been mild so far. Today I found some hairs on my arms. I'm not usually a shedder so I assume it's the beginning of the hair loss. I had some bone pain last week. It came and went quickly. Sporadic for about a day or two. I feel a little better prepared going in for round 2 and I am hoping it is a similar SE experience as the 1st round. I am trying to ramp up my water intake in preparation. I started to feel my pity party a little bit earlier but tried to quickly stop it. Nights young, could still happen. I too often wonder why this is happening to me. I know there is a greater plan...I know I will understand one day. Hang in there ladies. One day at a time.
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lmenken- I used to teach theatre at the college level, and professionally acted/directed theatre for years. Have always used kdtheatre as a username in past.
Had my port put in this morning...still grossed out its there, but it wasn't bad. I remember everything even tho they said I wouldn't. I feel like someone rammed my clavicle into a brick wall & have a stiff neck. Hope I feel better before I start chemo on Wednesday. Going to chemo training class tomorrow than wig shopping.
So thankful to learn from everyone who has already started your chemo, please keep posting about SEs
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Jiffrig-Thank you. I did start the claritin as directed. I guess for me bone pain is just going to be a problem. I have always had it for my monthly cycle, too. At least now I know how to manage it.
I called my MO tonight again at hubby's pushing because my IV sight is red. I have to drop by for a visit tomorrow she wants to look at my arm and possibly give a steroid and a prescription for the ongoing tummy issues. Just a heads up for anyone that becomes raw from tummy issues like I have-epsom salt sitz baths and get milk of magnesia and refrigerate it. Dip a cotton ball in it and apply to the raw areas for relief. That's what my doctor suggested.
The bone pain stopped last night, thank God! The tummy issues persist even though I have taken the maximum dosage of imodium.
I had a bit of a pity party in the tub earlier but my husband quickly snapped me out of it. I am lucky to have him and my sister in law, who was recently diagnosed for the second time with breast cancer. She is 34. She helps me in so many ways. I only hope that I can support her as much as she has me in her weaker moments. She will be starting chemo again in a few weeks.
I hope you are all doing well, ladies, you're in my thoughts and prayers. One step at a time, we've got this.
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I may have missed this info but does everyone get neulasta??? My MO did not mention it but I never got a class so..not sure.
Ware..gping for round 1 with you Thursday..will send you positive vibes that you do as well as first. And try to keep your chin up ..soon..2 down for you!!
Kd..that's so cool about your background! I am going wig shopping tomorrow ...by myself..my daughter has school so hope I can navigate this on my own! Sorry about the port pain..hope it gets better soon!
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ACS74 sorry about the pain.Hope next time around it won't be bad.
lmencken I didn't get a class, but my doc told me to do it for WBC. I am supposed to inject it myself 2 days after chemo.
Started claritin today - since dragon-slaying begins tomorrow bright and early at 6:30. ....I've been shedding so bad since surgery, nails are chipping ... I have varicose veins and OA - so not sure how TC combo will affect me. Hope y'all have a good night.
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