Starting Chemo in September 2017

MzPriss

My tumor can hardly be found after two rounds. That's encouraging, makes all these side effects worth it.

I walked a 5k for breast cancer yesterday.....and then came home and slept for 4 hours. My team raised almost $800 towards local research, treatment and wigs. Komen left our state, so the local non-profits are scrambling to fill that void. It felt good to participate with so many others touched by this nasty disease.

My hair is all but gone. The razor stubble is now falling out. My head is a little flaky still, and has some pink spots that look like pimples. Ugggh. Why can't I have a pretty bald head?

OCDAmy

Iced, you would think if it is shrinking that tumor so much that the lymph nodes would not be affected. I have read other women say the chemo gives them really bad headaches. Try not to worry if you can. It doesn't do us much good does it? Easier said than done I know. I still have my crew cut but have a huge receding hairline. How is everyone doing with your eyebrows and eyelashes? I have noticed a few lashes leaving me but I have enough there that when I wear mascara it looks fine. I have had to start filling in the eyebrows but I still have them. It is interesting that nothing seems to be growing. I haven't shaved my legs or armpits for quite some time and other hair is leaving me too if you know what I mean?

I am feeling better and back to work. I hated having to take the sick days last week as I was saving them up for chemo and next year for my reconstruction. Want to get #3 over on Friday. I will only have one more treatment after that and then I begin radiation.

"Optimist: Someone who figures that taking a step backward
after taking a step forward is not a disaster, it's a cha-cha."

Travel_Girl

OCDAmy -- I am going for round #3 on Wednesday - tomorrow/Tuesday is my "day 0" - steroids, labs, MO Office Visit - here we go again ... i feel like I am in the movie ground hog day. My only hope is that the movie plays the same way as round 1 and 2 - and I manage the SE's and infections.

As for hair -- I still have eyebrows, and eyelashes - I can tell both are thinning a little. I read on other threads that some people get the mink eyelashes all thru chemo -- they last 2-3 weeks and then you go in for refills, so I am considering those. I would have been too scared earlier in the process - now I am all about faking it through this ordeal (safely) - and eye lashes have always been a thing for me. Maybe wait until just after Round #4 - post high infection period or the week right before when my WBS are higher. I am still researching. The last thing i want is a silly eye infection to delay the chemo. Decisions, Decisions ...

I am using ESS on my eyebrows per your tip - 2x per day - no idea of it helps or not, just keep applying it just in case

As for the other area -- I was checking on that -- and yep still there. Years ago I had laser on my legs, under arms, so hard to tell.

Iced - the zofran gave me horrible, skull cracking headaches, during round 1 - so round 2 I had a replacement -- it was much better - maybe ask about different meds? Either way, your oncologist/chemo team should be making this as comfortable as possible - so keep asking for help -- be a loud voice for yourself. Be your own advocate and don't be afraid to ask. And ask again.

Mojo - on your day 1 night, what did you eat that day? I remember reading others posts prior to my first chemo day and some people said they felt great that day - so they ate some things (like a double cheeseburger) and regretted it - did you eat blandly the day before/day of chemo? Just looking for things that might help you round 2.

I eat pretty bland & healthy right now in general (everything tastes blah anyway) -- I was so excited this week to have a craving for sushi rolls, that I stopped on my way home from working out and had a 'all cooked' sushi roll - oh, it was bliss - it was my first real food craving and although I could not taste a lot of it -- the salty sauce and ginger and act of eating of one of my typical favorite foods at a restaurant with chopsticks was like a moment of normal in this craziness. It was 3pm and I was the only one in the place - didn't care - paired it with some asian tea (despite being offered and momentarily tempted with the happy hour drink menu) and chatted with the staff like I was just a normal frenzied person wearing my workout clothes all day on a weekday. It was bliss

Back to reality - my goal is to constantly push fluids and some days water just doesn't taste good - despite infusing with mint and ginger. What is working for you?

