Starting Chemo in November 2017
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NonaHope-I have heard that and I read recently where someone had to take a break from T because of the liver reaction.
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Shopping day was good, didn’t get tired but I was freak every time I had to touch something. Hand sanitizer after everything and didn’t get myself crowded between too many people. Gave myself bangs...that was about 10 inches I cut off.. baby steps. I may to a pixie but I haven’t decided yet. My hair is so thick and curly I need to find the right one. But the bangs will cover the forehead breakouts.
Tina
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Hi, all. It's been a busy few days since I last checked in!
I had my "nadir visit" for lab work on Thursday and everything checked out fine. My WBC count was actually elevated, but the PA said that was probably due to the Neulasta. So my MO is going to evaluate whether I need to have it after my next infusion.
Re mouth sores: The PA told me that "magic mouthwash" is mainly about the lidocaine. In other words, it's to treat pain; doesn't really do anything to prevent/heal them. He said to continue the mouth rinses with salt and baking soda and Biotene to ward them off. I had tingling for the first week post-infusion, but nothing more serious developed and it's pretty much gone this week.
Had 2 PT sessions last week. I feel like it's helping but it's pricey and not covered by insurance so I will probably have to taper off to once a week soon and just do exercises and lymphatic drainage on my own at home. Also had a checkup with my plastic surgeon, who agreed with me that bruising/swelling seem slightly worse since I've started chemo. I was actually fairly uncomfortable yesterday, which hasn't been the case for a few weeks. Took a Tylenol 3 and used an ice pack last night and things are better today.
Had lunch with a girlfriend yesterday and just picked up an Xmas tree with my husband. We're going out for a date night dinner this evening to a casual little place in our neighborhood. I have done little or no shopping and plan to do some on Mon or Tue. Taking advantage of feeling well while I can!
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nonahope, I would guess it’s the Taxol too. It’s known to effect the liver pretty radically in some people. I’m going to keep you in my thoughts until your US though!
Orangedaisy, you are handling your rash much better than I would have. Seriously, this is a case where I would have totally not followed any advice I would have given to others. Good on you for keeping a rational head!
I am hoping it clears up quickly. Blair2, hopefully, your hair will stick around for a long time! I have always had really fine hair and i thought it was pretty thin to begin with but the lady that used to dye my hair always said I had a LOT of it, it was just fine. I didn’t believe her until it started coming out. It really shed for a while but then i started getting some bald spots too. Oh well. Let’s just hope it comes back in some form (hopefully on top of the head and not the chin).
As for your back, it could be from your fall. Some injuries take a while to manifest. Or it may be totally unrelated. Have you had back issues in the past? I’ve had a bad back for many years and pains can be triggered from sleeping wrong to picking up something the wrong way. Just be gentle and treat yourself to a day or two of rest. I once sneezed and threw my back out. Backs can be fickle.
And welcome to the new ladies. This is a pretty great place for advice.
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Wow - lots of news today from all of us special ladies!
Nonahope - I hope the taxol is causing the elevated enzymes in your liver. I can sure understand your fears on this new issue. Best of luck on your upcoming appointment.
Charliegirl - welcome here - we are on same drugs, you’re a bit ahead of me. I hope my 4th day on my second round is like yours. My 4th day was my worst day. I feel normal now (Day 9), but no energy to want to do anything.
Meowmmy65 - will check out the wrap site. I bought two wigs and just laughed at myself - I had to return one. I looked like Ronald McDonald having a bad hair day with the one I returned! Glad the a Benadryl did the job for your flushing.
Orangedaisy - hope that skin flare clears up fast. Good thing it doesn’t bother you. It looks as if it would hurt. Ouch!
I accomplished very little today - washed clothes, ironed a few things, changed my bed sheets and then pooped out in my easy chair and started to embroider a project I’ll probably never finish. We had a mysterious boom sound today over central FL, and my friends textedwondering what caused it. Tina - did you hear it too in Clearwater? It was a bit creepy.
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Frozentoes- once I moved myself around this morning, my back wasn’t as stiff, but I think this is more of a muscle pain. I haven’t taken anything for it, but I’ll be ok. Tomorrow I plan to clean a bit, but not going to push myself too much. Never had much back problems, but it could be due to that fall
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Hi Everyone - Day #12/ Chemo #1
Its been a few days - but I'm doing pretty darn good today.
