Starting Chemo September 2015; join us!
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Unfortunately I am joining this club also. I'm having a port put in on the 4th and expect to start chemo the following week or two. I too keep waiting for someone to tell me this is all a bad dream but since I can hardly sleep I guess that's not going to happen. I work in an office and have some flexibly and can also work from home so I'm hoping to be able to keep a fairly normal or slightly reduced workload. I bought a wig and am going to try that route. I also have scarves ordered. I'm going to need some makeup lessons.... Regarding shaving your head I read it was better not to shave it right to the scalp because the remaining hairs will be prickly. ??? I'm also struggling with insurance issues and worried about getting hit with non covered charges.
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Well, I just got my first denial from insurance for the Lupron which is prescribed for me because I am very young and we are trying to save my ovaries. They rejected it because I am ER+/PR+ and my insurance only apparently covers it for ER+/PR- (which is quite rare). Totally bogus reason as far as I can tell since it is standard for young premenopausal hormone positive women. Each shot is over $1,000 and my doc sees me on it for several years so paying out of pocket is out. My doc wants me starting neoadjuvant chemo ASAP and I've already delayed due to insurance taking forever to approve the chemo! This is very stressful.
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Wish I was there with you and could give you a hug. It seems so scary but having recently finished my year and a half of treatments I can honestly say it wasn't as bad as I thought it would be. I actually had fun. I had 3 wigs, blonde brunette and redhead and made it a party. I actually had so much fun that my friend encouraged me to write a book. Hang in there. Hopefully your cancer was caught early and it has a beginning, a middle and a happy ending... It is hard to believe now but it won't be long until this seems like a distant memory! xoxoxo
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Hi twiggyOR, and welcome. Have you heard about the American Cancer Society 'Look Good, Feel Better' classes? Several people have told me that they teach makeup tips and give everyone in the class a bunch of high quality makeup: all for free. Might be worth seeing if there is one in your area. I never wear makeup but am still considering it.
teacherhikermom, that sucks! Can you appeal the denial? I had a similar, though not as bad experience yesterday: the pharmacy which will be shipping my neupogen called to ask how I wanted to pay my $587 co-pay? WTH? That was a lot higher than I thought it would be! However, I've learned not to take representations on the co-pays at face value: I called my insurance company who told me my co-pay should only be $150. still high, but better. They told me they'd call the pharmacy and straighten it out and then confirm back with me that they had done so by early next week. Let's hope they follow through. It is very frustrating...and stressful. Hugs!!
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My right mastectomy was Aug. 20, very aggressive anaplastic cancer with almost all the bad markers on intial biopsy. Surgical path results won't be ready for a few more days, but the 9 nodes removed were all clear. Already know that I'll be starting immunotherapy (Herceptin probably) plus two chemo agents, but which thise are depends on the path results.
I am scared half to death.
I'd like to join this group please
Thank you.
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Sorry, Annie. Why is there a delay? Low oncotype? Hope you hear something soon.0
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I forgot to add that I'd like to join this group. I've had one treatment. Thanks!
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hello September ladies! I am also just dropping in to say hello and wish you well for your chemo ride.
I did 6 rounds TC from March-June. Just starting to feel good again. You will find you all react differently, but the help and support you get from each other will be invaluable.
Plus, I know Octogirl and she is fabulous!!!
Not to be a wet blanket but something I realized after I attended the Look Good Feel Better. I enjoyed the class, connecting with other ladies, and scarf and makeup tips. And they do give you a large quantity of skin/make-up products.
But beware. Check out this non profit website "Google 'skin deep' and Ewg " (60,000+ products have been independently researched and evaluated for various risks) and you will find many companies' makeup has known carcinogens in them. When I realized that the ACC was partnering with these "pink washed" companies, I looked every item up I was given and threw 75% out. I was in tears, after struggling through chemo to save my life, companies were giving me, a cancer patient, products that could cause a recurrence.
Your skin is the largest organ of your body. Starting now, be aware of what you put on it. Start with your sunscreen. I found that the Neutrogena product I had been using was one of the worst on the market for 2015.
