Anyone starting chemo August 2016?
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Ladies, Nadir has a new meaning for me. I had a birthday this past Monday and I have to say it has been the worst of my life. My 4th (last) AC infusion is scheduled for this coming Wed (9/28). I want to get it over with so I can get on to the Taxol (12 weekly infusions). But I have been so miserable since AC #3, I am really reticent.
My mouth sores have "soared" to new heights. First time they responded fairly quickly but this time, it's as though there are no treatments(including Pink Magic Mouth) -- none that work. Each day it gets worse. I have been unable to swallow anything without extreme pain. Sore throat, open canker sores on both sides of tongue. Two days ago a knot formed IN my tongue. Today it is some smaller but the "bottom" of the knot has popped through and now there is a big canker sore there. Left ear aches, too. Part of mouth sores--I don't know.
I have bunions on both my feet, and have dealt with blisters on my great toes due to that for several years. A few days after AC #3, I found a huge clear fluid filled huge blister forming on the inside edge of my left foot. No injury, just this growing thumb-size blister. It hurts. Pretty soon my heels were painful. My feet feel like I'm walking on sharp rocks.
I did some research and found the blisters are a side effect of chemo, too. The last two days my fingertips have started swelling and turned red and hurting (like they are burned). I think this is related to the blisters.
And my fatigue is so bad . . . You think it can't get worse, but it can.
Obviously walking and eating are "out." Typing has been non-existent, too.
I have a long list to "share with" my MO Wednesday.
I need to get through this--to either live or not--but feeling worse than death is a pretty heavy sentence.
I went to bed last night telling my DH that I hoped I didn't wake up. He has been very supportive but he has a long list of health problems and, waiting on me, is not helping him.
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Barbara, my 3rd AC was terrible too, but last was easier. Not sure why, but glad it happened and it's over. On to 4 DD taxol
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Barbara -- Sorry you had such a hard time... After my 3rd session I wound up in the hospital for a week, went to Emerg with a fever and found out my WBC was at zero. Then I found I had a Gram Positive Bacilli infection, so I was on antibiotics for the full week. Happily I am now home and waiting to do my last AC session this week. I just hope I don't wind up in the hospital again.
Dara -- So sorry to hear you are in pain. I hope it is over very soon.
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Hi all - it's been a while since I've been to the site, but you've all been on my mind. I have had my first 2 AC infusions, and am scheduled for the third on Tuesday. Already experiencing anxiety around this. This is the toughest thing that I've ever done (I know I'm preaching to the choir), so my heart goes out to all of the women and childrend who have been down this path before.
I've pretty much completely healed from the dbl mastectomy/reconstruction from July, so that's a positive. I got my head shaved and got fitted for 2 synthetic wigs, which was the last time I think I cried. They're doing the trick, but I have my eyes on a real-hair wig. I know they're more work, expensive but I figure if I can't have my own hair I want to love the temporary! Plus, they last much longer.
That's the updates from me. When the SE's are at their worst, I've been able to choke down dry cheerios and about 6 saltines. Craving plain oatmeal means I'm turning the corner to feeling better. I sent a note to my Oncologist to see if it's possible to increase the Zof or Comp when nausea it's at it's worst. I haven't had sleep issues, but I have experienced just not being able to get comfortable in one position for too long. I would love to sit downstairs and watch a movie, but I can't stay still. My Oncologist suggested to pop an Antivan next time. Any other suggestions?
For those keeping track of chemo start dates, mine was August 30, 2016.
Stay strong ladies. We are warriors and will get through this!
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Barbarau55, I'm so sorry that you've had such a terrible time. Given the severity of your side effects, might it be appropriate to call your oncologist's office first thing in the morning instead of waiting until Wednesday? If nothing else, the MO will have a head's up that there may need to be a modification to your treatment plan.
ElizabethAM, I hope your 3rd infusion goes smoothly. You're due for a smooth week or two after your recent problems.
Lifeisntover, I hope the Ativan helps with not being able to get the rest you need and that the doctor can reader the nausea issues.
Lyn
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I finished 4 AC treatments (the last three were reduced by 20% to make them bearable). I was given zolfran, compezine, adavan, and also taking Charlotte's web Cannibus oil which helps a bit with the nausea. Zolfran and compezine do nothing. I had my first Taxol two weeks ago and scheduled for another tomorrow. Was told Taxol did not cause nausea - WRONG. It did for me along with unbearable bone and muscle pain, so much so that I could barely get from the sofa to the bathroom without holding on for ten days. Was told to take 600 mg motrin every 8 hours. Didn't touch the pain. Spoke to Onco and for tomorrow's treatment he is going to reduce the taxol and the steroids by 20%. I'm diabetic but not on meds and the steroids caused my glucose to go over 200 when it is normally in the low hundreds. Dreading tomorrow and the coming week. Also told hubby I'm DONE. Ready to call it quits
IDC Stage 3c. Lumpectomy and 14 extracapular malignant lymph nodes. Started dd chemo July 17
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bararau55.. I hope you call your MO today and get some help. My friend had the same sores on her feet. When she told me how bad it was I was afraid I would have them too. So sorry it has hit you so hard.
