Chemo starting November 2018
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Ran across this article this morning.
https://www.marketwatch.com/story/the-staggering-c... There was a social worker that introduced herself to me at my oncology appointment yesterday. It was nice to see that. She had me fill out a survey with a few questions. Your stress level from 1 to 10.
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Thinking about you today, EdithMary, hope all is going well. Hugs.
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Catlady - you had asked about the port (I named it John) and whether or not I was "out" for it? Nope. Twilight, conscious sedation - I didn't care but was aware. I felt some pulling and tugging and at some point it sounded like someone had opened up and sprayed a canned whipped cream. I was positioned on my back with my head all the way to the left side, cheek as flush as possible to the table. I looked up some meditation and breathing thingies online and I guess something worked bc my heart rate dropped a bit I was so calm. Interventional radiology unit placed the port, had a great team of Drs and nurses. I've taken some otc Tylenol for some of the neck pain and used a small ice pack for over the port and a wrap around heating pad for my neck as well. Stretching exercises from my PT has helped. I managed to do a full on yawn today (though it was in the middle of a MTG at work today, oh well). Never has a yawn felt so good....
As for the hair thing, I had about 8-9 inches cut off before the mastectomy surgery so it was chin length, then a week ago had a fun time w the hairdresser. Trimmer guard on bottom (bout 1/4 inch) and Edward Scissorhands on top (2-4 inches) with an under cut. My husband had only known me with long hair so it's been one of the many adjustments for us both thru the process.
I've got easily 2 more surgeries post chemo before radiation tx and some hormonal therapy. Some of it's out of the way. Looking fwd to saying good bye to having to worry about a 'bad hair day' (my answer was always and will be afterwards = ponytail).....
Looking back thru the posts from earlier starters for chemo (Sept and Out 2018) has been helpful. I hope everyone's having a good day (errr night).
MaddieBrie1
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Maddie Brie, thank you. That helps me a lot. I will be thinking about whipping cream Monday, that made me smile! You can look stuff up on Google, but it helps to hear things first hand, what they did, and what you had to do. Meditation thinking and breathing techniques - I'm going to try and figure that one out, didn't even think about that, thank you! I've been reading back through the pages you suggested, and you're right, there is a lot of information and good place to read, thank you! I think once when I had a colonoscopy they used this conscious sedation thing. My mom died from colon cancer in the 1980s and I've told my doctor this was not the diagnosis I was expecting (wrong body part).
My husband has agreed to cut my hair tomorrow, with his "Edward Scissorhands" trimmer (thank you for that comparison, I like that), and I will look for those lengths you described. I'm 55 and have shoulder length hair, but I'm a hair twirler, so I'll have to figure out a new nervous habit to conform to, maybe a bald head rubber, or something like that. I have a fidget spinner somewhere that I bought for my cat to play with. Ponytails are ALWAYS wonderful. If you ever watch Better Call Saul, that lady has the best one! Blessings and hugs to all. Be brave. Thanks, Maddie Brie.
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I'm going to be starting on November 5. Haven't gotten my her2 results back yet, but mine had spread to the lymph nodes. So I'm starting with 4 rounds of AC, and in the next week or two I should know if it'll be followed by 4 more rounds of AC, or if I'll go to Taxol after. Nervous so far!
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Welcome Jiffs, I'm nervous too. You start 2 days before me. I have 2 lymph nodes involved that I know of. I am doing chemo first. I get my port on Monday. Wishing you no problems, and big hugs. I'm nervous too.
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I'm in my early 40s and come from a medical background. I get the reading up on things, to be honest - I have over read and I think I'm going to stop browsing unless I have a more specific question. Be it Google (ugh, one of the worst in my opinion - or WebMD ---> can't tell you how many times I have been convinced thanks to symptom checker on WebMD that I am going to die of some weird strain of bacteria or virus!), the 6th of Dr. Susan Love's "Breast Book", NCI or the BCO forums.
I want to be informed, to feel some sort of control, ask intelligent questions when I meet with my team and have some sort of mental road map as to where things are going. On my Caring Bridge site, where I update family and friends (so we don't get inundated with questions and answer the same ones over and over from well meaning f/f) - I likened this whole situation / journey / battle (whatever term makes you feel better) to a driverless bus full of poorly made mannequins (PS don't Google that) going 100MPH down the highway.
