Chemo Starting September 2018
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Love your hair Heather!tigerlily, try Tylenol next and see if that helps.
Luvbug, I would go to ER. It sounds pretty bad.
Second round today. Bitter sweet. 50% done. I cried a little thinking of all the side effects that I am going to endure.. I can only hope that I will have an easier time this time around.
Oh two things I learned from my MO. 1. I shouldn't drink 4 litters of water a day, 2 litters is sufficient (because of losing electrolytes). But I will drink 3 litter for now! 2. I need to get myself off from Xanax. It is addictive, and if I am not experiencing anxiety then I should get off from it. She suggested melatonin or Benadryl for sleep. So I am not taking Xanax for sleep but melatonin, we will see how that works out to me. Have a goodnight to all the warrior women out there.
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BeingPositive - If there're many people in your community, I'd suggest having your husband (or few of your close friends in the community) break the news to others. There will be inevitable pity looks, but you may also hear encouraging stories and similar experiences.
Luvbngma - I thought I might have a possibility of getting UTI and my MO suggested me to go see my PCP right away. Thankfully it came back negative. UrgentCare can be good for strep throat, but I'm not sure about this type of infection.
Tigerlily - Sorry to hear about your bone pain, so the acupuncture and massage during infusion didn’t help?
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Heather! Great haircut!
JNKK you guys are adorable.
Tigerlily i"m so sorry you are having pain! and Luvbngma I don't know what to do but i hope you feel better soon.
Oh hey.. whats that on my monitor.. oh its hair. Oh hey, whats that on my keyboard.. also hair. wow its in the sink too..
Me and the cats, shedding together
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Hi All. I am from Canada, and am participating in a Run for the Cure on Sunday. In other (upsetting but) exciting news, this is also being launched in Canada in October, and I am determined to spread the word. Dense breasts are the reason I am in this group, with an 'invisible' primary tumour that likely has been stealthily setting up shop in my body for over 6 years...despite annual clear mammos. I had my first chemo last week. Have a look, and please spread the word about dense breasts to your family and friends.
#TellMe – HEALTH AUTHORITIES AREN'T TELLING WOMEN THEY HAVE DENSE BREASTS PUTTING THEM AT GREATER RISK FOR BREAST CANCER AND A DELAYED DIAGNOSIS
24 September 2018 – Toronto – A national online campaign to help reduce the number of Canadian women being diagnosed with advanced stage breast cancer is officially being launched this October for Breast Cancer Awareness Month. #TellMe is being driven by Dense Breasts Canada (DBC), an organization dedicated to raising awareness, education and advocacy around women being informed of their breast density, the associated breast cancer risks, and having more options to support early-stage cancer detection.
Health authorities across Canada collect a patient's density as assessed by a radiologist reading the mammogram but, in most cases, do not share that information with the GP or the patient. And mammograms miss up to 50% of breast cancers in the densest breasts. The #TellMe campaign is asking health authorities to add one line to the letters they already send to women after their mammogram, notifying women of their density category and its associated risks with breast cancer.
Ontario only recognizes women in the highest density category – those with over 75% breast density. That ignores a million women in the 50-75% category who are at significant risk for breast cancer.
Dense Breast Canada's Medical Advisor, Dr. Paula Gordon, a clinical professor of Radiology at UBC and Medical Director of the Breast Program at BC Women's Hospital, said it is "patronizing" not to notify women of this risk factor as doctors regularly disclose other risk factors to their patients such as blood pressure and cholesterol. "Having dense breasts is a greater risk factor than having a family history of breast cancer. By the time cancer is detected, it is often larger, more aggressive and at a later stage in women with dense breasts. Women with dense breasts should consider supplemental screening, such as an ultrasound. Early detection saves lives," Gordon said.
Women who know they have dense breasts can also be more vigilant about self-exam and mitigate lifestyle risk factors. The #TellMe campaign strives to build a community and voice for women, where they can engage and support one another online in a bid to raise awareness, share stories, answer questions and concerns, and encourage each other to take action to ensure they become aware of their own breast density.
"While we completely support the concept of Breast Cancer Awareness Month," said Jennie Dale, Co-Founder of Dense Breasts Canada, "a crucial piece of the puzzle is missing. For years, breast density has been known, but intentionally overlooked by health authorities. We frequently hear from women with breast cancer, saying they wish they had known about the risks of dense breasts. When women are kept in the dark about their breast density, they are denied a chance to be proactive to reduce their cancer risk. We're seeking to do something about this through our #TellMe campaign by building and empowering a community of women committed to change."