Day 1-3 was great - On that steroid high. Little heavy footed and Clumsy.
Day 2 Neulasta pod went off - hardly any bone pain (Disclaimer : I already have bone, Muscle, Joint pain from my Auto Immune Disease - it just wasn't any worse than normal pain)
Day 4- CONSTIPATED & Bloated, and cramping. No Nausea. (Taking Compozine and Ativan regardless)
Day 5 - I thought I was going to die from Constipation - but didn't. Relief that afternoon after taking EVERYTHING. (Colace, Smooth Moves Tea, Fiber Pills, Prunes and Maralax)
Day 5 - Calcium Deposits on my finger tips - very painful (Calcinoisis) Severe Diarrhea.Day 6 - I feel Ok - EXCEPT SEVERE MOUTH SORES. I have been swishing with Baking Soda/Salt concoction and Biaotine dozen times a day from day one. I thought I would escape this one.
Felt Like A dozen Tiny Razor blades cutting inside of my mouth - Sores on the insides/outside of my lips - I couldn't eat or talk. I was sucking on pop cycles, icecubes, lozenges and swishing and gargling. NOTHING HELPED> kept getting worse.
Day 8 - Huge Lump on side of face inside mouth. (Plus sores and "cuts" getting worse)
- I get a Jury Summons Letter !
- Trying to balance BIG C and BIG D
Day 9 - Called for Help about Mouth : MARY's MAGIC MOUTHWASH - Thank God. Within 24 hours I got relief. It has Lidocain and Anitbiotics in it. CVS made it up. Cost with Insurance $50 (Shhhhhh - I would have paid double)
Day 10 - Nose is running - just pouring. All Mouth Sores are healing.
Day 11 - I FEEL GOOD. I have so much energy. WHAT is up with that? Mouth sores are just about gone.
I have a lot of questions/comments to address - but I'll do that in next post - this is a little lengthy!
take care everyone ! rj0 -
blair2- I didn’t hear it but I was in the mall most of the day, I saw it on the news on FB. We have been having a lot of booms out here lately, to the point it rattles the windows, my mom was worried about sinkholes because they say it makes that noise but apparently it was heard by a lot of people. Mcdill base isn’t far from me and the concluded it was their jets doing it. Are there any bases nearby you? It was pressure freaky the first time it happened.
Tina.
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Rljes - those mouth sores and the lump had to have been awful! I’m glad though you’re doing so much better. How many days do you have until next treatment? Enjoy your extra energy while you have it! Maybe the next treatment won’t effect you as badly. At least you will be on guard for signs of these problems if they should happen again. The first treatment is a learning experience
Tina, the mystery boom happened at 1:55. We have Draken Military aircraft company here, but they sell jets to military applications. They don’t fly around breaking sound barriers though. The news said it was heard from Pasco, Hillsborough, Polk counties all the way over to Lake Wales. It was loud just like a building expoding near by. It caused me to look outside for smoke. A bit creepy is all I can say that there’s no explanation.
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Hi - Continuing on....
Meowmm - You had your First 'Uneventful' Chemo - Great! I didn't have any rash. I was surprised. Question Plz - you said you take Trazadone to help sleep - what is the dosage? I have some, but never tried it, and need an idea how much to take.Mom4gma - No Freaky BM's for me - just juggling Big C & Big D. Little gassy like garbage - probably coz I've been eating Garbage.
ALSO - question to all - Why do we want to FLUSH out the chemo as as possible with drinking lots of water - if the chemo is killing the cancer, wouldn't we want it to stay in as long as possible? (weird question, I know)
ALSO - about the Chemowave app. I can't figure out how to enter symptoms. They just have a few to choose from and mine aren't on the list. ???? Small world - I used to live in Clearwater. Opened the TGIF by the mall as a youngster.
ALSO - you mentioned you said on day 10 going shopping 'I think my numbers are pretty good to go into public' - How did you know what your numbers were? And what should they be to go out in public?Orange Daisy - Yes, there is a CLass Action Lawsuit against Texotere. I asked my MO and he laughed it off. Easy for him. At least we'll be rich (?)
Frozentoes - Great Picture- Your so pretty. Yes, Indeed a nicely shaped head!