Marlene...praying for tomorrow to go well
Lifeisntove.... What would we do with out our saltines? I think they help me more than the nausea meds. I forgot mine when I went for a little ride in the car with my DH yesterday and I was miserable. Hope the best for your #3 tomorrow.
Elizabeth...praying for a good AC session this week. It's about time for you.
Ladies I pray for you all that we can keep the strength to win this battle. It's not an easy one for sure & sometimes when I try to be my strongest tears just take over. I hope our ladies we haven't heard from are well ... Dara ...hope you are ok? I have finally stopped having fever & slept for about 6 hours ..yay me!
Love & prayers to all 😘
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Barbara, I had my 3rd TC last Monday and still have not bounced back. I think this was my worst round. The bone pain was debilitating, mouth sores came back also with a vengeance, dizziness was constant, and fatigue is unreal. Maybe the 3rd is the worst, I sure hope the 4th isn't worse! I find the only thing that helps the canker sores is to suck on ice chips. I bought some popsicles, but the flavoring irritates and burns my tongue. My MO had said the fatigue is cumulative, but the other SEs shouldn't be any worse than the first round. NOT! My bone pain is subsiding, but my legs are still so wobbly I can't stand for more than a couple of minutes. Do you have any pain meds? I found norco helped a little even with the mouth pain. My tongue had a deep slit up the middle that was a killer. Hope things ease up, and I agree, try and call your MO and let them know what's going on. I still have two more weeks before my next one.
Hope all others are doing ok. I just want to see the light at the end of the tunnel, and pray it's not another oncoming train! Hugs to all, Dara
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Hi All,
First post here. Started CT 8/10/16; had 3rd infusion last Wednesday 9/21-our 26th wedding anniversary
Am definitely struggling more this round, orifice sores, bone pain comes in jolts, intense heartburn, and fatigue. Have one more infusion to go on 10/12/16. I'm discouraged today. Unable to get out for walk. Am hopeful for tomorrow but just want for today to be over already.
Feeling left out by friends which I understand as who wants to invite and be around a sick person to go out for couples Sunday lunch? I know this too shall pass but not progressing past today's pity party. Whaaaaahh
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Thanks. I started right behind you all on 7/7. I too am starting with 4 rounds of AC dosage dense. I am also not really willing to risk the side effects and the minimal percentages associated with taxotere after surgery. It is still up in the air whether I will have a single or double mastectomy. My disease is multifocal and as such they must have missed it along the line because there is a lot of cancer in just one breast. I am getting a second opinion on the surgery portion. Thanks for all of your posts. It helps to know I am not alone.
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So a personal question that no one really has to answer... I have yet to get a bill from my cancer center, but today got a statement from my insurance company with August's statement. I was astounded to see the total for 1 (ONE) chemo day that was submitted as $30,000! Now it says my copay is 0 but Oh My Gosh! I sure hope my center accepts the insurance payment as payment in full! The only co-pay I've made so far was my co-pay for my initial diagnostic mammogram. Has anyone found that they are being billed for a high co-pay?
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Cali -- Did you go to emergency with that fever? The instructions I received say to go there immediately if the fever is over 38C (100.4F).
Dara -- If I remember correctly your next session is your last. I am so glad someone is almost finished with this torture.
Today the waterworks started. This is the first time. Not sure what caused it, but seem to be back in control again. I am exhausted and short of breath. Just folding the clothes from the dryer and I was all sweaty. The weather has turned and we are getting rain, so that rules out walking for a while. Enough grouching
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Dara, I have not gotten any bills as yet, but a friend of my husband's said his wife's total breast cancer journey was close to a million $$. That's recon, rads, chemo, etc. It's crazy! We are not supposed to have to pay anything either, with Medicare and our supplement, but yikes!
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Crazy isn't it? Yes, Elizabeth, I have one more chemo on Oct 10 then will have to do 30 radiation tx. then AI. I feel much as you do, just walking from one end of the house to the other and I'm winded this time. I wonder (and hope) that the 4th infusion is easier!
