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SheenaH
@sheenah

Posts: 3
Joined: Jun 06, 2016

Recently diagnosed and wondering what to expect...

Posted by @sheenah, Jun 6, 2016

Hello, my name is Sheena and I was recently (2 weeks ago) diagnosed with Stage II B ER/PR/HER 2 positive breast cancer. PET scan shows that is confined to 1 breast & a few axillary lymph nodes and I had/have absolutely zero constitutional symptoms. Found a hard lump that was rapidly growing & some localized skin changes which prompted me going in to my Doctor. I am exceedingly optimistic about my prognosis, as is my entire treatment team, and I am here to hopefully gather any advice or insight on things I can do for myself to minimize the effects of chemo, which I start on Tuesday. I wasenvisioning projectile vomiting, being so fatigued I can barely stand, hair falling out, etc but my Oncologist assures me that it won’t be quite as dramatic as it is in my head. Any chemo veterans care to shake their stories with an amateur? Things you experienced & what I should brace myself for? Thanks in advance!

REPLY

Welcome @sheenah. I admire your outlook and applaud you for seeking information. For many people knowledge is power. I, too, like to hear from other people about their experience in addition to reading the information given out by the medical team. You can get many tips on how to prepare, what is normal and find people who just “get it”. Keep in mind, of course, everyone is different. Even another woman with the same type of breast cancer getting the same chemo combination may react differently than you will.

Let me start by introducing you to a few members. Please meet @luladavis @martid @brandysands @tinalove @leemiller @cautiousoptimism @kathleensunshineobrien @trainwreck54 @sailtown @jomama @fundytide. There are many more. Have you seen the discussions on the Breast Cancer group? https://connect.mayoclinic.org/group/breast-cancer/?tab=discussions

What type of chemotherapy will you be getting @sheenah?

Welcome and so sorry you have reason to be here. It does make a huge difference which treatment program you are on. I was not triple positive, I was Er/PR- HER2+ ; I was on carboplatin, taxotere and Herceptin – the TC every 21 days for 4 months; the Herceptin every week for 4 months then every 21 days for 8 months.
If they have a chemo class, be sure to go. It will be a big help. The nausea meds they have now are pretty good, just stay ahead of it. Many people kind of breeze thru it with no major issues; others have a very hard time. From what I understand and have experienced, breast cancer chemo is one of the harder ones. I am currently going thru chemo for Stage IV colon cancer with mets to my liver. It is physically easier although more drugs and more often. Breast Cancer.org has a good site and can answer a lot of questions. There are also some great groups on Facebook.
Feel free to ask anything; I can tell you what MY experience was, which may or may not relate to what you will deal with. You will get used to the phrase “everyone is different” – I have and still do hear it a lot

@colleenyoung

Welcome @sheenah. I admire your outlook and applaud you for seeking information. For many people knowledge is power. I, too, like to hear from other people about their experience in addition to reading the information given out by the medical team. You can get many tips on how to prepare, what is normal and find people who just “get it”. Keep in mind, of course, everyone is different. Even another woman with the same type of breast cancer getting the same chemo combination may react differently than you will.

Let me start by introducing you to a few members. Please meet @luladavis @martid @brandysands @tinalove @leemiller @cautiousoptimism @kathleensunshineobrien @trainwreck54 @sailtown @jomama @fundytide. There are many more. Have you seen the discussions on the Breast Cancer group? https://connect.mayoclinic.org/group/breast-cancer/?tab=discussions

What type of chemotherapy will you be getting @sheenah?

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Hello Colleen!
Thank you for responding and for introducing me to others on the group. I have always been an optimistic person, and this situation warrants no exception. I will be starting With Adriamycon & Cytoxan followed by Taxotere, Herceptin & Perjeta. I already have 1 wig & am getting. Another made, just being as proactive as I can be. I will check out the breast cancer group also. I really appreciate the info.

@martid

Welcome and so sorry you have reason to be here. It does make a huge difference which treatment program you are on. I was not triple positive, I was Er/PR- HER2+ ; I was on carboplatin, taxotere and Herceptin – the TC every 21 days for 4 months; the Herceptin every week for 4 months then every 21 days for 8 months.
If they have a chemo class, be sure to go. It will be a big help. The nausea meds they have now are pretty good, just stay ahead of it. Many people kind of breeze thru it with no major issues; others have a very hard time. From what I understand and have experienced, breast cancer chemo is one of the harder ones. I am currently going thru chemo for Stage IV colon cancer with mets to my liver. It is physically easier although more drugs and more often. Breast Cancer.org has a good site and can answer a lot of questions. There are also some great groups on Facebook.
Feel free to ask anything; I can tell you what MY experience was, which may or may not relate to what you will deal with. You will get used to the phrase “everyone is different” – I have and still do hear it a lot

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Thank you @martid!
Nausea really is one of my biggest fears, so I’m glad to hear there’s options for avoiding it. How are you feeling and doing with your treatment?