JD_RN

My peeps - I'm back - sort of . . . I have missed you all and have just tried to catch up on your posts and although people are having side effects it seems though we are all handling them well and together which is what I think keeps us all going on a daily basis. Here is the rundown on what has been happening with me . . . . perhaps I will do a numbered list for something different and to provide you with minor amusement:

1. My liver although still angry as of a week ago is getting better and my hepatologist opined on that day that I have no weird liver diseases or issues and that he believes the elevated liver functions are from the abx treating my slime and he thinks that I can do both chemo and abx at the same time without permanent damage (from a liver perspective) so he cleared me for chemo so . . .
2. Then I went to my MO to get labs drawn the next day for chemo and all was groovy *except the angry liver so my MO approved me for chemo the next day at a dose reduced 80% for the taxotare given of course my liver, but full on for the "C" part and then . . . .
3. I started Decadron (steroids which help with the edema - really they are worried about pulmonary edema from the "C" part) the night before chemo, and it was not so bad except that I was up every 3 hours during the night to pee - now I am a hyper-hydrator and have what I like to call a "trucker's" bladder - it holds like 800 ccs - so apparently the Decadron was a very potent diuretic so I woke up tired but sort of ready for chemo which was scheduled for 3:30 pm and I waited . . . .
4. AND THEN I HAD ROUND # 1 - iced fingers and toes but not head and the whole thing was pretty chill - I had a few nose itches and a little neuropathy in one pinky finger but left feeling pretty good. Did I mention THEY TOOK OUT MY PICC LINE - I AM FREE!!!!!!!!!!!!!!!!! Went home, had something uneventful for dinner, took my meds and tried to go to sleep . . . . but wait
5. Up a fair amount to pee, but stayed super hydrated and felt pretty good on day #1 after treatment (even took a run) - removed neulasta shot pod at 10:30 pm (took claritin and had no bone pain) take that chemo I said - but then chemo said - HA . . .
6. Since then I've had to balance the nausea meds and the constipation they cause because i have a super snarky GI system to begin with and have been managing it for 27 years and know how sensitive it is - so I had some bad nausea bc the meds make me too constipated even though I use Miralax, tons of water, daily continued fiber therapy and PRUNES (ok I just became my dearly departed grandparents) and I can't have that type of "back up on the beltway" - it makes me feel sick as well - so I gutted through a lot of nausea and my MO is going to change the nausea med given to me IV for round # 2 and managed to go to Yom Kippur break the fast on Saturday. But I also went back on my Biaxin abx for the slime Saturday morning and that is a GI killer so it only took 30 minutes after taking it for me to feel like I had razors in my stomach. And I had just gotten the constipation under control yesterday morning when Biaxin decided to ruin my day . . . .
7. Swing the pendulum my chemo compadres and go from constipation to the big "D" - which I think is caused not by the chemo so much as it is the abx + a overreaction by my GI system to the constipation - Grrrrrrrr . . . . but I don't want to take any "D" meds bc the pendulum will swing back in the other direction so I am hydrating and letting my body try to acclimate to the abx again. The "D" is not so bad I just feel like I have "crap" in there from 10 years ago deciding finally to leave the happy home of my colon! And as if that wasn't enough . . .
8. Tonight I'm achy and running a low grade fever but have been watching it and feel just run down and not actively sick or feverish. Have a headache which I have had off and on since chemo but otherwise feel ok - just sort of Meh. Made awesome egg salad for dinner which I had on toast - been really having bread and some lactose free dairy today - really all I have wanted since my tummy hates me but I'm about to turn in because I really feel my energy dropping. Have not been sleeping well and have had some really bad restless leg and knee pain which is just part of my life but am trying not to take those meds bc also constipating . . . That's the excitement here - not too many bad SEs so far and I have been walking every other day between 2 and 3 miles. Today I vacuumed, washed dog beds and cleaned the house as my exercise - lol.

OK so here's the weirdest thing . . . I was training for a marathon when I was diagnosed so I am really used to how my body works and metabolic rate etc and I knew before I had symptoms that I had an infection bc I was burning an insane # of calories while not doing much and not having a fever. Ok so things had normalized more or less to a regular level, even when I was on my drug holiday, but now I am back to burning a ton of calories. I'm burning close to 4000 calories a day sometimes over. I know that my slime burns a lot of calories but I wonder what effect chemo has had on all this.

