Starting chemo January 2018
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The WORST of my fears come from the unknowns... I’m trying very very hard to have a “normal” weekend but it’s not really happening in the back of my mind constantly is my MO’s voice telling me my ct results... I’m normally such a positive person but that’s kinda hard lately... 1st mammogram thought okay I can do this once a year NEVER thinking 🤔 they would find anything... 2 mammogram &US okay no way it’s gonna be anything most of these things turn out to be nothing BIOPSY 😳 okay Misty calm down 80% of the time it’s NOT CANCER PCP calles ON PHONE CANCER 😳😳😳😳🤦♀️🤦♀️🤬🤬🤬 BS tells me it’s small best possible situation for a cancer dx no chemo 5 weeks radiation done PATHOLOGY comes back it’s spread to my sential lymph node triple positive and I need chemo radiation followed but hormonal therapy for 7 years... So I think 🤔 ok this sucks but I can do This... I go to have what I’m told is a STANDARD echocardiogram and CT scan so I could Start chemo And BOOM 💥 they find suspicious 😒 nodules on my pelvis, lungs, and clavicle 😯 UNBELIEVABLE I’m still processing the fact I have breast cancer I feel so healthy expect for what my drs have done to
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I can see how just going ahead and taking control and buzzing your hair on your terms can make it alittle more easier.... at first I was freaking out about starting chemo and losing my hair that was until my MO started telling me about other possible SE’s Mouth & Throat sores 😳 Fingernail and toenails coming off 😳😳 No immune system during the worst flu season in 60 years 😳🤦♀️🤦♀️🤦♀️ So then I was like hmmmmmm maybe TEMPORARILY losing my hair wasn’t the worst thing to worry about lmaoooooo I mean ladies after I left the 1st meeting with my MO I was freaking out for real 😳 I have serious anxiety before this and now it’s really bad
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WorriedMe77 I so understand the rollercoaster you've been on in fact I was on the same one. Mammo showed something really small so right to unltrasound. Said it's small don't think cancer but it was up to me to do a biopsy. I said yes that I would rather be safe than sorry. So biopsy done and again don't think it's cancer, it was so small couldn't hardly get any fluid. Call comes in it is cancer. See surgeon and pretty sure with size I can have a lumpectomy, one time radiation and then hormone therapy and no chemo. Radiation doctor said no wasn't enough on biopsy report to convince her one time radiation was a good thing, so at this point it's surgery and regular radiation most likely. After surgery pathology report comes in and it stayed small but it's triple negative so I have to have chemo and full radiation. So I do understand your rollercoaster ride.
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Worried - I’m so sorry you’re going through this. My story is so similar- with every day a new surprise of the bad variety. I too had a small tumor which meant surgery then rads. That turned into two tumors, still surgery rads. Then after surgery, pathology showed an aggressive triple negative tumor “hiding” behind the first tumor found. TN is aggressive with no option for hormonal therapy. So now chemo a must. Oh yeah and a positive intrammary node.
I did have an MRI prior to surgery that showed suspicious areas on my bone. I had a bone scan. Turned out to be nothing, but was terrifying. I’m hoping you get good news - you truly deserve it at this point.
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Good morning all-- Reading your posts is so helpful. Started my first Dexamethasone this morning, so am prepared to wash and wax the whole house today. First chemo appointment is tomorrow, and I'm ready to get this done.
Is anyone else not wearing a wig? I've purchased a couple of head wraps, but have not had the courage to buy a wig yet. (I've made an appointment for a short haircut next week, and will see where it goes from there.)
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PrincessBut - Hello, I have a few scarves, a couple of caps and I do have a wig. My understanding is the wig is hard to use at the beginning because the head is kind of sore. Not sure but I bought it in case. I will probably wear the wig outdoors and the scarves inside. It's really cold here so the wig will be warmer at times.
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Hi, I start TC chemo tomorrow. 4 treatment every 3 wks. I was wondering if anyone has tried fasting before chemo? If you have, how did it go?
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Krose - I fasted for three days prior and it maybe have been a very poor decision on my part.
I had a lengthy interview with researchers who are doing clinical trials according to Dr Valter Longo and they will not allow anyone under 20 BMI to partecipate (I have a BMI of 17 which is not my norm but I’ve never been up to 20).