At some point I know I need to relenquish some of this out of control feeling and totally trust my team and that they have my best medical care in their minds when they suggest these care decisions.
I feel the need to be my own advocate in my healthcare decisions, I feel like a scheduler and coordinator of my treatment and active participant. I need that.
Just a little pensive tonight. I hope my words help some of you.
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I went and had my hair cut into a very short pixie cut today. I feel very strange about it. It looks really good, I knew it would because I've had similar cuts before, but I liked my hair longer and even though I knew I didn't have to cut it short it felt like I kinda did this against my will. My hair is so incredibly thick and was almost shoulder length, letting it just fall out at that length would have be a mess. It was a practical choice and I don't regret it but I wouldn't have chosen it under different circumstances.
Next week is going to be crazy busy. I've got my MRI, Echo, port placement, annual gyn visit, dental cleaning all scheduled during the week and I still have to work both my jobs. Is it strange to be looking forward to chemo starting because that will mean all these rapid fire appointments will be settling down? Has anyone gone to their primary to discuss management of everyday things since diagnosis? I want to make an appointment with my regular doc to discuss my complete inability to sleep. I've always been a bit of an insomniac but since all of this I hardly sleep at all anymore, I just lay in bed and stew over all of it and can't get my brain to turn off. Is this the sort of thing we discuss with our oncologist though? I think I need to get clarification on who will address what.
Good luck to everyone starting their chemo this week. Light the trail for those who will come after you
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May I join your group my first infusion is Nov 19. Very worried about fatigue. I am a teacher and just returned to work yesterday from surgery Aug 31 BMX with DIEP reconstruction, then again on October 15 with a partial mastectomy. Already fatigued from surgery recovery. Worried how I will be on my feet all day through this
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Welcome Fighting-Mamma sorry you're here, glad you found us. I'm starting with chemo on the 14th and won't have surgery until that's finished. I too worry about my fatigue level with chemo while working but I'm trying not to build up too much anxiety in advance.
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Hazel-nut - for sleep problems I went to my primary care doctor, the plastic surgeon had prescribed some diazepam (5mg, low dose) for muscle spasms and anxiety after the mastectomy and TE placement I had my primary write another one after that had run out. I don't take them every day, just a half a tablet before PT sessions and occasionally when my brain just won't shut off. Sleep is one of the most important healing things we can do. It's like nature's great reset button on the computer that is our bodies. My docs also said benadryl (diphenhydramine hcl) 25-50mg for sleep is ok. I think looking forward to anything that stops the deluge of appointments is pretty normal - however, this thing, this breast cancer is a long term management dealio. Unfortunate, but true. Some breathing and meditation techniques may help w slowing your brain down too.
Fighting Mamma - thanks for guiding our youth and future in your profession and sorry you have joined us under these circumstances. I have 3 friends / co-workers and a cousin that have been thru this in the last 10 years, all with different types, treatment plans and surgeries. The one coworker that went thru chemo (and radiation, after a lumpectomy no node involvement) said that her fatigue was cumulative - she was on a combination therapy of doxirubicin for sure (she recalls the red) and something else for 4X every (3) weeks with the shots of Neulasta to boost WBC. She said her 3rd she felt vaguely flu like, but her 4rth and final was the worse fatigue wise. She is mid-fifties, no kids, no pets. Had her infusions on Thursdays, worst side effects (if any) over the weekend and was feeling more like herself come Monday. She worked thru most of her tx and only missed a few days shortly after her last infusion. She actually said that the fatigue from radiation caught up with her quicker since it was daily tx. She also had an allergic rxn to the adhesive for the Neulasta OnPro (the programmable shot post infusion so you don't have to go back to the Drs).
It all seems quite mixed with what side effects, if any, people experience. Everybodies body chemistry is a little different so they will metabolize these treatments a little differently too. Each tx center usually has SOPs on tx plans, some of the steroids, anti nausea and anti emetics are given at the chemo infusion session too. There are usually some rxs to fill to take orally once you're home also.
Folks from the previous months groups starting chemo had said sleep is also one of the most important gifts we can give ourselves. That and to wear whatever is most comfortable, shoe wise - many of them liked Crocs.
I hope this helps.