Margari - I Respectfully disagree with your MO about Magic Mouthwash. If you read my previous post - My Mouth was getting so severe I almost had to go to the Hospital. I googled it and there are different ingredients - so perhaps he was referring to the one that just had Lidocain, and nothing else to repair and heal.
I only went to PT a few times and she was kind enough to print out a accelerated program. I bet it was nice to go out on a date with Hubby!
Welcome Diveslikeagirl & CharleyGirl!
My hair is starting to fall out - But I really don't care.
Take care everyone - have a nice weekend
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rljes- for the Chemowave app when there is a symptom I have that’s not on there, after I pick how I’m feeling for the day I go back in there and edit it and gives you the option to add a note so I just put a not in there. Especially if you are at less than 100% for that day a note gives you a reason for that. When tracking your numbers either weekly or monthly you will see the drop in your trend which is mainly what I am watching plus what’s meds I take on what days.
As for numbers, your counts drop around day 7 or 8 then they are supposed to start trending up, most have their nadir done at day 7, unfortunately my MO was on vacation so I couldn’t get mine done on day 7, mine is getting done on day 12 which, whatever it isn’t going to be accurate anyway. That said I am kinda winging it so I would think you would feel tired and generally off of your counts were down. Which I don’t, so I am assuming they are fine. I did take major precautions the whole time I was out when it came to touching things and public restrooms, etc. the escalator just freaked me out. Idk how many people touch that thing. You see germs, and cooties everywhere!!
Tina
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I hope it went well for you! I also started same treatment on October 25 and ready for my second one Monday. I used cold cap and have so far not lost any hair! Side effects were tough but I kept working and I also managed to go on a Busines trip ... just brought a lot of drugs and wore a mask on the plane. This community has been amazing and I gained many ideas of how to push through this (hopefully with my hair) in the most sane manner possible and with managing side effects. I am curious if people who used cold caps through 4xTC managed to kept most of the hair?
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Trazadone for sleep... 50 mg. It was originally used as an antidepressant, but people found it more effective for sleep, without morning grogginess. My daughter used it, and highly recommended it. I'm finding it very helpful.
I tried chemo wave... I'm better with paper and pencil for this. It's easier.
Visiting the lymphedema clinic Tuesday for evaluation, but the oncologist already confirmed it and showed me the massage technique.
Are we having fun yet? Lol. I remain grateful for good drugs and amazing medical care.
Warriors unite!
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Thanks Mom4gma & Meowmmy - I think I need something to sleep tonight. I just cut off all my hair - took the scissors and whack - its about 1/4". My hair Follicles were really hurting. So I washed it and drenched it with Vit E. My Dog Truman is freaking out. (probably because I am)
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meowmmy- you can also get couple sleeve that would help out your Lymphedma. I usually wear my sleeve about 8 hours a day. You would need your sleeve when you work out. Ask you MO for a prescription so you don't have to pay for it.
Cat ati - in my July chemo group, we have a lady who used cold cap and it worked well for her.
Hi Blair how are you? Don't over do it, take care your back.
Nonahope - taxol does increase your liver enzymes, it happened to few people in our group.
Ladies, you are doing so well, so proud of y'all. Believe me there is the end of the tunnel.
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hey everyone. checking in. dose 5 of 12 done this week. regaining strength for dose 6 this coming week.
had a small bout with the big D last friday afternoon. must have been something i ate. but all good. taking it easy on food for now and trying to hydrate as much. but taste buds today are not fun. Still trying to figure out what can help. sometimes citrus and ginger don’t taste as good. and cheese tastes like plastic haha. fruits taste extra sweet.
dealt with mild sore muscles and mild bone pain yesterday. spent most of it sleeping.
hope99, i agree with Binniebin on this. take someone with you to your appointments. also being open to your MO about all these questions and the steps they’re taking for your treatment is key to minimizing all these worries. doctors follow a specific protocol for treatment based on type of cancer, stage, etc.while there is a general protocol they also take the patient’s situation under consideration because each patient is different from the other.
shaneswife i’m sorry to hear about the effects of chemo on you but you are in my prayers. i hope at least the kids make you laugh
frozentoes, congratulations on shaving your hair! I wear beanies a lot. it is quite cold without all that hair.
rljes, maybe truman will get used to it eventually, short hair i mean. pets are such comfort during times like these.
i spend time looking at pet videos sometimes and look at them (dogs especially) and think “what did we humans ever do to deserve dogs?” but also find myself giggling at silly wide-eyed cats.
