Who is starting chemo in September 2016?
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ACS74--How long did it take you to get the freebie packages? I ordered some of them several weeks ago and haven't received any of those. What did you all get from Phils Friends? I think that is one I signed up for too.
Thanks for the encouragement for my chemo on Friday. I've hardly slept since Saturday night because I'm so worked up about it. Maybe a bit here and there. It's pretty much been like that since mid July. I'm looking at is as practice of going through the day being tired. I'm pretty used to it by now. Hopefully the fatigue from chemo is no worse than going through the next day after a sleepless night. I got my wig styled today. It looks exactly like my own hair so that is good, but I'm going to be so self conscious when I have to actually wear it. Scary thought to me. More scary than the SE.
Thanks for your support. Please be in touch as to how things are going for you.
. I'm so thankful I found all of you on this site. I have received more information from all of you than any place else. Thank you!!0 -
Seq24- I requested these on 8/31. I was quite surprised at how quickly everything has come in. Phil's Friends sends a lovely package including-fuzzy socks, hat, blanket, water bottle, kleenex, chapstick, a journal and pen, bible, CD, and then a few personal touches according to what you select.
I know how much I stressed, especially when it was time to go to sleep. I cried myself to sleep most nights. I am an A type personality, I like control, when I lose that it messes me up. For me the hardest part of this has been the sense of not having control over anything. So, I cut off my hair yesterday, losing my hair on my terms. It made it easier. Coming here and learning from all of you wonderful ladies has certainly helped me to prepare for chemo. They were all quite impressed at how prepared I was. I had my cooler with 4 waters and one apple and one grape juice. I had my chipped ice to suck on, all kinds of snacks, my blanket, and my oldest daughter to keep me in good spirits. Maintaining some sense of control is key for me and knowledge is power. The next few days are yet to be determined and I imagine they will be much worse, but hope that I'm pleasantly surprised. The first one is the hardest, because you build it up so much in your mind. I promise it will get easier. Stay strong think positive thoughts and before you know it you're on the other side.
Cancerpicked-thanks for the tip for the natural alternative to more chemicals in my body to fight nausea. I hope to pick up some tomorrow, or maybe later this evening if possible.
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I had my first infusion today. Had a nice hearty breakfast, drank a lot of water and took claritin but other than that, I didn't do any other prep. It all went very smoothly; no reactions. No metal mouth. No nausea. I'm tired but that's mostly because of the benedryl they gave me and the lack of sleep last night from the dexamethasone. I think I talked them into giving me the Neulasta pack for my next infusion instead of making me come back in. After all, I am still working full time.
I got my Phil's Friends box yesterday. It was packed full! And even the box was decorated. Very thoughtful. It was nice to come home from work with the weight of upcoming chemo on my shoulders and find that waiting for me. But I haven't gotten any of the other freebies other than the most important one: the wig from the American Cancer Society but I had to make an appointment for that. My hair is already grey and fairly short so I too am looking forward to the full Carol look from Walking Dead. However, none of the grey wigs looked right so I decided to get a medium brown bob that flattered my face and skin for a different and fun look.
Speaking of freebies, I tried the fighting pretty site and they wanted a 30 dollar donation. Anybody else have the same problem? I kind of feel petty but I'm sure people are making donations yet they are expecting even more donations to send out packages.
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I think the $30 is what would be considered "paying it forward
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cyjp - I am also triple positive...but you won't get chemo for a year!? You mean the Herceptin, right? That isn't chemo...or at least I don't think it is. I have chemo for 5 months, then Herceptin and Perjeta...but the Herceptin is every three weeks for a year...oh joy.
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How is it paying it forward if the next person also has to pay 30 dollars?
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Hello! I just joined this evening. I start chemo tomorrow. I had my port put in last Friday. I also have PET/CT scan early tomorrow morning before I have my chemo appointment. I am so glad you started this thread. I joined a couple of other message boards but they are not active apparently.
I will be doing Herceptin, carboplatin Taxotere & Pertuzimab every 21 days.
Thanks again!