Unfortunately, this is all too common, and I have learned how many companies try to enhance or rehabilitate their images by raising money or donating to bc with one hand, while selling products with known carcinogens in the other. Itis sickening.
Sorry for the long post and the downer message, but after the cost to my body of surgery, chemo, and HT, I don't want to take unnecessary risks, and I don't want any of my bco sisters too either.
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Carolyn62 and Tessu, welcome and adding you to the group!
Jackbirdie, that is an excellent point about makeup which I never considered....will have to look at that. I agree with you that white washing the truth with donations is sickening! Off to do some research and thanks for pointing that out...not a downer at all, you are just keeping it real. Much appreciated. Perhaps it is a good thing that I've never used the stuff. Have to pay more attention to sunscreen also.
More later after coffee and a walk. Hugs to all!
Octogirl
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Octo. This. You are not alone. And it's your body, your choice. How about talking to a second opinion MO and perhaps a cancer specialized naturopath? I'm not sure I spelled that correctly. I will officially butt out of this thread now.
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Katy, please don't but out, you are always welcome here!
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I was totally unable to sleep last night and posting at 3 am, less sharp than I believed I was.
It was to grey that I wanted to say it's your choice and that you are not alone.
Since Octo says it's ok, I think I will keep you girls in my favorites and lurk a bit and watch over you. A very kind and much more knowledgable ((than me) bco sister named Specialk adopted our March chemo group. She was always there, ready to help with a question, and seeing many things down our paths before we did. If I can ever help, please pm me. Otherwise I'll try not to intrude too much.
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I think it's great to have the voice of experience chime in on this thread to help us out. I start chemo Sept 10 and will be back here often, I'm sure. Any suggestions, knowledge and pep talks are much appreciated. Thank you Jackiebird.
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Good afternoon,
I started my first round of THC Aug 24th. Days 3 to 5 felt yucky flu type symptoms. Very tired a little dizzy. I was able to do some Laundry dishes and went for short walks. The neutesita shot does cause bone pain Claridian does help with this. My oncologist also put me on 50mg B-6 and 1000mg B -12 for the neuropathy. I drink 72 to 80 oz water a day (get alot of excerise going to and from bathroom)
Food taste the same just no appetite. My taste buds came back sat they wanted Mexican food bad idea. Will wait to eat spicy again.
I feel better than I thought I would. I know this is round one, port fees funny at times cause it's a foreign object in body.
Good luck as you all start this journey we will all have a different experience I hope you all have the best possible experience try to stay positive try to get fluids and move around. Most importantly never ever forget you are all beautiful strong warriors.
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Thinking good thoughts and cheering you all on!
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I had my first round on the 25th. I am prone to nausea, so I take 8 mg Zofran first thing every morning. My tongue is very are as of today. I used lidocaine with Mylanta (magic mouthwash) to relieve it. I've had bone pain, but didn't get my Neulastin yet. Go figure. I'm a little tired and felt like I was jumping out of my skin for a couple of days due to the steroids.
I'm hanging in there. Hope everyone is doing well as they start therapy.0 -
Hi everyone. I was pretty sure (hopeful) that I would not have to have chemo with a 1.5 cm IDC stage one with no node involvement but my oncotype came back at 36 so chemo for me. I don't have specifics (chemo 411 is Wed) but I am getting my port on Tuesday and starting my first of four rounds on Thursday, September 3rd. Good Luck to everyone here and I am sure once I have my first treatment under my belt I will have lots of questions.
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Welcome, Admonkey, I know the feeling: I was feeling fairly confident, or at least hopeful, that with no lymph involvement I'd also be able to avoid chemo...but score came back high risk and here I am...I put you on the list.
Jackbirdie, it will be so nice to have some help from the old hands at this, and thanks also to ksusan for the words of encouragement!