So here's another totally random question :-) My oldest grandson turns 10 on Sunday. He's into soccer, swim, bikes, etc. But does anyone know of a cool, fun gift for a 10 year old boy? I know several of you have daughters, but thought I'd just ask.
Cali, hope you've seen a doctor with that fever. I was also told the second my temp hit 100 I was to go to ER. I've been hot nonstop this round but haven't run a fever. Just need to crank the AC down a bit. I'm thinking it probably is the steroids.
OK, signing off to watch the debates. Night.
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DaraB, I posted in September chemo thread that my one night and surgery at the hospital was billed to insurance 75K (without surgeons' fees). My one Neulasta shot was billed 5.5k. So, I'm not surprised about that cost. As for the birthday gifts, I have a 9yr old son, who will *always* be happy to get a Lego set. I also got a new soccer ball to an 11 yr old friend's son - he plays soccer all the time, he was excited.
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Hi all, haven't lurked or posted since my last infusion. Have done fairly well, Just really tired and sorta melancholy. Wish I had energy to do more.
Annie B-I had a bit of burning on my 3rd infusion. They gave me some heat packs which seemed to help.
Smile-I'm also having all my infusions thru IV. It has been taking them a few pokes, because I have stubborn veins. I try and hydrate as much as possible.
Barb-sorry you are having such a rough time. Check with your MO if you can take lysine (it's over the counter) for the cancer sores. It totally helped cleared up mine on my first round within a couple of days.
Dara-Regarding charge.....the cancer center I'm going to, charged between 24,000-26,000 for the first two treatments. Insurance paid the "agreed amount" which was between 14-16 thousand dollars I think. Thankfully I'm at my out of pocket maximum for the year.
Susan Q-welcome
Have a good night all
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I am so sorry to hear so many of you having issues.
I am on day 9 post 2nd infusion and other than taste issues (everything tastes like dirt except Gatorade and Campbell's soup), I am fine. True to last treatment, days 6-8 were the worst, but no bade bone pain this time. I feel a little in my hips, but can still walk properly. Last time, it hurt to walk for more than a few yards, but that only for that 1 day after I forgot to take my Claritin. I am faithfully taking it this week. This cycle I have not needed to take my sleep meds after steroid days (melatonin and Benedryl) as I am sleeping fine on my own (upwards of 10+ hours a day including naps) or any OTC pain meds. My current bone pain is tolerable. The big "D" has been mild as well. Only 2 days so far with more than 1 bout, but always less than the 4 my doctors says to call in for bigger guns. I have lost several pounds as my appetite the last 4 days or so was shot though not worried as I could to lose, or about 60 or so. Last cycle my appetite came back with a vengeance week 3, so I am sure to gain a few back before the next round.
I did get saline infusions 2x the first week and kept up my nausea meds this time. Other than that, I guess I was more mentally prepared this time around? I knew to clear my weekend schedule and rest in bed. I finished binge watching the latest season of Person of Interest on Netflix and feel accomplished. I had a stockpile of Gatorade and creamy soups (chunky baked potato is a favorite) kept me going. My expectations were to rest and relax. Fortunately, my body cooperated.
If this is all there is to this, I can do this easily. Does it cramp my usual style - YES. I didn't paint this weekend because of concentration issues and fatigue. I am missing several of boys Scouting events (I was an active leader). There will be another event or painting time. This is a season of my life where I need to slow down and take care me. I also homeschool. Yesterday, the day was cut a little short with an extra break here and there - and that's okay. My kids understand and welcomed the break. We will extend the school year bit to get it done, but it will get done.
Hang in there ladies.
BTW - About the cost of Chemo. I saw on my insurance portal that they charged $69,000 for my first transfusion. Now that includes: Taxatere, Carboplatin, Herceptin, Prejeta, Nuelasta shot, and everything else. Insane. I don't have a break down of what was charged for what, but damn. My portion of that was $75 since I reached my OOP max already and my MO office got co-pay cards for the H/P/N charges ($25 each). Insurance paid $25K.
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Just wanted to say thank you to all of you for making me feel normal! I love this thread
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I did it again and let too much pass before getting on here...so need another day to address anything specific! I do know so many of you are struggling and I hate to read that this is happening to you all! I guess I keep making other excuses for some of my side effects! Dara- I have a cut down my tongue, but I've been told in the past I have a "geographic tongue"...so I just assumed when it was burning after my last infusion, just my weird tongue! I've been meaning to say I've gotten a few twitches in my eye, and I guess when I stop and tune in, I've got some neuropathy- tingling in hands and legs primarily.
