Starting chemo January 2018
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Caught a head cold with a slight fever ended up in the hospital which is where I probably caught my cold. Fortunately after a day of feeling crappy everything seems to be on the up and up. Amazing what a difference a day makes! One day at a time - hope it’s a great day!
Oh and go Patriots
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I just started AC today, and I had the worst nausea of my life. I am feeling a little better after using some cannibis products; I was finally able to eat some tortillas and fall asleep. Now awake, sipping water with electrolytes.
Hoping this is just a first day AC thing? I can’t imagine the nadir If this is day one.
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TerriAnne - Hang in there. You got this
Roxy13 - Wishing you the best you got this
I am going in for day 2 of round one so the nurses can see how I faired with my Adriamycin fannie pack.
Day 1 , I had mild nausea. I sucked on Lemonhead candies to address this, then ate a couple of wheat peanut butter crackers. This worked. I didn't feel the nausea until 5pm and 11pm.
I also ate two small meals that consisted of rotisserie chicken and baked beans. I wasn't hungry, but remembered I was instructed to eat and small meals every two hours was okay.
I ate a big breakfast on day one. I think that helped me. I did drink water and ensure while there in addition to the wheat crackers.
Not sure what will experience today, but happy to make it to day two.
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Eschindler - It is probably more common to have nausea the first days and then it tapers off. Your nadir day (around 13) is when your white cells are at their lowest. Most people don't even realize it - maybe just a bit less energetic? I found cannabis to be the only product to work for the nausea - sure beat any meds the doctors gave me.
Roxy - thinking of you!!!!
Got my mouth sores today! Hurray! Going to add these to the long list of "inconveniences". Eating has been difficult enough, now to add these?
I attended a funeral today of a friend (who went out as one should, in her late 80s). It was really hard to be there. I've put myself on the mindset that this is a one off. It is gone, I'm doing all of these horrid and gross things to my body (chemo, radiation etc) as the insurance policy and by September or October when I get my final boob job this will all be in the past and as the years go by it will slowly fade from my memory. Can I be that presumptions? Aren't we supposed to be?
If anyone else has been diagnosed with lobular, a very interesting study was recently published. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53419...
Peaches, this probably was your case.
In a nutshell, they've found that in 15% of ILC cases (high grade), there are gene mutations that do not show HER2+ aspects on a pathology report but that are there and would highly benefit from being treated with protocols for HER2+. It was for sure a hard read but there are some genomic testing labs that look into this particular gene mutation. Foundation One is the name of one of them.
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Thank you for the kind thoughts, everyone!
Amelia, you are not presumptious, you are optimistic, and I would say, realistic! We live in a time where breast cancer is treatable, so why shouldn’t we expect that we will put this behind us once we are done the treatment? Yes, we will always have the fear of recurrence, but I’m not sure that we are any different from the people that never had cancer. We apre just more sensitized to the possibility that it can happen! And I truly think that the moment we start having doubts that we can beat this, we lost half the battle!
On a happier note, I’m back from the hair salon. Driving there was like going to the slaughter, but it wasn’t too bad overall. I didn’t buzz my hair, I pixied it. It was my stylist’s suggestion. He said it won’t be as noticeable. I also got my wig trimmed. I won’t bore you with the pixie, but am attaching a pic of the wig. I normally wear make-up, but didn’t today. And see what I meant about the wrinkles? :
XO
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I'm 5 days out from my first chemo and found days 2-41/2 really hard. Tons of severe bone pain and aches - before this I had no idea what 'bone pain' event meant. I am in the dark no longer! I even wondered if I was reacting to the Neulasta. A few nights ago I called the on-call oncologist at the hospital, who said the docetaxol (chemo drug) might also be participating in my overall pain. I made the call because my blood pressure was low and I was having some shoulder tip pain too. I didn't want to be alarmist but wondered if I was perhaps reacting badly to the Neulasta, as the blurb about it mentions these two signs. Since it can blow out the spleen if something goes wrong so I thought I should be conscientious here. I'm glad she (the doc) was not concerned and I learned some other useful tidbits. Like I should ask to keep on the steroids for a few more days after each treatment (not just post 1 day) as this could disrupt my major pain reaction more completely next time. I should take the codeine even though it may mess up my gut, because I really do need the pain management. I am finally on a continuing dose of that now (along with Naproxen and Claritin) and will continue for a few more days.