Unless you are of proper weight the effects can be counterproductive (saw them after my fast). In fact the fast has better results on mid-weight people, not over or under. Even at 20 BMI one risks losing muscle that can never be gained back.
Even though my fast consisted of 300-500 calories I was so very ill the night of (vomiting) that I had to have emergency services come give me some injection.
My case may have been unique but it did nothing for side effects (my total dosage of dexamethasone was 5mg during infusion and 4mg that same night). I slept like a baby and by day three was out and about.
A nutritionist has suggested no sugar in the two days prior - as in low to zero GI foods.
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Hi Princess, Ive learned that I’m a hat person. Friends threw me a ‘hat party’ and I am now awash in lots of crazy, colorful and ‘different’ kinds of hats... including a pussy hat that I am wearing tomorrow to get my Neupogen shot. I noticed that you are also a member of the same PR- club as I. Lovely, isn’t it?
Regarding fasting, I am a faster. Yet I have found that I needed something on my stomach preceding and for about 4 days after chemo. I found that a graham cracker or 1/4 cup yogurt every 4hrs kept nausea at bay...along with the meds of course. Would be interested in hearing what worked for you, Krose.
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hi everyone!! I am late coming in but still make the January cut off. My first chemo session is January 30th. I have read all the posts and I feel like I already know you all. I am from AZ but moved to San Francisco 3 years ago so I have no family or friends here. My husband basically is my support system. It was a shock to me to find out a week before thanksgiving that I had breast cancer. I wanted to tell my doctors that I can't because there is no time right now with holiday and kids etc. I was also told that because I was stage 1and lymph nodes looked good, MRI came back good; tested negative for Braca gene and her 2, I would only need lymphectomy and either radiation or mastectomy followed by 10 years hormone therapy. I decided to go with mastectomy and scheduled. Right before Christmas I was told that I needed an oncotype DX test to see if I needed chemo. My number came back higher than my MO liked and because I’m 44 and have family history, she reccommended chemo. Canceled surgery and then scheduled chemo for the 30th and now Iam told a week before chemo that I need a CT scan of chest, abdomen and pelvis followed by a bone scan. WTH!! I feel like every day I find out I need another test or scan. It really sucks. I decided to do the penguin cooling caps because I’m scared to death of losing my long hair. I figure it’s worth a shot. I’m just glad I found all of u. A person can really feel lonely and go to dark places when they don’t have much support.
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Sarah - don’t panic at the requests for additional testing. Actually more tests mean a closer look at the big picture. Get a full over look at all the corners and crannies and see what the full situation is.
I had MRI, ct, PET and whatever else they had to offer. Based on results they were able to find the best treatment.
Something funky was seen in ovary on PET but it is thought to be a normal follicle. I had one u/s in December and will have another next month.
I don’t know about Onco test reliability but what is your Ki67 score? That would be taken into considerably of whether or not to do chemo.
I’m currently sitting here after no 2 EC and waiting the additional 2 hours for capping.
The first time around the cap didn’t feel as cools, this time its really cold and I’m a bit dizzy. I have a cashmere wrap wrapped around my head and neck and I had ibuprofen and Xanax for breakfast.
Nurses say my hair looks great for day 20. I say my hair still looks to be on my head - so that is great.
I’m just praying the SEs aren’t like last time.
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@Amelia01 - Good luck today; the caps were the worst part for me too, I didn't feel too well during/afterwards either, then came the chemo SEs. I'm losing hair everywhere else, and some shedding on the head, but not horrible (yet??). I'm sorry your asshole cat bites you
@WorriedMe77 -Hang in there, the waiting is the absolute worst. It's not enough to be going through all of this, to add more things to worry about, I agree your doctor could have gotten you in for testing more quickly. I am thinking of you.
@SarahSC - It's nice that you've found this group; it must be hard for you to be away from family. I'd encourage you to reach out to people near you anyway. I delayed telling friends & neighbors about my cancer dx because I tend to be a more private person, but once I did people near and far have been so supportive and lovely, it is the silver lining during this whole mess.