@martid

Welcome and so sorry you have reason to be here. It does make a huge difference which treatment program you are on. I was not triple positive, I was Er/PR- HER2+ ; I was on carboplatin, taxotere and Herceptin – the TC every 21 days for 4 months; the Herceptin every week for 4 months then every 21 days for 8 months.
If they have a chemo class, be sure to go. It will be a big help. The nausea meds they have now are pretty good, just stay ahead of it. Many people kind of breeze thru it with no major issues; others have a very hard time. From what I understand and have experienced, breast cancer chemo is one of the harder ones. I am currently going thru chemo for Stage IV colon cancer with mets to my liver. It is physically easier although more drugs and more often. Breast Cancer.org has a good site and can answer a lot of questions. There are also some great groups on Facebook.
Feel free to ask anything; I can tell you what MY experience was, which may or may not relate to what you will deal with. You will get used to the phrase “everyone is different” – I have and still do hear it a lot

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There are several different drugs available for nausea. Compazine gives me a headache, although it works well. Check into some of the natural controls; some may work for you. I learned to treat it like morning sickness; a little something in my tummy really helped. For me it was sesame stix; some do crackers – and ginger ale. Anything with ginger may help. They make a ginger candy that worked for me that I found at a health food store. My husband froze juices and then chipped up the ice and I was able t suck on that to avoid dehydration. Dehydration is a big problem during chemo – it was before and is now so I think it may be all of the chemo drugs, plus the process itself. One of the drugs I am n now causes extreme sensitivity to cold so I cannot do ice chips. I kind of stay on the edge of dehydration right now because of the back ground nausea. Just remember, hydrate, hydrate, hydrate – no matter what. If you get dehydrated it makes everything feel a whole lot worse – physically and mentally.

Once you start on the Herceptin/Perjetta only, you will probably feel a whole lot better, but that is a tough regime to start with. Communicate with your doctor and nurses and stay on top of everything. It is easy to think that feeling awful is obviously “normal” and just not say anything. For instance, you may be given steroid pills to take a few days before chemo and they may bother your stomach and esophagus. I was not forceful enough about how much they hurt and ended up with some damage to my esophagus. They were able to lower the dosage (better to be a bit more nauseous) which helped. Fortunately, this time I do not take oral steroids although I do get them be infusion on the day of chemo. A difficult part about this is doing a 48 hour pump which has to be carried in a fanny pack. It is supposed to be very effective though, so I am adjusting to it. Getting a stage IV diagnosis is tough and accepting the very real probability that one won’t still be around in 5 years is tricky while still remaining positive. So far the emotional/mental factor has been the more difficult; I am fortunate that I do not have many physical complaints at this point.

Good luck! Keep that good attitude.

Hi Sheena, I had Lymphoma and had to undergo Chemo. I must say, it was a new journey for me and I thought the same way you did but to my surprise, I had no after effects, no pain,no vomiting, but I did have the “no energy” which is normal and I was tired all the time. That will subside after awhile and you will get back to normal. I am in remission for over a year now, go for blood work and cat scan every 6 months and they have been coming back normal.
So, hold in there, do what ever your doctor tells you and eat lots and lots of sweet potatoes, they work for me . I pray for your recovery . Lacey

@martid

Welcome and so sorry you have reason to be here. It does make a huge difference which treatment program you are on. I was not triple positive, I was Er/PR- HER2+ ; I was on carboplatin, taxotere and Herceptin – the TC every 21 days for 4 months; the Herceptin every week for 4 months then every 21 days for 8 months.
If they have a chemo class, be sure to go. It will be a big help. The nausea meds they have now are pretty good, just stay ahead of it. Many people kind of breeze thru it with no major issues; others have a very hard time. From what I understand and have experienced, breast cancer chemo is one of the harder ones. I am currently going thru chemo for Stage IV colon cancer with mets to my liver. It is physically easier although more drugs and more often. Breast Cancer.org has a good site and can answer a lot of questions. There are also some great groups on Facebook.
Feel free to ask anything; I can tell you what MY experience was, which may or may not relate to what you will deal with. You will get used to the phrase “everyone is different” – I have and still do hear it a lot

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Hi @sheenah, I am a nurse and educator with Mayo Clinic Cancer Education Center. Your questions and concerns about chemotherapy are all very normal. I’m wondering how you are doing? I hope that you are not experiencing too many side effects. Most chemotherapy regimens include an anti-nausea medication to prevent it from the beginning. You might also have a prescription available for any breakthrough nausea. If one is not working well, let your team know…there are many to choose from. Anti-nausea drugs can cause constipation too, so keep this in mind…you may need to take miralax or something similar to counteract this effect. As others have mentioned, ginger can really help too. Also, once you have an idea on how you feel during and after chemotherapy, you will get to know when you feel better during the day. Take cues from your body and eat small meals when your appetite is good with little snacks in between. Stay well hydrated with water and juices and take short power naps throughout the day to keep your energy strong. I really like this resource for Nutrition from the NCI http://www.cancer.gov/publications/patient-education/eatinghints.pdf. Keep us posted on how things are going.

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