I feel like this whole experience is a big learning curve - what to expect, how to plan, how to manage. I am hoping and trusting that I will find it easier next time.
Re Hair - my onco nurse said hair loss can start at 6 to 14 days, so on day 10 I am going for a buzz cut at a salon that offers this service free to cancer patients. Part of this move is really to get use to 'the look.' I am very concerned about being freaked out by my bald head and thought this would be a middle ground to get me through a week or so. And the? Look Good, Feel Better facilitator said it makes it more manageable for the hair to fall out. Someone else suggested a satin or silk pillowcase - anyone try that yet
Oleysa - then I guess Biotene is not the magic bullet. Just a bandaid that I hope keeps working for me!
BeyondBless - any advice on placement of the port, or anything else? That's a long time to be sore, and I am sorry you are struggling with that! I have requested this device, but won't get it for another week or two I think. Part of why I want it is that it can also be used for blood draws, not just infusions.
Good luck all. Just take it one day at a time - a stupid cliche, but it holds water these days!
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Hi, all! @Roxy13 that wig is amazing! You look fantastic, and I never would have guessed it wasn't your new haircut.
I am SO TIRED today. It's day 6 of my second cycle, and I think I just overdid it with a long work day yesterday. I've also developed a really annoying cough, but I'm reminding myself that it goes away if I'm patient. I'm mostly in good spirits about this whole thing, but today I just want to say this sucks, and I wish I didn't have to do it! Thanks for letting me get that off my chest. Bah.
Ok, I'm going to go snuggle up on the couch and zone out to some tv, because I can. Hang in there, everyone!
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Roxy13 I agree with Okkate75 - you look great! also wouldn't guess if it was not your real hair!
Okkate75 -hope this yucky feeling will pass soon!
I don't know if i should brag but i really need to share: last three days i feel human and myself again - full of energy!i changed some scenery at home which involved moving some furniture around. it felt good to be able to do it!
today the CCAC nurse called because they got a message that i was in ER with some "minor issue like a back pain". I almost fell off the chair to hear it. I was in a fricking back labor for a day!!! anyways, they asked me if im in need of any assistance. I told them that today i felt so good i couldn't even think what was bothering me before.
my mouth sores are still there but now im rinsing my mouth with salt/soda mix every time i go to the bathroom (even to just to look in a mirror), and it seems to help. my lips are really dry today though. started to use lanolin on them. also im curious if anybody experiencing this: when i blow my nose (its drippy now), i get some bloody streaks on a tissue. wondering if my nose hair has to leave with a big "parade":))
taste buds are gone......
and my acne is absolutely outrageous! i can't stand it! wondering if its reaction to Lupron....so many drugs with similar side effects to guess which one is a culprit.
and last thing(really don't want to jinx it!): my daughter brought some monstrous cold from day care(she's been sick with it for a week now). pretty much all my family is dropping like flies with it as well. im just hoping beyond the hope that being a child care provider will somehow protect me,as i had been around my little petri dishes for a long time and might have picked up every possible cold germ know:))) fingers crossed:)))
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Olesya- I hope you get some relief soon. I received a RX for Magic Mouthwash for mouth sore it helps tremendously.
It's officially my Day 3 of treatment. Last day of Adriamycin. Then 5-fu on Friday to finish the week of my first cycle.
Can anyone tell me how long the mouth sores remain? Do they start with each cycle?
Taking one day at a time.
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Mouth sores: didn't get them until a week after infusion 2. Not fun.
Insideout - are you doing your infusions over several days? What is your dx?
Roxy - I love your hair!!!! Or shall we say the hair you wear
I found a beautiful wig, so beautiful, in fact, that anyone who knows me would know its not mine. Not needing it yet (knocks wood!)
Are wigs in the US / Canada running at $1500? The nice ones here in Italy do. I'm not wanting to reach in my pockets for that but alas... if need be.In fact, this whole deal is costing so much money! I feel like I'm shelling out money left and right.
I have to get a personal trainer because I'm too grossed out about going to a gym (cleanliness standards are on the lower end here) and I am so run down and weak that if my body were stronger, I'm sure I would feel better. (as she tosses more money into the air)
Today I go for hydrocolon therapy. I'll post the details later one
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Amelia01-How long do the mouth sores last?. My infusion is over 4 days. I was first diagnosed in my left lymph node. It was discovered with my MRI guided biopsy I have two primaries in my left breast. Neither could be seen except with the MRI. My lymph node was picked up in my mammogram and ultrasound first. My PET, CT (eyes to thighs), Brain MRI, and bone scan were clear. The PET showed the lymph node and left breast. I am doing my 1st of 6 rounds of FAC. Then surgery will follow.
