Just told I am facing chemo soon
Well I met with the surgeon yesterday and I found out I am stage 2 her+ . Chemo first and it may start in 2 weeks (yikes). He said they could potentially melt the tumor so surgery won't be as bad. I liked this surgeon-he made me feel completely at ease-and don't feel the need to shop around, but should I??
I feel overwhelmed--there is so much to do and plan for in such a short time. Wig/scarf shopping, cold caps, cutting hair before starting. Can someone offer any advice? Do cold caps work and or is it more trouble than its worth ? Clothes I should wear?
Also my hubby gave me a massage for valentines day. Should I try to squeeze that in before or would it benefit me during chemo?
Comments
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get that massage in pronto! you can't have them during chemo. releases all the toxins.. chemo isn't what it was long ago. lots of drugs to combate the side effects. you'll get herceptin-I get it now. no side effects from it. makes my mouth taste funny for day
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You can get one wig for free from the American Cancer Society. I am told that you will start losing your hair about two weeks into chemo, so wigs and scarfs are not something you need to do immediately.
If you found a surgeon you are comfortable with, then I would stick with them. Go with your gut...
Best of luck!!
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Lovemyboysandlabs--- Keep breathing..... take some deep calming breaths and try not to get overwhelmed. I know it isn't easy because I have travelled this path two years ago. I do understand. You do have time to get yourself prepped and ready for chemo. Here is the link to the Chemo Discussion Forum Thread that has links for Newbies ... http://community.breastcancer.org/forum/69/topic/785189?page=1#idx_1
Moderators wrote:
The main Breastcancer.org site has extensive information about Chemotherapy Treatment, including:
- How Chemotherapy Works
- Who Gets Chemotherapy?
- Chemotherapy: What to Expect
- Managing Chemotherapy Side Effects
There's also some great tips and practical advice on the following discussion board threads:
- Tips for getting through chemotherapy
- More Tips (and a Shopping List) for Getting Through Chemo
- PORT PLACEMENT: Detailed description of process
- Head Covering Options for Hair Loss
- wig advice
- Cold Cap Users Past and Present, to Save Hair
- Hair Hair Hair -- Another Question
- Taxotere, Carboplatin and Herceptin
There you will find the "shopping list". I did not purchase everything on that list but I did purchase items that I could keep at home and have on hand in the event I needed them asap. It also depends upon your infusion center. Fortunately, mine had everything one could think of having with them----- snacks, water, ice, juice, coffee, and warm blankets. Because it is a major hospital cancer center and connected with other medical buildings, it was great to be able to have my husband get lunch for the both of us when I had my infusions. Yes, you can eat as well as drink while having your infusions. If you need to go use the restroom and hooked up to your IV, just ask the infusion nurse to unplug your IV pole from the electrical socket and head down to the restroom with the pole in tow. ( BTW I hope this isn't too much information--- there is a practical side to chemo infusions.... lol)
Please try to remember that you are not alone here. You may want to join the Feb. 2014 Chemo thread (http://community.breastcancer.org/topic_post?forum_id=69&id=817350&page=1) to get some support from those who are also going through chemo at the same time you are. Please feel free to private message me if you want since I know you have a lot of questions. You will find that having answers to questions on your mind will help lessen some of the fear and anxiety that one always has starting out with treatment.
HUGS!!!!
- How Chemotherapy Works
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thank you so much for all that great information!
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human hair wig for sure or can you get by with synthetic? I saw a cute one with a headband but it wasn't human hair.
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I decided against cold caps - too much trouble and expense. I bought two mid priced synthetic wigs that got me through 4 months of chemo. I had a work wig and a sassy weekend wig. I got my hair styled to match my wig a week or so before starting chemo. When my hair started falling out I had my husband shave it off. I know of women who have parties to mark this event. Also there are hairdressers who will shave heads for free after hours. It really wasn't a big deal.
I teach high school and no one knew when I started wearing my wig except one student who just noticed the color wasn't exactly matched. He thought I colored my hair. In fact, I got a few complements from strangers along the way. The wigs were really easy to care for and not at all uncomfortable. I even led a beginner's yoga class for my students wearing the wig. As an extra benefit, I had an extra 30 minutes every morning while getting ready for work since I didn't have to fuss with my hair. No shampooing, conditioning, drying or styling. At home I wore scarves and caps. I was advised not to buy a human hair wig because of the expense and amount of care needed. However, they can be styled which is a plus.
Good luck! It certainly is a journey!
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Lovemyboys... if you're considering cold caps please click on the link that Melrosemelr provided. The cold cap thread is very active with women who have used or are currently using the caps. You can ask lots of questions and decide for yourself whether they might be worth it for you. I used them with great results.