Have to admit, I've not had an easy time the past few days....I just feel like I will never be ready for this emotionally! Most of Saturday was a major pity party...that ended with hubby just holding me in bed as I sobbed....today was a bit better; a two mile walk this morning helped, and I managed to get some work done that I'd been putting off for a while. Still feel prone to bursting out in tears at inappropriate moments however. :-(
I've been trying to watch lots of baseball (huge Giants fan) as an escape...baseball is comforting and yet engaging enough that I avoid thinking too much when I get into it. So, the Giants dismal games yesterday and today against St Louis didn't help my mood any....What are some of the rest of you doing to get your minds off of chemo?
Hugs to all!
Octogirl
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Octogirl I feel the same as you this past week. I have my port tomorrow and first AC on Wed. I feel ok warrior chick 1 minute then scared the next. I have spent this weekend relaxing doing my favorite thngs with family and friends. Today I indulged with a man-pedi, which helped my surgery/chemo stress level. After the re-excision earlier this month I feel like I belong to the surgery of the month club.
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Hi, I'm Michelle (warrior70) and I was on the September 2013 thread. I was Stage 2A, ErPr+, HER 2-; 2/4 nodes. I had AC (dose dense)+T (12 weekly doses). I still deal with fear of recurrence, and I am sometimes sad and angry that cancer invaded my life...but my life is almost aggressively normal now. I work full time, raise my 2 daughters, enjoy my life and am making inroads on my bucket list. I deal with Tamoxifen creakiness, but that's my only lasting side effect, and I prefer to think of it this way: unless I am told otherwise, I HAD cancer. Oh, and I have a full head of hair again.
Please accept my best wishes; PM me if you want to 'talk', have questions, etc.
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Hi all: A question for my September sisters: did your MO say anything to you about dental checkup and cleaning before chemo?
Mine didn't, but I noticed that BCO recommends it, to decrease infection chances. So of course, the occasional tooth pain I've been having now seems worse and I am worrying about it. I've never had a cavity in my life (yes, I am a grandmother: and also never had braces or a wisdom tooth pulled. On my first visit one dentist called in his entire staff to see what a perfect set of teeth looked like. Good genes, but trust me, I'd rather have had the cancer good gene). so, not sure if what I am feeling is a cavity or something else. Should I be worried? With my chemo being postponed once already due to the Lx incision being slow to heal, I am not crazy about having it postponed again.
Sigh, in the scheme of things it seems small but it just feels like one more way I am not prepared for this.
Octogirl.
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I'm almost three weeks past surgery, and meeting with the MO on the 10th. Pretty sure that the port and chemo will get started quickly. For now, I'm joining as a TBD.
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Ladies -I'm also from the April board - neoadjuvunct for me - my MRI last week shows NO EVIDENCE of the tumor in my breast and my lymph nodes are clear! So, while it may be hard to wait for the surgery, knowing that the chemo meds were a good match for the cancer is AWESOME, and now my surgery is going to be so much smaller than if I had the tumor out first (2 cm tumor).
Good luck, you can do this! That end date/last chemo will come around!
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Octogirl I have been trying to get lots of housework done before the chemo. I had surgery in July and am just feeling well enough to tackle the bathrooms/carpet but with starting chemo I dont know when I will get to do major cleaning again. My kids are helping with the everyday and small stuff. I also got a pedi on Sunday. I know I need to be better about taking time out for me but when I try I am always thinking about what is not getting done - at work, at home. Ugh
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Octogirl, I was told to see the dentist before chemo. Otherwise, it will have to wait until after, so it's good to get checked out , get a new soft bristle toothbrush, and find out if your dentist has mouth care tips (ask about a special evening paste like Clinpro or a fluoride mouthwash to use during chemo).
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Octo- I always had wonderful teeth and I took care of them well.
I was told and read elsewhere to get any dental work done before chemo. And I can attest to mouth issues during chemo.
So I went to the dentist. I knew I had a few cavities but I'd put off having them filled until jan/2015 when my better dental ins kicked in.
Then suddenly I was up against it, needing to get it all done immediately. By this time I had 7 cavities and a crown had cracked. There was no time for the slow approach, getting 2-3 done every two weeks. I found a dentist who did it all under iv sedation in a couple of hours. No delay to chemo.