I felt weak this morning and realized I missed a couple of my mini meals with a bottles of water. I was instructed that when my fluids pass through my body they should be no darker than a bright orange. Well I had drunk so much water, Ensure, fruit smoothies, it was clear even with taking my iron pills. My last fluid dispense was dark orange. The one thing I could control, I missed. I gulped down a bottle and a half of water, an 8 oz bottle of Gatorade, and bottle of Ensure. Followed by my morning vitamins and iron.
I am an early riser. I have two teenagers and we always talk before they head out. I wanted to make sure I didn't miss today's time. I get more of what's going on during this time.
I had to laugh at myself. I wanted to be in control and ready for this morning I drunk half if my 8am smoothie too all before 3:30am.
Well something must have worked because it is 5am and I am ready for my huddle session with my teenagers later this morning.
Lesson learned for me. Try to stay on schedule, but if I miss one it's okay. I will start again, but not take in as many fluids in a short amount of time. 😊
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Thank you, all for the compliments! Now if I can just figure out how to wear the wig properly... It sems to always slip up. I have to adjust it properly. It may get easier when I lose all my hair.
Amelia - my wig was CAD $1,600 plus tax (13%). I have a private insurance plan that covers $250 only, and my husband’s $300. I think longer hair wigs are even more expensive - they can be up to $3,000. The artificial ones are more affordable. It’s a shame that they are so pricey. My mother had bc and couldn’t afford one, and was so self-conscious... I figure I’ll be wearing for a long time, and I get monthly hair cuts and highlights, so in the long run I’ll save money I think.
And keep the trainer! My doctor told me that studies have shown that regular exercise reduce the risk of recurrence. I hate exercising myself, but I try to go daily. About five boutique exercise studios have been popping up in my neighbourhood (it’s weird, I know
) and I go, plus I have a pilates trainer.Olesya - I also had dried lips, and bloody streaks in my nose. I wouldn’t say I had cold sores, but the inside of my mouth felt burnt, and that lasted well into my second week after chemo. Hope you don’t catch your daughter’s cold!!!
Okkate75: hope you get better soon! Take it easy. I guess it’s true what my MO said that the fatigue is the one side effect that gets worse throughout the chemo.
Speaking of which - I have my second infusion today. I had a hamburger last night in the hopes I’ll develop an aversion when I get nauseous
Take care, everyone
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i posted this in the December chemo thread by mistake yesterday.
Just finished AC #3. I am so glad I only have one more to go. Of course there is always something with this journey. Last week my internist changed my blood pressure medications and i am no longer on a water pill. The result? I am barely able to fit my feet into shoes and a 11lb weight gain! Can a sister please catch a break?
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Roxy -good luck today!
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Hi Deaelle! I finally found a comfortable position to sleep in with the port. I’m a side fetal position sleeper and it Ms been tough. I found that yesterday was like a breakdown day for me. I just took a moment and hadn’t a good cry. I was achy and seems either gas or heartburn or something was just sitting in the middle of my chest.
The surgeon placed port on the right side. It’s feeling much better, yesterday the incision was super itchy. I was a bit concerned about getting the port at first , that fear of the unknown however I am glad I did , it made the infusion Friday less horrifying for me. I also did the Neulasta and while there has been slight pain it’s been bearable and taking the Claritin definitely help.
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just canceled a BS appt I just need a break from the docotors appts... I dreamed all night about cancer 🤬 can’t even escape this nightmare when I’m asleep!!! Today’s hard for me already And hasn’t started uggggggggg welcome to my new normal I guess
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I went for my 2nd cycle yesterday. They changed the nausea meds due to severe headaches the last time. I think by doing this I had to take one of those pills earlier and these are drowsy pills. Yay
Waiting for that Neulasta shot to go off tonight. That seems to be the worse part. Waiting for the SE to hit. I finally asked a lot of questions yesterday by writing them down so I would remember and got my answers. He is doing the BRCA1 & 2 testing since I am triple negative. He is doing this afterward all of this is over. I am guessing just in case it would be positive I have enough on my plate without adding.