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Hi Love,
It all goes really fast once they get going doesn't it? In a way a lot of women are really happy about that - it moves you from a place where you are just inactively waiting - to one where you are proactively doing something. I'm going to try to answer a few of your questions.
finding a new surgeon - for Her2+ cancer, it sounds like your surgeon is following the standard protocol. I guess the question to ask yourself is what do you think you could find in a different surgeon that would make you switch? When it comes down to the actual surgery, your plastic surgeon will be (or is likely to be depending on your reconstruction options and whether you have a lumpectomy or MX) more 'important' of a decision.
cold caps - there's a whole thread on them, know that some oncologists do not want you using them (the basic notion being that if you are making the chemo ineffective in the scalp area, then it's ineffective on any cancer cells that might be in that area as well). If it's something you want to consider take a look at that thread.Wigs - I have heard that unless you know a lot about them, you do not want human hair - they are expensive, require a lot of care, and respond to weather in the same way that human hair does (ie. frizzes when it rains). If you find something in your price range, and you like it, go for it and you can do a mix of things. One thing you might want to know ahead - some women cut and save their own hair and attach it to hats or make it into a ponytail that is put through a ball cap. As far as cutting your hair - I had my dad cut it off once it started falling out. You'll know it when it starts to fall out, I wanted to keep it as long as I could.
Know that chemo really 'hits' everybody differently - you might want to think about 'what if it does hit me really hard' - do I have things set up in a way that's comfortable for me if I am 'chemosick'?
There is a world of good advice here - look at the left hand side of the screen and look under the forums - that will give you a good idea of what threads have answers to the questions you're asking. & If you ask them on those threads, you'll get responses from people who know a lot about whatever topic it is you are asking about.Also - big thing - know that we'll be here for you if you ever need to vent, cry, laugh about something that nobody else would understand,etc.
((hugs)) -
LMB, you will be fine! Check out the links above from Melrose. And jump into the new chemo Feb link too. It is so good to have others with you when you start showing chemo side effects. Some people had a lot most had a few and a few sailed through wondering what all the fuss was! You could be one of the lucky ones.
Probably the best advice is drink fluids 64 ounces a day- Uncaffeineated. This will flush the chemo out as fast as possible. The other advice is most people have constipation from the chemo. Some have diarrhea. I had the Big D. It is what it is. You will know after the first one which way you tend to go. (No pun intended!) LOL but at least take a stool softener the first gime. It won't interfere if you have the D but it will help if you have C.
I was on chemo 2 years ago tomorrow. It is not easy but you'll make it through. Feel free to contact me if you have questions. The people in your month will be your new friends, my Feb. Group are still in touch! Much love!
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I got three synthetic wigs. Everyone loves them. I change up my hair and styles. And most just think I got my hair cut! Real is super duper expensive too.
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thanks so much for the advice ladies!! It's all coming so fast. Has anyone ordered from headcovers.com? They have a lot of cute things, I actually forgot for a moment about it all being scary.
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Check out the Look Good Feel Good program through the American Cancer Society. They have a free make up session where you will be given a make up bags filled with goodies plus you can get a free wig if the program in your area has free wigs.
I know that the idea of hair loss can be undaunting and overwhelming. Some opt to shave their heads prior to chemo; while others opt not to do that. I had waist length hair at the time of diagnosis; a short bob when I had my UMX and a short short boy hair cut after my first round of chemo. I never shaved or buzzed my head because I wanted to see if all of my hair would really fall out ( kind of like a personal science experiment). I wore bandanas, wooly caps, baseball caps and hats I bought from Target, Charmin Charlies, Ross, TJMaxx/Marshalls. Although I received a free wig through the ACS, I never wore it. I have not had a hair cut since April 2012 and am lucky that my hair has returned evenly. No matter what you opt to do about your hair or hair coverings, there isn't a right way or a wrong way to handling this situation. The only the way is what makes you feel the most comfortable. No matter what, you are still beautiful.
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If you use ebay there are a number of sellers who make hats and pre-tied scarves for chemo patients. I bought a few from seller christine 4383 who was happy to make mine bigger to accommodate my large head. Also the ACS catalog TLC had nice hates and scarves to choose from. You can get a free head covering from an organization called GoodWishes.
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Thank you so much for all the information. It's overwhelming and this helps. A lot to consider.
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Unless you are VERY experienced with wig care - do not get a human hair wig! Taking care of them is not easy without experience. When I was a Master Cosmetologist years ago I did a fair amount of wig care and there is no way I would have gotten a human hair for when I did chemo. Yes I do have the experience/knowledge but there is no way I would have wanted to put the time AND energy into doing it. In today's world - there are many fantastic synthetic wigs that actually look more natural than human hair. They are also not time consuming.