Anyone else deal with a breast infection during chemo? My right breast reconstruction was 12/6, recovery was complication-free. First chemo 1/5; I was feeling better last week, until Friday, then in the ER for hours yesterday because of painful, swollen, red & warm to touch breast. They gave me antibiotics, and I have call into MO to see what's next. Aside from worrying about the breast itself, my main concern is this will delay the chemo schedule. Any one have similar issue?
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Sarah, your story sounds a lot like mine. I had started taking my AI when Oncotype score came back very high and MO put me on chemo. Also, every diagnostic test under the stars. But I feel more confident now. Hope your treatments go well.
Amelia, so hoping No2 Rx goes better! Please let us know about the hair!
Laura
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Amelia01- thank u. I haven’t heard about that last test but to be honest I just want whatever they can give me. I’m sure I could find a doctor that says I don’t need chemo or I can do it if I want. Every relative of mine that has died has died from some kind of cancer. I really just want to do everything and anything even if it seems extreme. As far as the cooling caps, I was told my the rep that antianietxy meds can cause hair loss so I’m trying to avoid taking them during the next 3 months. It will definitely be hard for me to skip the Xanax or lorazepam but I’m going to try. My husband got me an electric shawl so I will see if it helps. I pretty much have no pain tolerance so this should be fun
That It is great u haven’t lost a lot of hair. I’m using that as my motivation
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I know I am late to the thread but... I start TC on January 31. I'm another "progressive diagnosis". It just seems to keep changing for the worse. My mammogram only showed calcifications. I had my biopsy on my 44th birthday (August 22). Two days later I had breast cancer. I was told it was dcis, that surgery was all I needed, hormone therapy was optional...every medical professional except for my primary care physician thought I was crazy for wanting a bilateral mastectomy. I really didn't like my surgeon and the plastic surgeon he worked with only did implants so I switched hospital systems. That cost me some time plus we already had a trip to Disney world planned for Halloween. By the time I switched doctors/ plastic surgeons and they synchronize their schedules December 6th was my surgery date. I has a double skin sparring mastectomy with diep flap reconstruction. Unfortunately what they found was more than just dcis. I was upgraded from stage 0 to stage 1a. They found an invasive 1.2 cm tumor. It was er/pr+. That made hormone therapy necessary but not necessarily chemo. Well my oncodx came back at 31. So off to chemo I go.
I have two little kids 4 and 5. I'm most worried about how this will affect them. I'm trying to keep my hair with cold caps but even the surgery and recovery has upended their lives. My biggest fear is dying before they are grown. Before surgery I had this reoccurring dream of my daughter asking Santa to bring her mommy back for Christmas. Trust me, I spent a lot of time bursting into tears.
I am healing fairly well from surgery. I do still have an open wound on my abdomen and last week they has to put a drain in because of a pocket of liquid in my belly. My plastic surgeon says he is fine with me starting chemo on schedule.
I am scheduled for four rounds of TC three weeks apart. Everything about it scares me. I have very dry sensitive skin, the thought of it getting more uncomfortable than it already is terrifies me. I was super sick with both pregnancies, I lost 40 pounds with one and 20 with the other. In fact, with my miscarriage I knew something was wrong because I wasn't sick as a dog. I hate having an upset stomach more than anything else. I already have very slow growing hair and had to grow back from bald due to a benign brain tumor. I look ok bald but there is a stage when I have about an inch of hair and it all sticks straight out in every direction that is awful. I am also bipolar 2 and have serious anxiety issues. Ugh, I'm a hot mess. Every day brings new panic attacks. The thought of letting them pump poison into my veins makes me want to crawl out of my skin.
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@lynnzrose I had a complication-free lumpectomy, but I have the beginnings of an infection, too. I started chemo on January 5. I did a round of antibiotics that cleared it up, but it is coming back. Now they don't want to do another round of antibiotics, so I'm using an ointment that doesn't seem to be doing anything. I have my second round this coming Friday, and I hope the doc stops by to check it out.
@Krispiemae I know how scary it is! I have to say, for me, at least, the reality of the chemo has been so much easier than the anticipatory fear. I had some side effects the first week, and I lost my hair this weekend, but none of it has been unmanageable. I have felt completely like myself for the past week, and it's surprising! We are here for you when you start--you can do this!