Hair is really falling out now. The top seems to be shedding more than the sides and back. I had it cut into a pixie style last weekend because having the long hair falling out seemed to be worse. Guess the next step is to shave it.
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Roxy13, wow you look great love your hair when I read you got a pixy cut I looked at the picture and said that's not a pixy. it was so encouraging that it was a wig. Encouraged me to check into getting one. thanks for sharing
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Roxy13 You did an amazing job because I honestly had to look a few times it really looks like your hair!!! Very pretty... Hope everyone is doing as well as can be expected... I’m struggling with the what if”s and unknowns... I dreamed of cancer last night over and over with different dreams and different things happening but cancer was somehow in all of em I woke up so upset because sleep was my one escape from this nightmare and it’s managed to invade even there... As I type this I realize how silly it must sound to others but I am really upset and struggling and SCARED and feel that this is the only place I can come too. I have a great support system but I don’t want to over whelm em anymore than they aren’t already cause of me doctors appts setback etc so I try to put on a brave face have a good attitude and go to a lot of my appointments by myself I know they love me but I also know how hard this is for them to... I am getting so depressed and it seems that most of my alone time is spent crying when all I want is for the tears to stop... i’m sure once the lung biopsy comes back ( I JUST KNOW THIS WILL BE NEGATIVE ) And I’m able to start treatment ill feel better or at least alittle b
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It doesn't sound silly at all, @WorriedMe77. You've been in limbo for so long, it's like the worst part of the process is dragging on and on. It does get easier once you have your complete treatment plan. Keep posting here, we understand. And I would guess that if the doctors are taking their time with the additional tests because they know the cancer is out. Fingers crossed for good results!
XO
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chemo number 2 is done! 2 more to go, then herceptin until next January. I’m at home sitting here with my cold cap on still for about another hour and a half, but at least I’m at home!
Worriedme, cancer has invaded my dreams too! You’re not alone!
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Roxy~ You look marvelous!
Mothertoall~ I was on your same chemo regimen 6/15-10/15 and made it through to the other side! You will, too.
Let me know if you have any questions. 0 -
Roxy~ You look marvelous!
Mothertoall~ I was on your same chemo regimen 6/15-10/15 and made it through to the other side! You will, too.
Let me know if you have any questions. 0 -
ladies, I’m cold capping my hair to try and save it, but I’m not cold capping my face. When will the facial hair fall out? I was hoping to get rid of my lady ‘stache during chemo! Ha ha! When should we expect hair not on our heads to fall out
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WorriedMe77… hopefully this nightmare of unknown will end soon for you. it's the worst not to know what to expect. your mind is drawing horror after horror...... just breathe! take a deep breath in, and exhale letting your fears go.......
i had an emotional break down today. had very little sleep the night before, and my 2y.o. was very very oppositional about everything. her whining just wore me down.
I have a great support system: my mother-in-law and sister-in-law are very very helpful. however today happened to be the day when i needed their help the most, they couldn't offer it: MIL is sick with this terrible cold, SIL is having a company over, and my dear hubby (who is also sick but on his 6th grave shift) is sleeping. and this toddler is screaming her head off!...
anyways i managed to ship my little one off for the night to my SIL, and tomorrow she is in daycare. so i have a day to recoup.
I just hate this feeling of being unable to control my life.l used to depend on myself for many many years, and its very hard for me to ask for help. My relatives are full of good intentions, stayed with me a lot after my first chemo. and i was grateful for their support. but i realized that i need to let them know WHEN i need their presence, because when i feel good i move around the house very fast and accomplish many things, but when there are other people, i get destructed and it slows me down.
also with this precaution about not getting germs with low blood count, i avoid public places. I love public places! i love grocery shopping, i love going to the early years group with my child,ect. and now i have to rely on other people to do it for me. and i hate it! i hate to have no control over my life! that is probably why i was moving furniture around the house the other day. because i COULD control that!
Rant over. Sorry for a long post.
p.s.i guess i should post it in a RANT forum lol
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Thamk you ladies for the encouragement 🌞🌞 So I found out alittle while ago via voicemail 🤔 that I will be doing chemo class Tuesday, Lung biopsy Wens. And start chemo Friday... It’s gonna be a long week next week... However I’m relieved that they are starting treatment as I was freaking out about all the delays... Hoping this means they feel strongly the biopsy will be negative but idk... I FEEL strongly it will be.... Sending hugs 🤗 a d love to all of you..