Last week, British Columbia announced they would begin notifying women of their breast density in their post-mammogram results letters, making BC the first province in Canada to take this important step. DBC would like Ontario to step up and be number two.
Case study/interview opportunity
Ontario resident and breast cancer survivor, Ann Hill, was first made aware that she had dense breasts after discovering a lump in her breast at age 36. "The doctor told me that the lump was not cancer, but that I did have dense breasts." Eventually, the lump went away on its own, but no further testing was done nor was Ann told any of the implications or risk factors associated with having dense breasts.
Eighteen years later, she discovered a new lump in the same breast. "I had just had a clear mammogram six months earlier, so I thought it was another transient lump." But an ultrasound revealed a cancerous tumour and cancer in at least one lymph node. "I was stunned and thought, 'how could this be?' I went from an all-clear mammogram to Stage 3 cancer in six months."
Her surgeon told Ann that the cancer had likely been there for quite a while. He explained that dense breast tissue and cancerous tumours both show as white on a mammogram, creating a camouflage effect. The mammogram done six months earlier gave not only a false negative but also a false sense of security for Ann.
"After my first surgery (a lumpectomy), I had three months of dense-dose chemotherapy. Within two weeks of starting chemotherapy, another malignant lymph node was discovered. A second surgery was arranged, this time to remove both breasts and seventeen more lymph nodes. After that, I went through twenty-five rounds of daily radiation."
During her harrowing cancer journey, Ann met Jennie Dale, co-founder of Dense Breasts Canada, and began to advocate for breast density awareness and notification.
To learn more, visit www.densebreastscanada.ca
For more stories around women impacted by breast density, watch this video.
CONTACTS:
Jennie Dale
Co-founder, Dense Breasts Canada
416-809-7976
Dr. Paula Gordon
Clinical Professor, Department of Radiology, UBC
Medical Advisor for DBC
604-644-1597
Ann Hill
Breast cancer survivor
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pcranky - I love your cat pictures! And yeah, hair everywhere...
In the dishwasher! On the toilet seat! Although I don't have much more!
Maybe they'll make a tumbleweed, and roll across the floor!Elizabeth - I can't agree more on the lack of awareness on the higher risks of dense breasts. My annual mammo last year did say I have extremely dense breasts, but I had no idea what that really meant. On the day I was diagnosed via biopsy, the mammo still showed nothing. I've been telling all my friends to do regular self-exam especially if they also have dense breasts.
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BrinkofEternity and Elizabeth9 Yes, I also had "dense breasts" all my life, without really being told that it upped my chances for bc. Really, it's very important that women know that. In my case, my ob/gyn had dropped the ball on ordering my mammograms, so I missed a couple of years before I realized it. I wouldn't have let that happen if I'd really been aware that I was at risk. Thank God I pestered them to make the appointment this year!
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HeatherPsalm34-4 I love your haircut! I got mine buzzed a couple of days ago and posted a picture on Facebook. My 23 yo daughter says I look "edgy!"
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I am also in the dense breast club. I had a mammogram 5 years for a lump in the same breast that was declared a fibroadenoma. The report noted that I had dense breasts, but no one mentioned that it was a risk factor or that anything warranted any follow up. Screening mammograms don't start here until 45, so I was still 3 years away when I found the lump that turned out to be cancer. Because of my age and past history (?!) they put me on the slow boat referral system so it was another 6 months before I was seen. And the tumour didn't show on the mammo, only ultrasound.
In happier news, I went back to work yesterday and to my surprise quite enjoyed it. I think it's just nice to be doing a "normal," non-cancer thing.
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Hello all, I too was diagnosed with dense breasts and did have a core biopsy about three or four years ago. I was told that I was at higher risk but like some of the others here I did have to pester my PCP to get referrals for an annual mammogram. Miraculously I switched from my HMO to a PPO last January. With what’s going on now I am so very glad I did.
DAY6, round one for me. Feeling like I’m getting to the other side. I’m going to enjoy it as long as I can. Does anyone have any suggestions on prevention of mouth sores? I’ve been doing the baking soda salt rinse as well as the Biotene. My mouth is still feeling bad, but not terrible yet. Is there a lip moisturizer that works well - typically I use Vaseline or straight up Chapstick, but it doesn’t seem to be doing the trick. I hate to reinvent the wheel when so many of you have walked down this path before me.
Love all the hairdos and kitties
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I started chemo last week and by day 4 I was so sick. Days 4 - 6 was awful. I never vomited but sure felt like I had a bad case of the flu. I was so weak It took tremendous effort just to take a shower or get dress. I am suppose to take 4 treatments 3 weeks a part. I am scared to death of my next treatment. Being so sick made me so depressed too.