Thank you to whomever said the thing about the burned tongue - I have had that for the last 3 days and I have been trying to remember when I burned my tongue - good to know its some random SE! Hair still here - had to shave my legs last night. Maintaining my weight so far so although I feel like I look really fat it's just the dysphoria of having NO BOOBS and then them taking the expanders away bc of the slime. Port scheduled for 10/17 day before round # 2 and they will leave it accessed with a needle so I don't get poked on a healing and sore port. And now that I have updated you all on my cancer channel - I'm calling it a day. I will try to be better about posting more regularly and opine on things about which I might have some information - life outside of the cancer sandbox has been complicated.

Love you all - JD

Travel_Girl

JD - finally first round of chemo -- doin' the chair dance.

Yep - swinging from the big C to the big D -- ride the wave -- hoping to keep it always toward the D side ...

Mojojennijo

travel girl, I did each a hamburger during infusion. Think maybe that could be it?

Travel_Girl

Mojo -- I don't know -- what I know is -- you have to try different things - and that was one of the tips I took away before my first chemo - eat blandish foods even if you feel ok - as it comes on quick. Those that indulged w/ burgers, mexican, etc. regretted it (or those that regretted it shared ).

Either way -

Process of trial and error - on #2 go w/ crackers, soup, noodles with more plain sauces, etc. See it if helps - recommend starting the day before -- just to see if it helps

MzPriss

Good to see you back JD! I too live in fear of that pendulum, it is what had kept me from taking the meds for D for awhile. I think I'm at a balance....for now. The constant D was almost debilitating.

Travel Girl: Sushi sounds good. I only do the veggie kind....I wonder if my DH would humor me with some tonight? I've been mostly sticking to soups, the occasional chicken strip and yogurt. All things that feel good and I can mostly taste.

toughcookie_21

JD, good to hear that you were able to get started with chemo. Hang in there!

My tongue is a mess! I have sores all over it and it hurts so bad. I didn't get the bone pain I was so worried about with Neulasta, but I still have the big D. I think it's just something I'll have to deal with until chemo is over. I wonder if the lining of my stomach looks like my tongue? If it does, no wonder I have diarrhea.

Travelgirl, I have been craving sushi too, specifically tuna. Every time I see pictures of sushi or someone talks about it, my mouth starts watering. Maybe some veggie sushi would curb my cravings. I craved sushi while I was pregnant with my son, too. Actually a lot of how I feel on chemo reminds me of when I was pregnant with my son. He made me very sick, but was such a good baby. I breezed through pregnancy with my daughter, but she was not so easy as a baby.

Icedgem

So here I am in the chair having treatment #3. I am so glad that I'm on here with all of you now, hearing about the side effects and hair issues, we are all pretty much going through the same stuff. At times I wonder if is just me. I swing from the big 'C' to the big D' and it really is a balancing act to know when to take the laxative and how many times before you need to take the Imodium.

OCDAmy- i have calmed down since my last posting, thanks to the kind words of everyone on here. I am surprised about the inflammed lymph node too, but I hope it is due to the side effects of something and as it was my MO who found it, and he said he was not too concerned at this stage, I should trust him. I will mention it again when I see him again in 2 weeks. Hopefully the headaches will calm down with round 3 as I'm having the lower dose taxotere due to high liver enzymes and they have just prescribed some codeine for the headaches .Your hair sound just like mine, I now have razor stubble at the back and sides and have receded almost completely to bald on top. I look like an old man!. I want to rest of it to fall out now, and by the look of my pillow in the mornings it won't take too long!- I tried wearing a sleep hat, but it got too hot. My eyelashes and eyebrows are thinning and I have gaps appearing and nothing is growing at all. I am frantically trying to hang on to my brows and lashes, but I expect I'll need to start filling in the brows very soon. I actually quite like not having to shave my underarms and legs, and the money I'm saving on bikini waxes!!

Travel Girl - I hope everything goes well for you with round 3 tomorrow. I had heard that the Zofran causes headaches and also constipation. Strangely I haven't needed to take the zofran at all as yet, I have had no sickness at all. The chemo nurses have swopped out the Aloxi anti- nausea drug for Kytril and that has been the only one I needed. Apparently Aloxi is another drug known to cause constipation. These drugs are another balancing act!.The sushi roll sounds awesome, these steroids have kept me with an amazing appetite through this, need to keep the excercise up though to keep my weight even.