I'm hoping today is bringing smoother sailing for some of you. I'm almost 2 weeks post chemo #2, so I'm doing ok. #3 next week.
I did get my genetic testing back. All was fine, but one "variant" with PALB2. They have to wait for more data (i'm guessing women tested) to make a determination on that one (can take months to years).
Dara- I had a statement for about $13,000 after chemo #1.
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Hi y'all
Welcome SusanaQ ...I started chemo on Aug. 9th so we are a day off... I hope today was a better day for you
Mojo56 ... I agree with second opinions when needed
Dara ... My itemized bill of Aug chemo charges are crazy ... My Neulista pod runs 20,975. Per treatment. I was shocked for sure ... Of course insurance writes a lot off. I have paid my copayment every time I enter the building. I so appreciate having insurance at a time like this. I love CUSD for sure.
Elizabeth .. I never understand my waterworks through this
My fever is gone. I learned from my first treatment that when fever hits on the weekend you only hear from the on call Dr. who tells you to take Tylenol and check your temp in 30 minutes.
I just wish I could sleep better ... Last night was another no sleep night.
Hugs
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Kelly, that's interesting... I also have geographical tongue! What a coincidence. I wonder if we are more susceptible to the mouth issues. My taste buds still haven't come back completely after my 3rd round. My tongue still feels like I burned it. Very weird.
Hope you slept last night Cali. I finally fell asleep around 1:30 AM last night. My problem is that I don't sleep at night so am tired during the day and take a nap. I think today I need to just stay awake.
Anyone ever hear from WenchLori? Wonder how she's been doing. She should be about done I think.
SusanaQ, welcome, you, Cali, and I are right in sequence. It sure will be great to get that next round done.
Hope all are recovering and able to enjoy their day!
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Hi everyone,
I am so sorry that so many of you are struggling. I have to believe that September is our worst month. My 3rd AC was my roughest, the side effects from my 4th haven't been as bad. I'm not looking forward to starting another 3 month round of infusions in December, but it is what it is and I have to believe that it will work to zap my triple negative floating free cells. Once I shaved my head (almost 4 weeks ago!), I finally stopped feeling like a rain cloud was following me wherever I went. Not that it's been rainbows since! But some rainbows, right?
I don't know about you guys, but I have not been a "Bald is Beautiful" type of gal. I wear my wig to work every day and bangs or a ponytail on the weekends or if I go out during the week (I even wear bangs to my infusions and yoga). I have some strange guilt from it - like I am hiding it or that I am ashamed of being sick. (It's like the mommy wars: you better breastfeed - but god forbid you do so in public!) I have occasionally done scarves in public and I do scarves if we have company to the house. Sometimes I see someone out in a scarf or a bald head and I wish I could let them know that I am "with them." How are you guys handling the "being bald" dilemma? Do any of you feel like you are betraying your "sisters" by hiding the bald head? For those of you that aren't "hiding" it, do you feel betrayed? I know I am overthinking some of this, but it does weigh on me. None of my students know what I am going through - have I done them a disservice, prevented some sort of learning experience, by concealing my illness? I still can't tell anyone without getting emotional and I try to avoid becoming emotional at work.
Anyway, I am doing great and so is Baby Girl. I am so relieved to have gotten my last infusion with her tucked in there and I am hesitant to even take a tylenol until she is here - which I think will be before Thanksgiving!
Lots of love and hugs to all of you. I am sending all the "Feel Better" vibes I can muster your way.
Annie
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Annie, so glad you are done with infusions for just a few months. Any break is a welcome break. As for bal is beautiful, I"m afraid I'm with you. I go bald around the house, but when I go out it's usually in a scarf. I think I need to start wearing a wig more to just get used to it. It feels uncomfortable and I can't wait to pull it off. I hope others don't feel I'm betraying them. I haven't seen anyone going bald so I feel more comfortable when out or with people to wear something. Yesterday I panicked because I was stretched out on the couch (bald) and the doorbell rang. I grabbed for my scarf which already had a tie in it and quickly tried to pull it on without even a mirror. If it were a neighbor, I couldn't answer the door nude! Anyway, by the time I got to the door, someone was walking down the driveway with a clipboard in hand. We live on a private street with no solicitations allowed, but once in a while it still happens.
I think the best thing is to be honest about who we are. I've never gone out without hair done, makeup on etc. That's been me since I was 2 years old. We lived in Connecticut and in the winter my mom would let me play on the front porch and she put me in overalls. She said I sat in a corner and cried until she brought me in and put me in a dress. I'm not a fanatic, but I still like to feel like me, so I still put on makeup, including painting on eyebrows blush, etc. If someone is natural and beautiful, more power to her! I guess at this point in my life, I'm more about accepting and thinking positive thoughts about people. We never know all the background behind their decisions and they are their decisions. Hope others feel the same.