Not that I wanted more anasthesia. Not that i needed the expense. (If was $425 extra for the sedation) But I had gotten uncomfortably close to the 90 day window to start chemo after surgery. In the end I was happy I'd done it. No complications.
Speaking of your mouth, the taxanes (taxotere and taxol) can cause mouth soresand thrush in the blink of an eye.
I recommend the following which is what my MOs head onc nurse told me: keep baking soda, a glass, and a spoon in your bathroom. Every time you go in there, and this is prophylactically, 1 tsp in a glass of tepid water. Swish swish spit until it's gone. I used a small glass. If you are going in there to pee, fix your face, whatever, do it every time. I had mouth sores the first two infusions within days. I stepped it up to many swishes per day and that fixed it.
I still had a burnt taste in my mouth that made coffee, my favorite morning ritual, unenjoyable. Separate issue.
Also for mouth sores my onc nurse said no supplements, except one, L-Lysine, 2 500 mg caps per day.
All other supplements and probiotics were stopped. This is a much argued point, but the fear is protecting the cancer cells. They just haven't done trials so they don't know. Best I thought to let the chemo do its job. So no other supplements except the Lysine.
You ladies will be very frustrated as you go through this process and you will hear directly conflicting instructions from different peoples' MOs. there is no one standard of care. I indeed was very frustrated too. I listened to everything, sometimes did my own research, and then made my own decision. If at all possible, i followed my own MOs direction because psychologically i needed to believe in him. Still do.
Again, sorry for the long post.
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about housecleaning:
"Cleaning for a Reason" is a non profit that will send someone to clean your house thoroughly, twice, I think, while you are going through treatment. They operate in metropolitan areas across the U.S. It's an easy Google search. Sorry no link. I'm on the run.
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@teacherhikermom - I like your idea, I actually took that and ran with it and found a stylist who specializes in medical hair loss to shave my head and style my wig for me. I haven't really told too many coworkers yet. Just my direct supervisor and HR for paperwork. I don't think I could handle the typical reactions (pitying looks, sad eyes, and consolation hugs) so I'll just let the rumor mill take its natural course.
@octogirl- I have mostly thrown myself into work and even began bringing work home in hopes of wrapping up most of my ongoing projects before I start missing time so I am shoving less on my colleagues. However, I definitely have my moments (ok..hours) that I am just overly upset about all of this. When I catch myself doing that I get outside and go for a walk. I also try to lose myself in baseball, the LLWS was great for that. Kids and baseball doesn't get much better!My MO didn't say I need to see the dentist, but I go twice a year and am on schedule with my visits so I don't think that is a concern, but if you have issues it may be best to take care of them ahead of time. It'd be easy to get some infection if you have work done during.
@Carolyn62- I hope you are having a good day...You can do this!
I hear you all about the insurance issues. I have a primary and secondary, the problem is that the primary is has approved everything so far, but my secondary hasn't picked up anything and apparently there is a lot of paperwork that we have to file to get them to pick it up. Just hoping this doesn't delay anything already planned, I'd rather they pay as much as possible, I know the prescriptions alone are gonna hurt the pocketbook.0 -
Octo girl
I too am a basket case. However I thank you for this website. It definatley has helped me
I guess I will be doing the chemo thing this month. Sort of keep putting it out of my mind but
when I think I am getting a definate date I get that bad feeling again.. Going for a pet scan on
thursday. Called the wig store today. But really fromeverything I read I think we will kick this thing right down the road. I am trying to find someone that has done some alternative remedies also.
Rosieo
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My dates are set and I have precriptions in hand. My first treatment is September 8th. Cytoxan/Taxotere 4 doses 3rd weekly, Nuelasta, Decadron, Compazine and a partridge in a pear tree...Geez you go your whole life on a couple Advil now and then an suddenly you turn into a walking pharmacy! I tell you what the hardest thing was getting my kids school runs and babysitting set. It's like organizing a military campaign. I feel better not waiting anymore though. It's more proactive in my mind, being able to at least control the calendar organization. Now I have a week to decide what to do with my hair.
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