Today was my first hair-free day out in the world--at work and then out for drinks with friends. It took me all day to screw up the courage to just be bald out there, but then I did it, and it felt surprisingly ok. Everything so far has been easier than the worry that preceded it, even though so much of this is hard. Sending love to you all! I'm glad you are here.
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Hi everybody in the group. I might have posted earlier but I have been reading your posts and they have been so helpful but now things are really starting to hit me. I start Chemo tomorrow 1/23/18. Chemo has had me worried more than having surgery. My chemo is TCHP every 3 weeks for 6 weeks. What type if side effects did you have after the first round. Did you have any during the infusion?
I to have been overwhelmed by all the tests. CT scan/ bone scan/ echo. Then had my port placed Friday the 19th sore for a few days but not to bad now. I have found I don't sleep much the night before appointmens or procedures. has anybody had this problem and do you know anything that helps. I have not gotten a wig, was brave enough to try on a cap.
I want to wish all of you the best possible outcome and I will be praying for you.
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LKinKC, you could have anxiety, so talk to your MO he might give you Ativan so you can able to sleep. It is important to have adequate sleep, it is very stressful for waiting also. I didn’t have TCHP, but I was in July And August thread and I finished chemo about 9 weeks ago. From what I saw, it is mostly lost of appetite, bone pains and constripstion also. You might want to pick a soft toothbrush because your gums might get sensitive. Also you need to use baking soda/salt for mouth wash.
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Hi all - I have discovered that my post chemo bad days are days 3-5. I shudder too think about how bad I felt on day three. I didn't vomit but I had chills, fatigue, and an overall feeling of being unwell. The palms of my hands are turning dark and, interestingly, I have lost pubic hair but the short cropped hair on my head is hanging on.
In spite of all the changing diagnoses and discomfort, we can do this. I have all of you in my prayers.
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Well I had my Chemo Teach appointment today where they laid out the course of action. First he figured out that I am in fact Stage 3C, which was a blow. So I start adriamycin and cytoxin (AC) on Thursday the 25th (not the 29th as originally scheduled). I had hoped so hard not to get the red devil, so I pretty much lost it in the Teton Cancer Institute office. Everyone was so nice, and I felt embarrassed. But my husband consoled me by saying, "they aren't the ones who have cancer, you are... so you are entitled to lose it." Made me feel a lot better actually. He's a rock- how lucky I am.
Going tomorrow to get my hair cut short, not gonna shave it yet, and not gonna bother with a cold cap. I wear hats and scarves a lot as it is, and the Oncologist wryly told me that they don't work well with the red devil anyway.
I'm going skiing tomorrow while I can.
Go girls- we got this.
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Good evening all, I had my first dose of chemo today (TC). I had a wonderfully chatty nurse who talked birds with me and got me through the procedure. Two doses of dexamethasone yesterday, two today, and two tomorrow (plus self-injecting Neulasta tomorrow as well). They gave me Zofran with the infusion today, but I still have some nausea (which is made worse by Dex-related hiccups). Will do zofran again tomorrow morning to head off the nausea.
Has anyone had success in dealing with hiccups? Thanks.
(Also tried on a head wrap yesterday when it came in the mail, and I have decided that it makes me look like a pirate. Not sure about these but will hold my judgment.)0 -
I am 1 week post first TC chemo and feel human again! I also realized that, for me, ‘the bark was worse than the bite.’ I truly feared chemo. But I now know I can do this. Yeah, days 3-5 were no picnic, ie, fatigue, reflux, sleep issues, constipation, and achiness, but time (and drugs) healed all.
We are all so individual and our symptoms and their treatments are uniquely ours. This community has offered me important perspectives, a wealth of information, and a sisterhood of sharing. Thank you from the bottom of my heart.
Carpe diem, Laura
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roxy13 - How was skiing? We have a family trip planned and I wonder if this is an option for me?
Worriedme77 - thinking about you! The waiting is so difficult.
I meet with a lady yesterday who is thru 4 of 6 Chemo sessions. She looked so good bald - I can only hope to look half that good! But what really caught me was her inner strength. Clearly this has been a very difficult journey for her, but she was so impressive it made me think of everyone here and what lies ahead for us and how we will get thru this!
Countown is on chemo in two days.
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Sending you good thoughts today, @WorriedMe77. I think you get some results? I hope they are good, and know that we're here for you, whatever they are.