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Good morning again - and today I’m definitely going to get things done around here today!
Canati - I’m trying to figure out your treatment plan with chemo - you said you started Oct 25 and are now getting your 2nd one Monday? (Maybe that was meant as Nov 25?). You were a close call on needing chemo. I admire you for working while going through this, I know I couldn’t do it.
Paulette - other than busting my lip with a bad fall, and chipping my front tooth throughout this ordeal, I managed to get through round 1 of 4. Tomorrow the stitches come out (going around looking like I have whiskers), and Tuesday I see the dentist. Keep us posted on your radiation treatments, because I want to know how that goes.
Mkn86 - Your strength getting through your many treatments have given the rest of us to carry on with ours. The Big D and constipation side effects are not fun, and hard to figure out what one should eat or not eat. Then if your taste is messed up, even harder. These cocktails definitely mess us all up in the digestive tract - ugh! I learned my lesson not to take the full amount of a laxative- that stuff is brutal!
This is Day 10 for me and I feel fine, except lack of energy has definitely thrown me off. Hope everyone has a good day
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nonahope, I had pre-existing liver enzyme raise, fully investigated with no known cause. Ist rise was 10 yr ago, only investigated last yr at my push. pre 1st chemo, mild up bili ( caused by my known Gilbert's which only affects billirubin and after fasting bloods) mild ALP, ALT. Ggt up more. Post 1st cycle in hospital on Iv abs as well all numbers shot up alp, Ggt high 200,s ALT 95. Due to neuts taking 6 days to get from 0 to 0.6, I had an extra week off chemo. As ALT was down fro 95 to 79 (0-35) my onc had to dec adriamycin dose by 15%. ALP Ggt mid 200s . It was ALT that concerned her. 3rd dose Friday, only ALP and Ggt up in mid 100s all others normal. I would think that if your enzymes were normal pre-chemo it would be way more likely chemo and not mets. But good they're doing u/s. Hope you'll just have dose adjustment and keep going. Thinking of you.
Blair, hope your back pain is improving
Rljes, the day chemo goes in it kills off some of the cancer and other cells, you then need to flush out the chemo, its waste product from breakdown and breakdown of the dead cancer cells. Also reduces constipation, nausea etc. If your on cyclophosphamide you also need to drink really well and frequently for 48 hours so the chemo doesn't stay in your bladder and cause problems , so drink before bed and get up to wee. Hope that helps explain it
I had cycle 3 AC Friday and worst chemo brain to date, maybe the accumulation!
Shane's wife, hope you are improving and also getting assistance. You have a lot to do at home it must be so hard, thinking of you and you're amazing hubby and little ones
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PS - I forgot to answer Rljes's question about hydration during chemo. I was wondering too and here's what I found as one answer. I don't think it helped me with my constipation, but maybe I don't drink enough.
Staying hydrated can help minimize the fatigue and constipation caused by chemo, and it also protects your kidneys from the toxic waste buildup caused from cancerdrugs. Unfortunately the process of chemotherapy can actually cause your body to lose more water and become dehydrated.
Thanks Bennigan! Back isbetter.
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Thanks everyone for the info on the liver enzymes. Mine were perfectly within normal range before starting the Taxol...so, I'm hoping and praying I will just need a dose adjustment. So glad this site exists so we can compare notes...it is so helpful and mind relieving.
I've had no physical side effects whatsoever with the 3rd round of Taxol I had on Thursday. I thought my achiness would start yesterday, but so far nothing at all. I'll take that!!
Have a great day...heading to the grocery today. Need to get some "good" foods in this house.
Hope
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Such a headache this morning... Not a migraine, just a regular bad headache. My legs feel tight and achy, too.
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A bit of info...I forgot I had this book "The Total Cancer Wellness Guide" - Reclaiming Your Life After Diagnosis. I must have received it when I was first diagnosed in 2010. There is a section for drug specific nutrition advice:
Carboplatin: Avoid purine rich foods (liver, sardines, anchovies). Eat plenty of magnesium, potassium, and zinc-rich foods (whole grains and nuts). Drink extra fluids.
Cytoxan: Drink extra fluids. Don't cut back on salt or sodium-containing foods. Avoid alcohol. Eat bland and low fat foods.