I definitely Second going to a Look Good Feel Better class. Ask the Nurse Navigator at your Facility if they have them right there - if they don't call your local ACS they probablywill. My suggestion is to go to one before you start loosing hair (approx 2 weeks after first chemo) -I did. It made learning how to do brows easier when they 'left' as I had already gotten the feel of where to put/draw them on. You will be given a bag of all sorts of 'goodies' that have been all donated by BIG name companies. At least here, no . Bags are the same and are based on general skin color/tone but you can swap around among the other ladies there if you want. I got some pinkish eye shadow (I HATE pink) and would never use is but there was a lady there who loved the color and had gotten a color I would use - so we traded. A couple of others also did some trading.
The Nurse Navigator at your Facility may also have free wigs - mine did. I was given a real cute wig but it really wasn't me so I took it with me to the LGFB class and there was a lady there that it was PERFECT for so she went home with it and the next day I got a great wig from the lady who did the class. She had recently gotten in a box of wigs froma manufacturer and there was . wig - a frosted gypsy - that she thought she'd never find anyone for it - til she saw me. I went to her salon the next day and it was perfect - cut, length so similar to my hair (I could even pull it back in a 'ponytail' similar to how I usually have my hair) basically the only difference was the color. I'm weird, even at my age my hair is still are dark without grey as it ever was NATURALLY (genetic curse from Daddy's side of the family), and the wig was is frosted but I loved it. VA also bought me a wig so for it I went with a frosted short pixie so when the wind was blow in bad it was easier to keep in place on my head not having to chase it down the road.
The Facility also had a bunch of scarves/caps/ hats you could pick from when you wanted to or needed to. I made almost all my scaves - so easy and you can make them in different lengths and can find such neat material. Fleece is good for warmth. Hubby would often stop by the fabric stores and bring some interesting prints/materials home. I have to say some of the ones he brought home that I thought were shall we asy 'questionable' turned out to be the ones I liked the most.
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Massage: My oncologist said it was fine for me to have massages. During treatment, I had them twice a week (1 hour & 1 1/2 hour) during the weeks I had treatment and once a week on the "off" weeks (1 1/2 hour). That was nearly 10 years ago. One cancer clinic in our area even has a massage therapist on staff!
Surgeon: I didn't even consider a second opinion. My surgeon had done a breast biopsy for me 10 years prior to my diagnosis (different area) and I had full confidence in him. (Although I did ask around a bit to be sure he was as good as I thought he was.)
Medical Oncologist: Ditto for no second opinion. He was a personal friend of ours, and I knew about the care & concern he had about patients when he was on call & we were out (dinner, concert) with him & his wife. We both (plus hubby) discussed if we felt comfortable with this change in interpersonal dynamics. Best decision ever.
Hair Loss: I had my hair cut pretty short before chemo. When it started falling out, hubby shaved it off for me. It was still a shock - more so because I never knew I had a pointy cone head! (I had very thick hair - even when it was short you couldn't tell the shape of my head.) After a couple of days, though, "no hair days" didn't bother me. On the other hand, I didn't have to shave my legs or armpits for more than 6 months!
Wigs: I had four, but mostly wore two that became my favorites -- due to how natural they looked. One favorite was from the American Cancer Society, the other from www.tlcdirect.org (great site from the American Cancer society). The two I didn't wear much: one from a Merle Norman salon that also sold wigs (used my prescription for this, most expensive) and the other was from ? - can't remember, but it was one with headband meant for more active sporty pursuits. I found the Merle Norman one didn't look as real to me as my favorites. The sport wig was just plain uncomfortable, plus I ended up not needing anything for sports pursuits. I got a lot of compliments on my hair during that time, mostly from people who had no clue I was wearing wigs. They were all synthetic & very easy to care for. The one from ACS was in my natural hair color (except for the sexy blond streak), but in a totally different style from my own - ever. But it was kind of fun to be a different woman once in awhile! (Freaked my husband a little bit, LOL!) I donated all my wigs & wig forms back to the American Cancer Society when I was done.
Hats & headcovers: At home, I mostly kept my head covered because I was bald in the winter & got chilled easily. I bought several different little caps from www.tlcdirect.org , wearing different ones to match what I was wearing. I bought a couple of fleece caps at the sale table at an LLBean outlet near me, which were great when outside in the cold (but too hot indoors). I picked up a couple of other head covers -- bandanas & such for warmer weather. I donated all my caps & head covers to patients at my treatment facility - they had a section where items like this & books were available for the taking.
Makeup, etc.: I also endorse the ACS "Look Good, Feel Better" program. I didn't end up with makeup I used, but I learned a lot of good techniques before I lost eyebrows & my complexion got really pale. I normally am very heavily freckled -- and my freckles nearly disappeared! I also saw someone there who was about 1/2 way through chemo who didn't wear makeup or wig -- and I knew I didn't want to look like that if I could help it!