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@Coach1216, skiing was great. I plan on going again this weekend. I couldn’t have done it the first weekend after chemo. I was too tired and dizzy from the meds (and lack of sleep) but back to normal the following weekend. It wasn’t too cold, it was sunny, and the combination of sunshine, exercise, fresh air, socializing etc. was quite beneficial.
Good luck on your first chemo
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Hi everyone! I am sad to say that I am joining your group! I have been lurking here for a long time, but wanted to thank all of you for your posts as they have truly helped me. I started my chemo/target therapy on January 19th. I was doing very well up until yesterday...then it was like a Mack truck hit me! The bone pain smacked me back to reality very quickly! I tried Tylenol with no results. Warm baths, no results. Hydrocodone, no results except for making me feel really loopy and doped up. I finally took Advil and got some relief. The nurses warned me days 3 through 5 are the toughest and I truly believe them now! I had my long hair cut super short this past weekend and that was extremely traumatic for me. LOTS and LOTS of tears. For me the fear of chemo and what was to come was the worst part, until we got to the bone pain.
@LKinKC I am having the same treatment you are having. While I was having my first infusion of Herceptin I started to get bone chills, like you get with the flu. I started to shake like when you have a fever and I said something to my nurse. They immediately stopped the infusion and gave me some more steroids and fluids. Once my symptoms resolved they continued with the drug and I didn't have anything else. I even drove home from my treatment. Day 1 and 2 post I really felt pretty good...a tiny bit of nausea, but nothing that the medicine didn't take care of so that I could eat. Now yesterday was Day 3 and all of a sudden the bone pain and fatigue kicked in...it wasn't a pretty day for me! But I have been told that every single person is different!! Good luck to you and I am praying for you and all of us!!
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Hi smikeym - Yes day 3 will sometimes hit like a bag of rocks. Are you taking Clairitin? That will help with the bone and joint pain. I start taking it the day of and continue 5 days after. It seems to hold it down to an ache. I to am having a hard time with the hair loss. Mine is now starting to shed a lot, so I figure it's just a matter of time now. Hang in there.
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@worriedme - thinking about you today and sending positive vibes! xx
Just a quick note on day 2 after chemo. Infusion was no big deal (I like to pretend the red devil is an Aperol Spritz or other fun cocktail). I colored, I read, I realized with the cold cap I couldn't reach my food ( I could reach the nurse button, so had that going for me).
I am so very thankful that second round wasn't at all like first. I think my severe issues on round 1 were due to having fasted beyond reasonable sense, and being so nervous that I gave myself a stomach migraine.
I am taking a very low of dose of steroids this time around, but they are doing nothing to keep me peppy. In fact it is 7:45 pm and I'm ready to hit the bed.
Or should I be exercising? Being lethargic just leads to more lethargy. Any tips?
@Roxie - I think it is great you went skiing! I had my mastectomy (only one side) and can't imagine having that much arm movement yet! They did saline implants straight away? I have a tissue expander and feel like I wear an iron cage. I just hope to someday ski again.
No hiccups to report on.
Shedding still going on but at least in the mirror doesn't look like it, thankfully.
Tomorrow is another day --- hope to at least get dressed and feel normal!
xx
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Hello. I am new here. Bilateral mastectomy on 11/22/17. I am 46 with an 11 year old. My journey began being diagnosed with IDC on Halloween. Stage 2, grade 3, 4 cm tumor. Mastectomy followed. I had the oncotype test which revealed a score of 21. I opted for chemo, TC x 4. My first chemo was last Friday. I am no picture of health so this chemo hit hard. So many bone aches and pains. I am taking Claritin and Glutamine. Are the chemo cycles cumulative or will the side effects be more of the same with the next 3 cycles? Any help is appreciated.
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@Char105 I am taking Claritin, but it seems to have done nothing. Although today it has been more manageable or my mental toughness is just not letting it get me! Lol!
@Mahteacher...I have the same question that you have and hope someone can answer for us! I'm 43 and have a 12 year old and was just diagnosed at the end of December. Due to my tumor being Her2 + I am having chemo first and was wondering if the effects I have now are what I am going to have or if they will get worse with subsequent rounds.
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