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So what are all these freebies? I've learned about the wigs from American Cancer from you all but don't know the others. In my wig info searches I found a great local listing for all things BC related through the Komen website, better than any others so far. There was a local salon listed that provides free consultations and wigs, and it turns out the buzz cut and wigs fitting and styling and scarves! My wig is on order now and already have a scarf. My only thing was I really want a hair cut now pixie-ish, not buzz just yet. Couldn't talk them into a cheap cut and paying $50 for a cut that will fall out in less than a month is just not an option for me. Going to a beauty school tomorrow for a cheapo cut hopefully. Still not sold on the whole wig thing but I'm not out anything and might get more freebie scarfs which I totally prefer
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Hi CC2016, MFalabell, who started this thread, is the one who alerted most of to cancerfreebies.com. She also posts other things she has found. I took my mother with me when I got my free wig and she said that it made her feel better about all the money she donated to the American Cancer Society over the years to see it actually helping someone in a literal way.
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Hi AngelaKS-
Welcome to BCO! So glad you're here, and we hope you find this to be a place of support as you begin your treatment!
The Mods
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Thank you for the welcome.
How does the Phil's friend work? I went there but it asks for sender's information. Should one of my friends ask for this?
Thanks.
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lmencken, ACS74: I'm also on the same protocol and start on the 16th. Good luck to both of you and I'll be interested to know how you are doing.
Thank you all so much for these tips! I haven't had my chemo Ed class yet but I feel that I already have
B
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kdtheatre - I am very strict with my diet because I have type 2 diabetes which I control with diet alone. So, I packed low carb snacks to take to chemo with me, including ham, cheese, nuts, some raw veggies, plain greek yogurt with some blueberries, and a couple bottles of drink. I was there over lunchtime and was very glad to have my safe foods to eat. Poweraid is another brand of sports drink like Gatorade. Poweraid Zero is sugar free. It is too strongly flavored for me so I cut it in half with water. Oh, my signature was wrong. Thanks for pointing that out to me. I am starting tamoxifen concurrently with chemo. I put it off for a week so that I could separate out which side effects were from what. That reminds me, I start the tamoxifen tonight!
Head cover - I strive for low maintenance so very early on decided no wigs for me. I don't even want to be messing with tying scarves. If anyone wants a "grab and go" head covering, I recommend visiting a motorcycle supply store. Mine had an entire wall of doo-rags to choose from in a variety of fabrics, colors, and patterns. Prices were $8 to $12 a piece.
Sea Bands - I remember using these for nausea during pregnancy about 20 years ago. They did help but I had to have them strapped on pretty snuggly so they wouldn't be very comfortable to wear 24-7. They have a little knob of plastic that presses on your wrists. This pressure point is supposed to help prevent nausea.
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Bagsharon- I encountered the same $30 fee from fighting pretty. Since I could see the products and don't know that I would use them/like them I opted not to do that. It is a great idea, just not for me.
CC2016 For freebies, go to breastcancerfreebies.com. It has a lot of links on the right side for awesome freebies. I cut my hair into a Pixie cut yesterday. I lost A LOT of hair, but it's not as bad as I thought.
AngelaKS- welcome! That's a great name you have there, my name is Angela, so I'm sort of biased.
For Phil's Friends you can fill it out for yourself, or have a close friend/relative do it for you. Either way is perfectly acceptable, as one of the other ladies did ask permission. Beebs2704- sorry to meet under these circumstances, but let me know if I can help in any way.
On the SE note- metal mouth surfaced during treatment, but lemon drops helped with it.
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Boondock and ACS74 - thanks for the scarf how to's ... my daughter who is a scarf girl is at college... I will be practicing now this week!!
Sam- Emily is lookin' good!
ACS74 - so glad you are doing well after your first one!! Tired I can do...for the most part. Glad they give you those anti nausea meds right away!!!!! I have visions of me at work running down the hall to the restroom!! Continued good vibes for your days ahead!!!!
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lmencken, ACS74, beebs, bagsharon … we are on the same protocol. I had my meeting with the MO today – first infusion is 9/13. No chemo class – she said, this is it- no one will tell you more than me, and my nurse on infusion day. She is real no BS type. She said she doesn't believe in icing (cold caps, mitts and socks) – chemo is supposed to affect the whole system, and limiting access to parts of the body was not "intuitively effective". They don't even give ice chips – so, if I want to suck on ice (which she said, why?). Will get the Neulasta syringe to take home with me and inject on day 2. Claritin – she says "an old wives' tale that actually works. Zofran will go in the premed injection, and will get a Compazine prescription for home – as needed. She also added Dexamethasone 4x to prevent fluid accumulation. Lorazepam if I have insomnia (though she said I could have melatonin start 3 and go up).