Taxol: Drink extra fluids.
Thought you gals might find this interesting. I think diet plays a huge part in the side effects from these drugs.
Hope
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Trumans new winter coat.
Bienniebin and Blair - thanks for answering the flushing of Chemo out of our bodies. Makes perfect sense!
Hope - re: Carboplaton - its a good thing I don't like liver, sardines and anchovies! What did it say about Taxotere? (Re: lawsuit Tazotere - do I want hair or $$$$?) Kidding.
Meoww- My first few days I felt heavy footed, kinda clumsy, and yes, Headaches - usually I get Migraines, but now i get headaches. I have had only 2 Migraines since I started Chemo and usually I have 4-5 a week. YEAH ME! - Oh and I took Trazadone last night (25mg) and slept for about 4 hours straight! Its a miracle! Thanks! (I borrowed it from Truman, he takes Traz for thunderstorms. ssshhhh - don't tell)
Since I cut my hair - I rub Vit E on scalp everytime I think about it. (Then keep a beanie on) Though I can't wait till my brother sees me with no hair. Ha.
Hi mkn86 - Its such a balancing act between the BIG D & BIG C. I guess by the last 6th round I'll have it down. I havn't had hardly any bone pain (anymore than prior to chemo) It just hurts when I take Truman for walks. I havn't been tired either. More Jazzed than anything, just weird.
I have been taking Essential Oils - the purest form of "Angelica" & Copaiba" My Cousin brought down about a dozen for me to sample - most made me sick. So, I told her we will revisit them after Chemo is done, and see how I react to the smells then. (Most 'smells' cause Migraines)
Blair - hope your dentist apt goes well.
Take care everybody, rj
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rljes - Tuman is so handsome! Is he older?
We have a border collie/blue heeler mix that my husband adopted when he was 2-ish. He is now about 17. Moves a LOT slower than he used to and his vision and hearing aren't what they used to be either. But he's otherwise healthy and still goes out on group walks that last about 2 hours 5 days a week when we are both working full time. We always had dogs when I was growing up, but Troy is truly the sweetest, smartest dog I've ever known and he keeps me company while I'm home these days.
More about mouth sore prevention: I brought ice chips to suck on during the Taxotere part of my infusion. Will be continuing to do this going forward, and even more diligent about it since hearing about what a difficult time you had with them. So glad you're doing better now!
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rljes - I get botox for migraines. I used to average more than a dozen days each month, even with preventative medications. After my third round of botox, I was down to 5 a month. It's like a miracle... but takes time to build up in your system. It's worth checking into. My regular headache from this morning did progress to migraine, but it is gone now. I am thankful for imitrex, and that it almost always works for me.
I remain cautiously optimistic about minimal side effects!
And I totally get borrowing the dog's drugs. My Gertie has xanax for fireworks and thunderstorms. She is very generous. Me with my pups: Izzy in my face, Gil is the Golden, and Gertie - a Newfie/goldie mix at the bottom of the heap. Dogs make it all possible.
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Meow - Oh My Goodness - I love big harry dogs! I take Imitrex injections as well. I asked my Dr about Botox and she said I wouldn't be for me - duh - should have asked why, because I certainly qualify.
Magari - Yes, Truman is about 11 or 12. I adopted him from the shelter last year, they said he was about 10 or 11. a Jack Russell mix. He gets pretty spunky when the deer come up out of the woods into our back pasture. Only bad thing about him is i can't let him off lead. We practice in back yard but once we get out in the woods he Gets on scent and is gone.
I sucked on ice chips and bagged my hands during Taxotere. I did everything right to prevent those HORRIBLE mouth sores. Just one of those things.
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Rescues are the best! And I love a hairy beast, too.
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Around 14 hours to take first chemo, I'm scare, fears kill me, I will try to forget and sleep 💔
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Meowmmy65 and all:
Just joined in with this group. I start TCH+ perjeta treatment in 3 days. Your experiences are helping me cope with my anxiety about what is ahead.
Emalyn
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I think our fear gets the worst of us! Not that this is a picnic.... but today doctors are able to help manage side effects much better than they were in the past. More women are not only surviving BC - they are living long lives. It's scary. It's not fun. But it is just a thing we have to do so we can get on with the business of life!
Welcome - sorry you are here. Sorry any of us are here! But we can do this!
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