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Vlynn. Sorry to hear you are having such a hard time.
Please call your MO for advice on how to manage the worst of your side effects. They might be able to tweak some things to help.
Some people have found exercise really helps with the weakness. Even if its just a walk. Even if the idea of doing it is horrible.
And make sure you are drinking enough.
Hope round 2 is better!
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hbluv- I too started chemo the same day as you, my cocktail is TAC. I felt fine after chemo just a little tired thankfully no nausea. The following week I had to go back 3 days in a row for my Zarxio injections and my god did I feel like crap. Worse than when i had chemo! My back hurt the most. After about 3 days I felt better, my nurse told me to take some Claritin and Tylenol for pain. It worked for me. Now, I’m dealing with the hair loss just as I started feeling better.
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Hi all. I spoke to the NP and she said that it is rare I having this pain and it could be the Taxotere and not the neulasta. She said to alternate Advil and Tylenol. Ugh but doing it. I took a illicit tumeric for a couple of days (told to stop supplement form during no chemo) but it didn’t not help so drugs it is. @Brink, the massage/acupuncture during treatment and acupuncture today have not helped helped. Yoga does! But I have to work and cannot do it all day. I am kind if down on acupuncture but it is helping me relax. And maybe it would be worse.
@ m-and-m-37, I am using drunk elepant’s lippe and coconut oil. Totally fine. I also swish occasionally with the coconut oil. No mouth issues at all this round. And that is after making and eating chili that has tomatoes 2 days in a row.
On a positive note, I have a large sun spot on my face and realized it is much lighter. I am being fastidious with my skin care, including vitamin C and glycolic serums and an herbal oil, Vintner’s Daughter (total chemo brain purchase). Not sure which one it is but my skin looks great despite my hollowed our eyes.
Bought a ton more chemo beanies. Trying to embrace it. I suppose I will be beanie-headed until Christmas.
Heather, love the cut
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@JNKK, I just noticed we are similar diagnosis and you had radiation before chemo? Just curious the reason. I thought it was more common to do chemo first and that is what I am doing. Thx
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Tigerlily, when I met with my team of doctor, they were sure that I won’t need chemo. I expected that my oncologist will send my tumor for oncotype testing after the surgery. When I met with my surgeon, I was surprised to find out that my oncologist didn’t send it out for testing, so for some reason I pushed him to get the test done (as much as i didn’t want chemo). Well, fast forward to after 20 rounds of radiation, I finally met with my oncologist, that’s when he told me that my result came back in the gray area and that I need chemo. When i asked for a second opinion, he told me to switch to another doctor. I am glad that I did! I never liked him for I hated his bad bed side manner. Oh did I mention that he wanted to do FAC+T?! The newest drugs are AC+T without the F!! So that’s my story.
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I’m prepping for AC #2 tomorrow. I’ve been struck by how differently we all react to very similar input. Hindsight, it could be that what I blamed on Lyrica was really a reaction to steroids. I plan to avoid the steroid-based antinausea if MO agrees. (And maybe if he doesn’t) The first few days were notable for low heart, low blood pressure, consipatioon and bloating, culminating in day five where I was completely freaked out, either Lyrica or steroids. My other concern is day 8-10 bone pain. Now that I know it can be delayed, I will be prepared (I hope).
Even though I shaved my head, the hair is still firmly in place. For the moment, I prefer being a chick with a shaved head vs. a cancer patient with a head cover. That may change when I become a cue ball; TBD. Regardless, after tomorrow, I will be 25% complete with chemo.
This, too, shall pass. ❤️
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Piksie, I hope round 2 is easier on you! And thank you for the warning about delayed bone pain — I’ve got it, too, and would have worried about what was wrong with me if I hadn’t read your earlier post.
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Tigerlily - It’s a bummer massage and acupuncture don’t help. I’m considering acupuncture if my neuropathy gets worse. Will let everyone know if it helps.
m-and-m37 - on top of mouth rinses I also bought SLS-free (Sodium Lauryl Sulfate) toothpaste because I read somewhere SLS can cause/worsen mouth sores. You can get them from Trader Joe's or Whole Foods. I don't know if it really helps but so far so good.
On a side note, a fellow BC survivor friend of mine recommended me to check out apps like ThinkDirty which list out all potentially harmful chemicals in everyday products. Especially with hair loss and some rashes, I've been trying to use more natural and chemical-free products to minimize my SEs.
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JNKK and Heather, lovely photos. All of you are so inspirational, to see you smiling through this fight brings lot of hope.