Let the fun begin. I am doing this for the extra 4-8% reduction in 10yr recurrence chance. So that I have peace of mind that I did everything I could do be healthy and see my kids grow. ..
Good luck ladies. Will keep you posted.
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Wow, Smile, good luck with your s/e's if you follow your MO's advice! That's pretty radical thinking when all of those things have been proven to help. It's a shame she is not more supportive of your quality of life while going through all of this. Claritin made a huge difference in my bone pain when I used it for the second infusion and neuropathy is no joke
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Leydi - you are doing your hormone pill simultaneous with chemo? I'm thinking I should ask to do that?
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jiffig, she is on board with claritin - just not ice. The fact that they don't give much to chemo therapy patients is sort of surprising for a top 5 cancer center in the states. I might be lucky if I could get some one from integrative therapy to do acupuncture during infusion.
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Acupuncture would be very nice....
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Thank you for the welcome and the info on Phil's. My BFF actually did if for me earlier
I have so much to read through since this thread was started, I am considering taking my laptop with me so I can read it all. I really should be sleeping, but my husband and I both woke up awhile ago and I am still up. I am on nothing but water since I have PET/CT at 0600 and I have heartburn or something going on. I have an appointment to donate my hair on Friday. I just thought it might be easier if I wasn't losing my long hair, maybe it will help.
Thanks again. Will update later after my scan and the party in the chemo room.
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Magic mouthwash truly is magical! I was doing salt water rinses, Biotene toothpaste with super soft tooth brush, no floss, water pik on low, Biotene mouth wash, and ice chips during infusion to ward off the chemo mouth sores and I had no mouth problems. Then I woke up the morning after the ER with swollen and painful throat and tongue and huge canker sores. Hard to even swallow water. I don't know if it was due to the really strong antibiotic they gave me or just a coincidence. But the doctor called in the magic mouthwash to a compounding pharmacy and I can now eat and drink again, after just one rinse! I am truly grateful for magic mouthwash! I'm day 7 post first infusion,by the way.
Take care everyone!
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Oh wow Lisbeth, that is awful. I am glad the magic mouth wash helped you out so much.
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smilethrupain- My MO has the same stance on icing (cold caps, hands, feet). She said there is no substantiated studies to show their efficacy. Her concern is that since it prevents the chemo from getting into the iced areas that it's a risk that a cancer cell is missed. I agreed with her. She did recommend the ice chips during Taxotere and our center did provide ice, but just in case I brought a bag of crushed ice chips with me in a cooler. She prescribed claritin and motrin for bone pain. She advised no motrin except following my nuelasta pod then back to tylenol only. Which really sucks because I have one heck of a headache right now and tylenol doesn't phase them. Where are you located to be next to a top five center? If my husband were still active duty I would be getting treatment at the Mayo Clinic in Jacksonville, FL. However, when he retired we moved back to AL to take care of my aging parents and there are no top notch facilities here. With that said, I am pleased with my care and my doctors do seem very knowledgeable and current with everything.
AngelaKS- I hope all goes well and you get some rest!
LisbethS-Thanks for the tip about magic mouthwash! I hope I do not need it, but my throat is already scratchy feeling. Insomnia is kicking in, too-I've been up since 4 am. Did you take nuelasta? I'm just curious how long the bone pain lasts..
lmnecken- thank you for the good vibes. No nausea at all so far. I started zofran last night. I have had an upset stomach, so you will be running to the bathroom if you're like me just not for vomiting. I am very fortunate that my company pays disability (I never thought I'd need it), so I am out of work until 21 days after my last chemo treatment. I do intend to work through radiation. I will have missed over 5 months, but my boss is insistent that I am his top performer and he wants me at 100% before I come back. Everyone at the center said day 3 is hardest. I will you keep you posted.
Stay strong, stay positive, and keep fighting!
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I woke up this morning, the day after my first infusion, with a funny feeling in my abdomen. I managed to avoid morning sickness when I was pregnant by eating a couple of saltines when I had that feeling so that's what I did and now I feel fine. I had a normal bowel movement (sorry for the TMI) and now I'm contemplating going for a short run while I still have steroids running through my system.