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Well, here I am. I have never joined a message board before but I'm thinking I might need this. The last two weeks have been appointment after appointment and I am already feeling worn down. Was diagnosed Oct 12th and I think I'm starting chemo this week but the MRI showed a possible second mass so I am having a second biopsy Tuesday. So the chemo won't start that day as planned. I feel very fortunate because I'm 56, not working and only one 14 year old son at home with a great husband, but .... I have struggled with sleep for years now and finally got it under control when this hit, and I just wish I was feeling better going into all this. Oh well. I had just decided to grow my hair out at the end of the summer and had that growing out thing going on when the frustration hit me last week and I gave myself a Klingon style bang cut. Kind of suits my mood. It's been over a week since I got the port placed and it is still sore, although I think better today. That hasn't helped my sleep. I feel like I should be getting every thing prepared and in place and instead I just want to do nothing. Anyway, I was very glad to read other peoples experiences. That has helped both answer some questions and give me an idea of some I need to ask. I appreciated people sharing. Thanks all.
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Hello, Ladies, I believe I’m joining you this month, I just don’t know when. Waiting on my referrals for blood work and port. I am scheduled for my chemo education with a PA on 11/13.
About me: 54 year old cat lady. Breast surgeon has me at stage 2 grade 2 but we’re still scanning. 3.5 cm, ER/PR-/ HER2+. TCHP 6 cycles every three weeks, then surgery, then radiation.
I start work leave on Tuesday. I found that the anxiety of unfinished work was stressing me more than the cancer diagnosis.
Any other runners in our group? I’m hoping to run (or walk if necessary) a half marathon in February. Unfortunately, that is complicated by a surgery I had for a herniated disc in January. I was just getting back into running shape and then this. Le 😔
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Lisa, I just wrote you a personal note, but decided to get back on this thread to re
mind myself of where you are in the procedure. I will pray for you as you get the port in tomorrow, and hope that this makes your treatments easier. I am trying to just go with the IV's as I only need 4 treatments in total, if all goes as planned. I am getting just two drugs-Docetaxel and Cyclophosphamide, administered every three weeks if things go well with my blood tests. That takes me to the first week of January for my last treatment cycle. I look forward to a rest then, before radiation starts. My big concern is, of course Christmas, which I would like to spend with my large extended family (three married girls and 17 grandchildren)--not on the day, because one of my son-in-laws is a priest in Baltimore and will be too busy, but sometime that week. But can we get together without somebody being sick, and should I risk infection? That will be a hard call to make. Hoping so. It is the first time in 5 years that we could all be together over the holidays (because the priest's family was in Kansas, far away from the rest of us), though we have had some hilarity in the summer months occasionally. Must not worry, however, and take everything a day at a time. I made plans for someone to cover my job (I teach at college) this Tuesday, in case I am not well enough. So far, no nausea, etc, for which I am grateful. We'll see if that lasts! Well, anyway, best to everybody, have a good rest tonight, and we will be remembering our Missouri CatLady as she has her procedure tomorrow.
Best to all, EdithMary
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Hi LizzieBo I felt the same way about joining the message board...never have but might need it. The experiences and upbeat attitude of these ladies helps so much. I too am 56 years old. I got the news from my Dr on 10/25/18 and have been in a fog ever since. I had my port put in this last friday. My first visit with the medical oncologist is this monday 11/12. I hope I start chemo then. I never thought I would wish that lol My health problems have always been nothing more than an occasional boo boo. Then I had a hysterectomy in July and now this. It's mind blowing for me. The support from others really does help.
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EdithMary if you find good advice about how to go through this with your IBS I would be interested. I have IBD (UC) and am nervous and at the moment I guess just trying to ignore the possibilities of complications from that. I haven't even started chemo and I feel like Ive been in a fog since the diagnosis. Tomorrow is my last "test" and then I'm hoping things will calm down and I can process what's going on. Well, I know things will calm down because I won't be bouncing around. Friday has been set at my start date. Both my girls are coming home from college for the weekend to pat me on the head and reassure themselves.
I plan to get my hair neatened up short tomorrow or the next day. It's a Vulcan look, my husband corrected me, not Klingon. He calls it the Sexy Vulcan Princess cut. Which is surely the only time I've ever been called princess.