BrinkOfEternity, thanks for the suggestion. I might take a leap of faith in humanity and share the news with neighbours. Yday had first tound of TC and though had planned so that we can be back before son is back from school, it wasnt done in time and had to request help from neighbour friend. I know at core all humans are good at heart, but just worrried about that pity.
It is just the next day of chemo, thankfully not much SE as if now. But scared for whats in store for days 3-7. I am vegeterian so also looking at helthy food options. Going through some of the links And saw that smoothies work. But the sheet received from doc says avoid raw veggies and fruits. So bit confused. And should acupuncture be started only if u have neuropathy issues or doesit help in avoiding any other SE?
m-and-m37, along with biotin mouthwash, i started using biotin fluoride paste even before chemo. And tried putting ice chips in mouth during chemo. As of now it seems ok, but it is just secod day. Wishing you best to overcome the mouth sore challenge.
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To those of you dealing with mouth sores, did they have you chew on ice cubes during your infusion? I did for about 20 mins during one of the drugs, I don’t remember which. Luckily, I have not had any mouth issues.
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my infusion nurse never suggested this, but I am definitely going to try it on Friday! Thanks you
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Had my 2nd AC on Monday-a quick 2 hour infusion. I have the weird feeling in my eyes the first day, too. Yesterday I was hopped up on steroids and had a very productive day, but things tasted weird. I’m considering reducing the steroid dose as well, maybe just 1 of the 2 pills. I asked my doc about the neulasta since I had zero side effects perhaps with the help of loratadine. She said that people who get the onpro generally have fewer side effects bc it is released over 45 minutes versus the speed of a standard single injection. She didn’t get into the pharmacokinetics of it but I thought I’d share her comment. I think the zofran is a chief contributor to constipation-I take senokot s every night before bed and have been able to stay regular thus far. I don’t want to stray from the regimen too much since it worked so well last session but I’d prefer fewer drugs in my system if possible! In other news I wore my wig out for the first time today. It’s weird. But I feel more like myself in it than in the caps, in public anyway. Still weepy about this part, but so thankful for feeling good that I try to push it to the back of my mind.
This page is such a godsend-it lifts me up every time! Here is a pic of my Sophie-turns 18 in October
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Hello Sophie Princess kitty.
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BeingPositive - They did do some studies that conclude acupuncture does help with neuropathy, and I heard it can help with joint pain as well. That's about all I've heard so far.
I didn’t hear anything about avoiding raw vegetables and fruit. Maybe you should double-check with the doctor? I’ve been doing juicing and smoothies everyday...KK2018 - Hi Sophie!
Just ordered a baseball cap with wig attached. Read some good reviews about it so hopefully this will work for me.
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For those with mouth sores, I read elsewhere on this site that you can mix a teaspoon of maalox with a teaspoon of benedryl and just swish it around and spit it out. It was such a weird combo that it stuck with me, but it's worth a search to confirm. I think it was on the big "Chemo tips" thread.
Loving the cat pictures. I will have to post one of my baby who predates my husband and kids, and has recently been diagnosed with diabetes so is having almost as much treatment as me (but somehow much more expensive!).
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Just to consider - I assumed I had mouth sores my last round and when I called MO, he said it was thrush and prescribed diflucan pill for me. That knocked it right out.
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My centre recommends drinking and swishing with club soda to prevent moith sores. I am on day 12 and have absolutely no problem with mouth sores
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@JNKK, sorry you had to go through that. Your MO sounded like a real treat. Glad you are in a better place!
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Thanks for all the tips on mouth sores ladies. I’m going to give The wonderful suggestions a try. I did have some minor dental issues prior to my cancer diagnosis, maybe that is part of the issue.
Wanderweg had you ever had thrush before or was it a straight up side effect of the chemo? Things seem to have stabilized a bit today, but there is no given this situation, I know. Hopefully I am past the constipation issue. That was no joke and I do agree with you ladies that it’s better to be a little more proactive. I have included a glass of warm prune juice in the morning. It is truly disgusting but it does seem to help.
DAY6 seems to be a little better for me. Woke up and had a great night sleep. Still having a few problems with my eyes but they seem to be focusing a little bit more. I will take it! It’s amazing how this disease makes Me feel so appreciative of little things that I used to take for granted.
I did get the recommendation to stay away from fresh fruits and vegetables from my MO. They talked a lot about bacteria on food, fruits and veggies in particular, they also recommended to stay away from eating any food that is not served hot especially when you’re eating out. My taste buds have been very different. I’m craving really bland things like scrambled eggs and vanilla ice cream.
This is a wonderful page. I feel so much better every time I read it. Best toeveryone
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MandM, I've never had thrush, it definitely had to be a reaction to the chemo. Both my mouth and throat were sore, but mostly my mouth.
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