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ACS74, I'm in MA. Thanks for the note. I think most of the studies with cold capping (that I managed to read since yesterday) are from Europe and they measure the efficacy on preventing complete hair loss. And I think there is enough evidence that they work more than 50% of the time. I've been thinking (also since yesterday) about the less than 1% risk of scalp mets with cold cap... Because of my oncotype being close to high risk, I'm choosing to do chemo - to get 4-8% possible reduction in risk. I came to the conclusion that to me, every single % matters. So, it's a hard choice.
I don't have great hair to begin with, and I've been shedding a lot since surgery. My MO said that I need to talk to a scalp dermatologist who specialized in stress hair loss.
What cold capping won't help with is my eye brows and eyelashes. And if they are gone, that would be hard - to my kids I'll look sick/different. I have big dark brown eyes with defined dark eyebrows and very long eye lashes... No wig for that. I'm rambling now - broke down in MO's office yesterday because I think the reality of the next 3 months is finally setting in.
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smilethrupain, I noticed that after your post about not cold capping, a single user bumped three old threads about successful cold capping. If I hadn't already decided it wasn't worth the hassle and expense, that kind of passive aggressive behaviour would have decided for me. And I can tell you that in my very busy chemo room with 30+ chairs coming and going while I was there for nearly 4 hours with my first time slow drip, NOBODY had cold caps or mittens or socks.
With this rant, I managed to avoid going on a run.
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lmenken - Yes, I started chemo last week and tamoxifen last night. You could always ask your oncologist what he/she thinks about starting hormone therapy right away but you should know that it would be against standard protocol, which is to start hormone treatments after the completion of other active treatments. My cancer is 100% estrogen receptor positive and at a more advanced stage than yours. I think my MO wants to throw all available guns at it right away. Side effects are expected to be increased by doing them at the same time as well. Finally, I did look for medical studies on the timing of starting hormone treatment. You should feel reassured that the studies that have been done seem to indicate the starting hormone treatment after completion of other treatment is at least as good, and sometimes shown as marginally better, than starting them concurrently.
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Hi Everyone! I am joining this forum/party as I start chemo on 9/20:) So many things going through my head for the past few weeks....shock and then zen. We can do this, and we shall! I BMX on 8/19 and immediately experienced dysgeusia which is not so much the metalic taste but rather everything simply tasted off/gross. Unexpected outcome and lasted for 2 weeks. Hoping I don't experience it again once chemo starts.
I'm having my chemo class next week and have been told it'll take a couple of hours.
My MO suggested acupuncture and is totally open to my using medical marijuana for nausea. Anyone else considering the latter? Or am I just radical:)
Day before I had my second mammogram/biopsy I cut 14 inches off of my hair. Somehow I just knew it was going to be cancer. So I still have shoulder length hair. Going to shave it off with the help of my 16 year old twin daughters, 12 year old son and my husband. My girls are artists so I have asked them to decorate my new "canvas" with henna designs. I'll think of other things they can do as well.
Has anyone had a bra burning party? I have told my friends about it, and am having one on Oct.16, the Blood Moon or Huntress Moon which I think is appropriate, right? We are hunting down this cancer and eradicating it from our bodies!!!! A bonfire mid-October in Maine should be a fun thing...as long as there is no snow.
That's all for now. I'll work on figuring out how to put all my info down for the next post. Thinking good thoughts and sending healing light to all of you!
PEACE!
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smilethrupain- I don't doubt it works, in some cases. In my case, I didn't go through a bilateral mastectomy to rid my body of this to miss one cell because I chose to save my hair. Mind you, I absolutely dread it. I cry every time I think about losing it. Chopping mine all off a few days ago has helped a little. When/If it falls out it won't be a twenty plus inch clump falling out now. The ACS offers some great makeup classes to teach you how to fill in your brows. Since you seem to be in a more metropolitan area it may be convenient for you to attend. My nearest class is two hours away. Thankfully, one of my co-workers is a former make-up artist so I'm hoping she'll have some tips for me. We all break down, we all have not so strong moments. Don't be afraid to let it all out, you will be stronger for it in the end. You've got this!
Bagsharon- I saw 40+ people yesterday as well and not one person used ice anywhere. In fact they looked at me a little strange that I kept popping ice cubes in my mouth. I say to each their own. It's our body and we must do what we feel is right for ourselves.
I hope everyone has a great SE free day. Fight strong!
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