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Dara, if you enjoy makeup and don't feel comfortable without a head covering, please don't feel that you must apologize for it. Just as I applaud those who choose not to have reconstruction or wear a prosthetic beast, it works both ways. I think it's rude and disrespectful to suggest a different choice is wrong. One person who is comfortable being flat made a comment about women with large breasts and udders. OUCH! My mother is naturally buxom as am I. Part of the reason I chose a lumpectomy is that my narrow hips really push my stomach out in front and I have lots of junk in my trunk. My large breasts allow tunic tops to drape over my lower torso so that I look balanced in profile. That doesn't make me a farm animal.
If ever there was a time to accept and celebrate our differences as women while we face down a common enemy, this is it. No makeup, a swipe of blush and a little lip gloss or dramatic Liz Taylor Cleopatra eyes & vibrant lips, go for it!
Lyn, Gingerly Stepping Off her Soapbox
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So sorry for the way you are feeling. I am feeling abandoned by friends as well. I also just moved from NJ to PA and seems my friends don't want to drive the extra 15 minutes over the bridge to see a sick person. Don't know anyone here in the new development as I am not up to socializing or going into the clubhouse. I had 4 rounds of AC. My first was so awful that my onco reduced the second, third and fourth rounds saying it would be inhumane not to. I found the fourth round to be the hardest. Was actually pretty good between my third and fourth round. I was told that after AC Taxol would be a breeze. Well, my first round of Taxol almost killed me with pain and nausea. Told my husband I was going to quit. Called the onco and told him if he didn't reduce it I would quit. He reduced my second which I had yesterday by 23% but said he couldn't guarantee efficacy. I said some would be better than none. He explained that I was getting a very high dose dense of all the chemos because of my prognosis (14 extracapular malignant lymph nodes). So had Taxol 2 a reduced level yesterday and seeing what tomorrow brings. Last time it hit me hard on Thursday afternoon and for 11 days I could barely make it from the bed to the bathroom without holding on. For anti nausea I take zofran, compezine, adavan, and have added canibus oil to the mix. Sometimes it helps, other times it doesn't. I'm just praying I can get through the next two Taxol treatments and start 8 weeks radiation. Hang in there. There is life after chemo.
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Can't wait to hear about your baby girl when she is born. How exciting. I'm not a bald is beautiful person either. I bought three wigs before I shaved my head but they are so uncomfortable and itchy especially in this heatwave we have had this summer, that I have only warn one twice, once to a concert and the next time to get my new Pa drivers license. I seem to be most comfortable in light cotton baseball caps which also block my face from the sun. I haven't bothered painting eyebrows which are gone now, but I do put on blush and lipstick and wear longer earrings now. I have always been an earring girl. have about 1000 pairs. I don't go out much anymore. Between the nausea and the weakness, and now a terrible problem with glare, I tend not to drive very much. Take care and keep us posted on baby's progress.
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Just received the EOB showing what was charged for my Nulasta pod. $30,700. Of course, medicare and my secondary insurance knocked it down. I had to pay $537 since my secondary pays only 10% of what medicare doesn't, Princeton gave its retirees a terrible policy. So $537 times 4 during each AC. I'm relieved that my onco is not giving me Nulasta during Taxol because he feels that will make the bone pain worse.
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Thank you. Keeping my fingers crossed that the reduced Taxol dosage will make the pain more tolerable. It should hit mid afternoon tomorrow. It was interesting though that after my first Taxol I was very painfully constipated for several days which caused bleeding hemorrhoids. Well, yesterday we got home from infusion at 5 pm and by 5:15 I was in the bathroom a dozen times until 6 am this morning with brown watery stools. Afraid to take ammonium for fear it will constipate me Making sure to drink a lot of water today. Thanks for thinking of me.
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My nephews who are of similar ages love money. We always give them a check for their savings accounts, and cash separately that they put in their piggy bank and then make a trip with their parents to a store where they want to buy something. I even do that with my 26 year old daughter. I gave up on gifts years ago when she never liked what I got her. And now she loves and needs money.
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Annie (or anyone else that is doing AC)--Do you mind if I ask how you felt after your 3rd AC? What made this one different from the others? I have my 3rd next week and am getting really nervous. I've heard it is horrible and hits like a ton of bricks. So far I have had no SE at all from the first two, except I was pretty fatigued for about 24 hours after round 2. I'd appreciate your feedback. Sending best wishes.
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