JD RN - I'm sorry that you have been having a rough time too. I also have an angry liver right now, having a liver function test next week and hope that it may have recovered a bit from my reduced chemo dosage today. Drinking tons and eating loads of beets and walnuts and anything else that is good for the liver. If you have any other ideas what I could try I'd like to know. I also have a very sensitive Stomach. I actually caught c-diff infection last year from a course of anti- biotics following root canal/ crown treatment. Talk about bad luck!!. Anyway that left me with several problems and I'm am now lactose intolerant. I take lactaid pills where needed for that naughty desert or cheesey treat, but at home I have all the dairy free products. My MO is trying his hardest to keep me from taking any antibiotics during the chemo. The big D is a worry, If Imodium work then I know the c diff has not returned. Taking probiotics and drinking kefir which helps. Just something else to worry about!

Anyway must go, the man with the guitar who sings for the patients has arrived, I should show some interest.

Hugs to everyone.

Meg101

Iced - I've been having bad headaches too. I have a history of migraine headaches so I was prescribed Imitrex (aka Sumatriptan). It is wonderful. It zaps the headaches within 15 minutes. Nothing else works, not even Vicodin, Advil, etc.

JD - You have such a great attitude considering all that you and your liver are going through. It's like walking a tight rope. Balance is the key. At least you were finally able to start round #1.

Travel_Girl - I laughed at your choice of words for intestinal SEs, "Doing the chair dance" ..... "swinging from D to C". I will probably think of your words every time The Chair Dance hits. It'll make me smile.

Amy - Glad to hear you're feeling better and back at work. I cannot imagine working during the chemo process. Your dedication to the job is admirable. I, too, have started losing eyebrows and lashes. I assume all hair will be gone within the next week or two. I plan to hide for awhile. Honestly, I might be afraid to look at myself. If my dogs don't reject me, then I might go out. I'm so vain.

toughcookie - The burning tongue, mouth and throat are surprisingly awful in the sense it's so annoying and uncomfortable. I used Biotene toothpaste, and rinsed my mouth with the salt & soda water which kept an actual infection/sores away, but it was a close call.

rljes

Hi All.  Met with MO today and couldn't get answers (3rd appointment) so I am to see the Pharmacy Hematologist for an hour of 'class' time to discuss Chemo. (asking for new MO) Probably start first week of NOV, but can I stay here with you guys till then? 

Meg101 - I to have chronic migraines (3 to 5 a week) and Imitrix works great.  But I'm afraid after chemo it won't.  So is Imitrix still working for you during chemo? 

Getting all my notes together to go on one big shopping spree.   Thanks again for all your stories. 

Travel_Girl

My MO confirmed the burnt tongue feeling is in fact part of mucositis (I don't have mouth sores anywhere else, so I didn't correlate the two) - they told me to rinse more -- i didn't do it as much the second cycle - dang!

I have been searching how to 'cure' it -- it does go away after chemo,

I am just hoping to get rid of it during the next cycle - otherwise I will have it for the next 7 or 8 weeks ..

I will be rinsing fanatically - while I do a chair dance and ride the wave of C to D. Yet another alarm to set.

Ok ladies let's do this -- manage those SE's!

Mojojennijo

I'm starting to feel better. But it's 7 days since neulasta and my legs still ache. Also have really bad muscle cramps. Is this to be expected this long after the shot?

Also my 5 year old is sick with a terrible croupy sounding cough, fever, vomiting, and sore throat. I am a ittle worried. Anyone have tips on caring for a sick child while going through chemo?

Binniebin

Anyone get pre migraine symptoms after bone scan injection? apparently not a side effect, maybe I'm just over tired.

mojoJennijo, caring for sick child, really hope you have someone around that can help though when they're sick mums the only one they want, I feel for you

Re nausea, who's tried acupuncture? I have a few pts who found it really helped. My MO has told me just to get in and get a bag of IV fluids and IV anti nausea drugs if nausea hits. Ive seen it work so many times so I'll definitely not hesitate

muccositis, we advocate salt water or sodium bicarbonate mouthwash after meals and bed time, or alcohol free mouthwashes. I'm thinking hydrogen peroxide may be too drying maybe counterproductive.

Keep fighting the good fight and sharing our burdens.