Side effects: Many side effects are easily manageable with medication. Be sure to tell your oncology team if you are having ANY problems, including heartburn, mouth sores, constipation, nausea, etc. They can get you the right treatment quickly & you will feel much better. Call them immediately - there is no reason for needless suffering! And of course, if you feel really ill or get a fever, they should know immediately.
Clothes to wear: Comfortable is best when you can do it. I was working part time during chemo & was sometimes dressed for the office. A blouse that unbuttons in the front is better for port access than something like a t-shirt. The nurse might only need to unbutton one or two buttons, so you're not really exposed. During infusion, you might was to wear socks - your feet might get cold. I also liked bringing my own fleece throw - the blankets they had at the clinic were those rough cotton ones that linted all over my clothes. I stretched out in the recliner, covered with my fleece & zonked out for an hour or two (helped by the benedryl they gave along with some of the chemo).
Additional: Talk to your surgeon about placement of a port for chemo infusion. I didn't know about this until my first chemo session, then got it put in a week or two later (outpt surgery). Some women get a PICC line instead, but that's a hassle because you always have to keep it dry (even showering). The port is implanted under the skin (just below collarbone) & feels like a flat bottle cap. Very happy with that decision. Makes receiving chemo much easier & saves the veins.
Do read all those threads Melrosemelrose directed you to. I wish I had known about this site when I was first faced with my diagnosis, but I didn't discover it until much later!
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I also used the pretied scarves for at home.......but I had four synthetic wigs (I bought a real hair one on the advice of a friend and didn't like it as much) that were easy to take care of.........and most people couldn't tell it wasn't my hair........do speak up if you are having problems..........and take good care of yourself....
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good luck with chemo. Many if us got through it with few side effects. I hope you do too. I also used cold caps with success. Feel free to PM me if you have questions or check out my blog.
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Lovemyboys,
I started chemo last Tuesday, 2nd time around with a bc diagnosis. I ordered all my scarves and hats from headcovers.com. They are quite pretty and very fast, efficient.
I have done chemo before, it sucks loosing your hair but it is only TEMPORARY! I am not a wig person and wore bandanas and hats when I did chemo in 2005/6. I got to a point where I said the hell with it and ditched all headcoverings, it sure was an eye opener for those that think that it can never happen to them!
I am doing the same thing this time around, not really a wig person.
Just wear comfy clothes to treatment.
All the best sweetie. You can do this and come out kickin cancer right in the ass!
Michele
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I am so touched by the messages, and the time you all took to respond. Thank you for such great information. You make me feel better for sure.
I am off to a Pet scan in about an hour, and I am very nervous. Not sure if it's because of the actual test, or what they may find out there that I don't even know about. I am also hungry with no caffeine and not much sleep, so a little agitated feeling right now.
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Hi Love,
Don't forget that you can always ask for anxiety med, my onc prescribed them immediately without my asking in part because he wanted me to try them before chemo - I guess that they are pretty much a given for the first chemo treatment. Anyway - many people use them before scans and such just because of the claustrophobia. Hope all goes well for you today - it's good that they are being thorough with the testing.
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Yeah I will be getting some of that to make me sleep. I have been doing great the past few days, but last night took a step back. Started looking at things online, which made me panic and cry. I have to fight the urge to visit Dr. Google! I fall asleep okay but wake up in the middle of the night with terrible thoughts--that this has spread all over, that I am going to die, etc. I know this is normal thinking for someone newly diagnosed (so I've been told), but quite frankly it sucks. I need to focus on the survivor stories when I have an urge to read...
The Pet Scan was okay, I wish I could have slept in there but just couldn't. I will be happy to know what that looks like later this week, so I can stop my mind going.
Hugs everyone
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Lovemyboysandlabs- Keep breathing and take those deep calming breaths. Please do yourself a favor.... No more Dr. Google!!!! The information that Dr. Google provides can be out of date, inaccurate and may not apply to your situation at all. You need to stick to the facts about your situation and not become overwhelmed by the numerous sites that Dr. Google is on. There is no harm in you reading about breast cancer on the main BCO.org website because there is good information there. One does need to know what is ahead of her here so one can ask her oncologist, breast surgeon, and other doctors questions during appointments. There is a huge learning curve in the beginning.... you want to know everything and yet you don't want to know because you may be afraid. Take this time to take in enough information to get you through the preliminary steps of treatment. Once you know exactly what your treatment plan is, you can read about the upcoming phase of treatment and know what to expect. It is one day at a time..... one step at a time here.
FYI: Two years ago today, I received that phone call from the breast surgeon.... sorry but you have breast cancer. From that day forward, I chose to do my best to get healthy and to move forward with a positive attitude. Yes, I have a rare form of cancer and have had surgeries, chemo and participated in a Herceptin clinical trial and am now on Tamoxifen. It is possible to move forward through all of this and feel good again... body and mind. So anytime, you get down or anxious about being here.... just know that you are not alone and you will find comfort and support here.
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