I took care of both my parents through their cancers. I would wake up night after night ruminating about what-ifs. I am waking up again now, but I am not ruminating. First, I know my prognosis is much better than theirs was. Second, I've walked down this street even if I didn't live on it. But I wish I could sleep. I already take something and soon I will make an appointment with my sleep specialist but at the moment I don't want even one more dr appointment. I would say the calm at night is reassuring. And I can go through my check list of gratitudes. Soft bed. Heat. Roof. Hot water. I start there and work my way onward. Hope everyone else is doing well.
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HazelNut: after reading your post and thinking about your kids, I thought my experience may help you. I have an 8 year old little boy. He is very sensitive and knew pretty quickly something was up. We consulted with therapist and the Inova cancer center and they suggested telling the kids early and with facts. Also to inform someone at your children’s schools, we told the counselors first, then shared with the others later. I happen to teach at my son’s school aonhis support system is vast. Kids process trauma in very different ways and at different times. A sick parent is considered a trauma for them. Even with all of this prep he has struggled. We told him within two weeks of my diagnosis and have kept him in the loop. After a few rough weeks and a massive meltdown, he seems better. The best bit of advice has been to let them help you and attend appointments if possible. Everything is a mystery for them and allowing them to have control in something is really important. Best of luck
Fighting Mamm
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hazel-nut oh my I could not agree more about all of the travel to appts here in the dc area. I am in VA and refilling my EZPass weekly to make the travel somewhat tolerable. Some days I have put 125 miles on my car going back and forth to all the different specialist in Fairfax, Alexandria and McLean. So ready to be somebody with women of that. Hang in ther
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LizzieBo - Sexy Vulcan Princess, making me smile! I tried to get my husband to cut mine, and while he was looking up "pixie", I went ahead and chopped it all off. I got a hat from KimKaps, even though they are scrub hats. My surgery tech had one on yesterday with butterflies and it was just so cute! The one I bought was only $10 and, of course, it has cats!
It is nice to see everyone, even though it isn't really nice, but we are not alone. I had my port put in yesterday and boy is my arm sore. You can't lift anything over 20 pounds, so make sure you get your dishes done and laundry done before you go do this! I'm 55 and am thankful my kids are grown. My mom died of colon cancer and my husband's mom died of pancreatic cancer, but it was a long time ago, and so many things are better now. It is good to read all the encouragement and tips, what a great bunch of women we have! My hugs and blessings to you every day. I don't know how everyone feels about faith - my brother told me, have strength in Him and trust in Him, and I remember those words when I get scared. And I looked up breathing techniques, and that helped me a lot yesterday. Love, Lisa
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Hi Ladies
Thought it was finally time to jump in and post after lurking for several months (since my GP found my lump in July). I'm a 50 year old professional, with 2 teenaged kids, a wonderful dh, 2 dogs and 2 cats and I DO NOT have time for this cancer sh*t! I'm just wrapping up my last two weeks of work before chemo, which starts on the 20th of this month.
I'm hoping to find a place to get support, vent, and check in on the side effects that are likely coming my way.
Glad to join you all (ok, not really, would rather never have heard of this site, but whatever...)
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Fighting-Mama - The drives are killing me. So are the tolls. Its become a real sticking point with me that almost all of the Hopkins campuses have paid parking and they don't validate. It cost me $8 just to park for my breast MRI yesterday and I drove home (in the pouring rain, on the 495 parking lot) steaming over that $8! Like we don't have anough expenses already!
My kids took the news pretty much how I thought they would. We sat down and talked about it but then life continued as normal and they could ask their questions and then go back to doing their thing and that's what really helped them I think. I hate the influence that tv and movies have over kids when it comes to cancer. It's full of dramatized worst case scenarios and thats what fills their head when I tell them I have cancer, they needed to see that I'm still mom and things are going to be ok despite what they see on TV.
Welcome Crafty-b, sucks you have to be here but we need each other to lean on.
I get my port done early Friday morning. Anyone have anything to share about how you felt the rest of the day after having it inserted? I'd really like to go in to work after the procedure, My assistant works adjusted hours on Fridays and finding someone to cover for me is a pain.