JD_RN

Peeps of the chemo club -

This is a super quick update bc I need to get in the shower and get out of the house but check this out - this is serious. Yesterday was a Very bad day. Unrelenting back spasms and bone pain from the Neulasta and chemo. I could barely breathe the pain was so bad and there was just no break from them, they were constant. Now I'm not a wimp but it comes to pain but this was frightening because nothing I did either medically or using heat helped at all. I was in constant contact with my oncology team and we decided to try some oxy and if that didn't work they wanted me to go to the ED for IV pain meds. I took the oxy and a very hot epsom salts bath last night and finally got it somewhat under control but was not even close to pain free and spent most of the night afraid to move bc that seemed to fire up the spasms, but it was under control enough that I didn't have to go to the ED.

I'm much improved this morning just exhausted from everything - I have to take a shower shortly and go to gtown for the labs I was supposed to get yesterday and then I have a meeting with my breast surgeon at 10. After that I will come home and rest. I had been taking Claritin to prevent the bone pain but clearly that all went to hell - and I was 6 days after treatment. My MO team gave me the following information which might be helpful:

The Neulasta causes your bone marrow to actually crowd till the new WBC's get sent out into circulation and the Taxotere causes bone pain - so those 2 meds tend to be a rough combination for bone discomfort.

So that's the 411 - I feel like I have been run over by a steamroller and am hoping to not have to take any more meds but we will see how the day goes. I will definitely be sleeping a lot today. Will try to check in later. And will rinse more, actually as I upped my rinsing my tongue does feel a little better. . . . . JD

Milkweed93

Mojo and Iced - I have these weird lumps in my pits but mine are red an some come to the surface. I call them pit zits. I used to get lumps (not zits tho) in my armpits during my period and they were connected to hormones. I would gently lightly massage them and that seemed to help. The zits weren't so bad this time - I only had a couple and they were smaller. I also didn't have Neulasta this round but had Zarxio instead. Just wondering if that had anything to do with it. Hmm.

JD - Good to hear from you! Ask your MO about Zarxio instead of Neulasta for your next round. It did not give me the same intense bone pain or headaches or low grade fever. I was still a little achey, but didn't need the Claritin or Aleve. The only drawback is you have to go in every day for the shot for 3-5 days in a row. Not a problem for me bc I live 5 minutes from treatment center.

MzPriss - That is great that your tumor is shrinking! My razor stubble is still there for some reason. Thought I would be completely bald by now. I'm patchy though. Eyelashes are going, but I still have my eyebrows.

Milkweed93

I just realized I didn't have my profile on "public" and that my chemo reg wasn't viewable for you all. If you all feel comfortable doing it, you can go to your profile page and make it public so we can all see. ONLY if you are comfortable tho.

OCDAmy

Hello to everyone, good to hear from all of you and glad to get an update on you JD and that you are moving forward with treatment. I really am grateful to have all of you to share experiences and suggestions with and get moral support that only someone going through this can give.

Travel Girl, good luck with #3 today. Hope it is uneventful.

Make sure to check your tongue if it is feeling burned. Each time mine has felt that way my tongue was covered in an icky white blanket (thrush).

rljessu, stick with us even though your chemo is not for a bit.

Yesterday I was walking out of Walgreens after picking up my prescriptions for post-chemo on Friday and had on high heels and a dress and took a nasty stumble in the parking lot. Ouch! I don't know but can chemo make you clumsy? I have a few bumps and scrapes but now I am having some pain in my rib cage under my right expander. No bruising or swelling so I think it may just be a muscle strain but may need to head back to the plastic surgeon if it doesn't get better, I am worried I messed up the expander. It's always something.

This morning I was driving through Starbucks and the gal at the window told me the man in front of me paid for my order. With all that is going on in our country and in my personal life, I was so touched I started crying. I paid for the car behind me, I hope it keeps going today.

Take care of those side effects and if you feel bad remember to take your temp!

Travel_Girl

Amy -- yes the chemo and the meds can impact your balance -I work on this at every workout. Take care and maybe chg into flats - or do what I do - go to the Walgreens drive thru

hopebringscourage

Round 2 for me Friday! Hoping the side effects will be less. Having 1 good week in between really seems to help "forget". How long does everyone rinse? I quit soon as I felt normal.