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Oleysa - I'm finding that the feeling of being helpless is a very hard part of this journey. You are very fortunate to have a great support system and yes, sometimes when you most need something, you turn and there is no one there! You just need to be specific in your needs and tell people what you need and don't need from them. Of course, everyone runs the risk of offending someone, but this is about you!
I had to tell my good friend that the smell of her perfume made me nauseous. I also had to tell her that the smell of her clothes made me want to puke as well as the smell of when she came to cook for my family. Of course I was as polite as can be and blamed everything on the chemo (which is the blame!). She now cooks for me in her own home, makes one big oven casserole for the boys for the days after chemo and she comes to stay with me in those days as just a person to be near by. She is a smoker and although my situation should probably be giving her a big wake up call about her lifestyle choices, I note she will still duck around a corner and smoke a cigarette when we are out together. And of course I bitch and yell at her and tell her not to believe she will be spared a horrid dx at some point in life --- nice friend, aren't I?
I asked another friend to run an errand for me and basically she told me no. She'll come by with beautiful flowers and offers to take me to lunch or bring lunch to me, but the one time I specially asked for something I was met with a comment from her which pretty much said she wouldn't do it. In her defense I don't think I was perfectly explicit in my request and don't think she has the foggiest clue that I perceived her comment as a refusal to help.
We shouldn't second guess anyone's intentions, I suppose.
HOLY CRAP! Yes, in literally! Yesterday I went for a colonic. WOW! I must admit that I feel 1000% better! Nothing like clearing the dead chemical laden old cells from the body. I had never done anything like it before. Not messy, all contained in the little machine and sure a bit weird --- not as much as the patient but wondering why the operator chose that line of work, but anyhow, I would highly suggest them to everyone!
Erob -my mustache is still hanging on tight! But any of the erroneous chin hairs are gone
Another oddity is that one armpit (the one I can shave) is as smooth as a recent waxing whereas the neglected one that I don't attend to is still keeping itself warm, so to speak. You could try using castor oil on your eyebrows and lashes during tx. I know castor oil helps hair growth (keep away from your lip!) but wonder if there is some protective action in slathering it on brows during infusions. I just read on the cold capping thread that one woman's brows never ever grew back! HORROR!!!!!!! I don't even want to think about that! Someone else had mentioned chemo induced acne. Yup! had it really bad after 1st infusion but not after 2nd. In fact, my skin is so soft now - I did a nice scrubby wash and sloughed off all the dead skin cells and although my wrinkles are more pronounced, my skin looks great! A friend had told me that chemo is like getting a new sheet of skin -- new and unadulterated - best facial according to her. I only use rose hip oil on my face and on my scars. Totally natural and promotes healing. I've only used chemical free products for years on hair and body ---- guess it didn't matter much, huh?
Today I have my ovary scan. When I did my PET there was "activity" on an ovary. I've done a scan since, but because I was still getting my cycle it also showed "activity" but is believe to be a normal functioning ovary. Now that I've had two doses of suppressor, it should have silenced the system. I'll know in a few hours. Needless to say, I am worried sick. If it is anything else, I go back to the drawing board. Fingers crossed.
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Today is my final day of my first round. I was tired yesterday. This is the most I slept in a while. I am ready to remove this pack and fearing when they remove the port needle. After all it has been in place since Tuesday.
I'm anxious about the days following chemo. The unknown and then knowing each round will be different.
The Magic Mouthwash and nausea medicine is helpful. I am preparing myself to cut my hair. I am not confident in the cold cap since I have four days of chemo each cycle. I ordered my cold socks and will get gloves.
Wishing the best to everyone.
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I've picked up a bug and it is the worst! I'm struggling to keep my fever down, and I'm surprised I haven't coughed up a whole lung yet. I spent the day at urgent care, and now I just have to wait it out. Ugh ugh ugh. I feel so terrible! Stay away from germs, ladies!
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Amelia, best of luck today! I’ll be thinking of you!!! Big hugs.
Okkate75 - hope you feel better soon! Cancer or no cancer, ‘tis the season of colds and flu...
Olessya - don’t be too hard on yourself. I can’t imagine how you can run around after a toddler when you are not feeling well. I know how much work little kids are. I felt bad for yelling at my daughter (almost 11) the other day because she couldn’t find her hat. Every. Single. Morning. The same story. It’s Groundhog Day here and not in a fun way.
Take good care of yourselves, ladies, and have an amazing weekend!
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