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Hazel-Nut - just a quick note about after the port - you might be sleepy. We stopped to pick up a pain med prescription and I took a little nap while DH went in to get it, then I was up the rest of the evening, if that helps any. I'm sure sorry about how you have to pay to park and those toll fees. That just isn't right at all.
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MissouriCatLady - I'm the type of person if I doze off for even five minutes my brain interprets that as being enough sleep to hold me over till the next day. When my kids were babies I was the mother that could never nap when they did because it would ruin my chances of sleeping later on. The drive is fairly long though so I should be able to grab a nap but that will probably mean a very sleepless night. Good thing its right before the weekend and I can be lazy.
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Just looked this up because my HR rep said to look into it...
"The IRS allows you to deduct qualified medical expenses that exceed 7.5% of your adjusted gross income for 2017 and 2018. Beginning Jan. 1, 2019, all taxpayers may deduct only the amount of the total unreimbursed allowable medical care expenses for the year that exceeds 10% of their adjusted gross income.".
I don't know if parking at a medical building would qualify, but I am definitely going to ask my fin adv. Keep your receipts!
Since my stuff began back in April, I've already got 2X 1-inch binders full of explanations of benefits and bills paid by me. It's crazy to try to match up all this stuff when they don't bill you or insurance until 3-5 mos after the dang procedures!
Somehow I have overpaid 3 separate times on some diagnostic imaging.....
I mean, come on, I like getting checks in the mail as much as the next person, but really... Really??
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https://turbotax.intuit.com/tax-tips/health-care/m...
Transportation costs count! See link to article....
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CatLady - I'm glad the breathing techniques helped!
LizzieBo - I'm one too! Liz preferred, but my cousins say Lizzie, my mom when she's mad did first middle AND last name! Vulcan princess - lol.
CraftyB - vent away! Reading some of the oct 2018 chemo starts or Sept 2018 chemo starts may help answer some of your qs too. I think there may be some specifics under your specific type of cancer as well? I thought they had a section for that.
HazelNut - port stuff, since they did mine under twilight, I had to have someone drive me home and was told not to make any financial decisions or operate heavy machinery afterwards. Hubs basically put my nonsense talking bum in bed. I was telling him about the spray can on whipped cream during the surgery and apparently craving ice cream sundaes.
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Had my first treatment yesterday. It wasn't bad. It was a long day for what seemed to be a really quick treatment. I'm doing AC right now. I ended up with a really bad headache last night that Tylenol did nothing for. I have some T1s that I took today and that worked.
I had crazy energy today, probably from the steroids. I cleaned the whole house and my hubby said I was bouncing around lol felt a little funny in the head when I first work up though.
Hoping to still have energy tmrw to get some laundry done! I know the crash will harken at some point. Drink lots of water!!
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Hello. I too will be joining the group. I was diagnosed in October with triple positive/HER2neu grade 2. My port was put in last week and I start chemo on Friday. I will have 6 chemo treatments every 3 weeks followed by surgery, radiation, and chemo. Does anyone else feel like they need to hand out jerseys when doctors get added to your “team?"
I understand about the rapid fire appointments. I can checkmark the MRI, trip to the surgeon, bonus ultrasound, visit to MO, flu shot, port, and echocardiogram off my list. I go to the dentist tomorrow. Chemo Friday. I did visit my primary and invited him to join my team and keep him up to date with what's going on. He gave me a pneumonia shot (perhaps I need to specify to my “team" I don't require needles to join
). I'm thankful for all of your posts and words of wisdom.
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Hi everyone Im dropping in from April Chemo group..Sorry your here but glad u found the forums.
Jiffs, headaches can be from nauses tablets or giving pre meds too fast. U should report it to the office so they can adjust ur treatment. My experience I couldn't take Zofran it give me migraines so my MO switched me to Kytril. Hope that little info helps.
I know the feeling of all the appts and unsure of next steps. Honestly it all works out and come together gradually. Report everything u feel, they infusion offices and doc.s are there to help make the process easier for you. I worked full time through my chemo. I wouldn't go into conference rooms(asked for webex) or cafeteria since there was so many germs..I was the first to notice a cough or sneeze, followed with," are you sick?? I can get you a face mask." Also took days off when needed. You will know what ur body needs just listen to it and be kind to yourself.
Drink plenty of water even when you dont want to.
Sending you good vibes and minimal SE's.
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