Shaved my hair last night as the shedding became to much emotionally. Certainly males getting ready quick. Anyone have a favorite hat or site they order items?

Hope everyone is doing as well as to be expexted!!

hopebringscourage

Round 2 for me Friday! Hoping the side effects will be less. Having 1 good week in between really seems to help "forget". How long does everyone rinse? I quit soon as I felt normal.

Shaved my hair last night as the shedding became to much emotionally. Certainly males getting ready quick. Anyone have a favorite hat or site they order items?

Hope everyone is doing as well as to be expexted!!

OCDAmy

Hope, I bought a few cute hats at my wig shop. I also bought several hats and scarves from headcovers.com. I am really loving the black ball cap with hair attached that I got at my wig shop. I may buy another one with a dressier hat.

toughcookie_21

Good luck today travelgirl & Friday hopebringscourage!

Icedgem, Mojo & Milkweed- I have cording under my arm from where they took out the lymph node. It is hard to the touch. Do you think yours could be the same?

rljessu- stick with us! I know I'll be getting chemo until the end of December and I think others here will too. We won't be going anywhere soon;)

Is anyone else having a very hard time concentrating? I went back to work a few weeks ago and I'm just taking off the day of chemo and 2 days after. I am working from home where there are many distractions, but I've worked from home before and never had such a hard time staying on task. I guess this is chemo brain. I hope it goes away after chemo.

rljes

Hi All - Toughcookie - are you still having problems with your armpits since you mentioned 'cords'?  I have the 2x4's (Iron Bra I guess is the technical term) and asked my PT today if they will ever go away and she said 'Maybe'.  I'm trying.

Got my Hair cut real short today. Like a pixie. Now to find some hats. I don't want to order over internet - I want to try them on, Before I have no hair. My hairdresser said she would shave my head when it came time and how to stencil eyebrows.  To bad I can't get eyebrow tattoos.

Icedgem

Hope - I bought some cute hats from The American Cancer Society shop ' TLC', I especially like the beanies they do as they are thin ( I live in Florida and some of the hats are too thick & hot), also they have a bit that covers the neck, which I quite like. I have had lots of compliments on them and they are very comfortable to wear. There is also a good website for 'Survivor Room' and the chemo beanies on there always have Free-shipping and they have a bigger selection.

OCDAmy

I found this Etsy shop that has hats with real hair attached. I think I am going to buy one of these, they have a selection beyond just ball caps.

https://www.etsy.com/shop/JodiHat?ref=l2-shopheade...

Meg101

rljessu - Yes, the Imitrex is working great during chemo. I start with 25mg. If that doesn't work within 30 minutes, I take another 25mg. I haven't needed more than 50mg per day during chemo. I mainly need it the first 15 days after each chemo infusion. I, too, have had migraines most of my life. Imitrex was a God-send. It was the only thing that helped those headaches. Sorry to hear you have them too. Chemo definitely triggers migraines.

Meg101

toughcookie - I'm having concentration problems too. Yesterday I got up to go to the bathroom, but before I reached the bathroom I forgot what I got up for. So, I walked through the house for a minute, then I felt the need to use the bathroom which jogged my memory as to why I got up in the first place. Unbelievable! Chemo Brain is real.

rljessu - I will be going through chemo until the end of December so it appears several of us will bring in the new year with each other.

Amy - Thanks for the link to the Etsy hats. I plan to attach hair from an old wig to a baseball hat I already have. If that doesn't work, I'll consider Etsy.

hope - I swished AND gargled for about 30 seconds 3 times a day, including before bed. The gargling really helped my throat and tongue.

iced - I'm with you when it comes to light weight hats and head coverings. California can be warm or cold during the Fall, plus my head has been sweating since I started chemo so a light weight head covering seems preferable. However, a bald head can get very cold I hear, so maybe a heavy backup hat would be a good idea.

Mojo - Sorry to hear your little one is sick. Wow. That must be quite a challenge. Keep Lysol spray handy so you don't catch it. The last thing you need is a virus during chemo, but I understand your instinct to protect your little one. Prayer to both of you. Keep us posted.

Mojojennijo

toughcookie, I haven’t had any surgery yet. So I’m not sure about cording.

Meg thank you for the prayers! Today had been a challenge!