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Starting chemo January 2018

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Comments

  • Coach1216
    Coach1216 Member Posts: 16
    edited March 2018

    I am so happy to see people ringing that bell. It may only be a step along this journey, however it makes me so happy to hear it!

    Unfortunately due to low white blood count I have been delayed one week. I will then start neulesta next week and will have it for the remaining three sessions. Reading about the bone pain makes me a little apprehensive.

    take care

  • Eschindler
    Eschindler Member Posts: 29
    edited March 2018

    Amelia and Olesya-

    I have to take a bunch of steroids to suppress my immune system, because this is my second time doing chemo, and last time I had an allergic reaction to taxotere (drug related to taxol). I had to take 20 mg of dexamethasone (steroid) over the course of last night. Needless to say, I had some energy this morning. So, I had my treatment today, and I did have a reaction to the Taxol. I had to have 50mg of IV Benadryl during the treatment. It was like high energy to passed out asleep for me! Oh well! At least I was able to do treatment!

    As far as the acne, I have also stepped up my moisturizing, and it's helping. I had a hysterectomy in 2015, and I was on estrogen because I was originally triple negative, but this last recurrence showed some estrogen receptivity (5%), so I had to go off of it. I think the rapid tapering down is contributing to the severity of the hot flashes and irritability. I am sooooooooo crabby. Anyhow, it beats all of the alternatives! Trying to stay grateful through it all and take things hour by hour.

    I hope your treatments are going well! We're gonna get through this.

  • princessbuttercup
    princessbuttercup Member Posts: 161
    edited March 2018

    Good morning all, I read often, but don't post that much. However you are all a great source of inspiration and support.

    I had my last round of chemo this week. So happy to have that behind me now. I ended up with 1 and not much of a second infusion of Cytoxan+Taxotere, because the second Taxotere was stopped at the 7 min mark after a bad reaction. (Got the cytoxan done first, fortunately.) Then infusions 3/4 were Cytoxan+Adriamycin. I found Adriamycin to be easier to manage than Taxotere, which had caused me so many problems and two hospitalizations. Best of all for this week is that I am done with Dexamethasone!!

    Next up will be radiation, and I will hear about that at my follow-up next week. Should I look for a radiation thread or will we just carry on here?

    Cheers,
    Buttercup


  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited March 2018

    Hi Buttercup and all. You inspired me to post back over here. I was in the Triple + thread but it got a little thorny and political. Ugh.

    I had my first of 4 Taxol/ Perjeta/ Herceptin on Wednesday. I was given as pre-meds Dexamethasone and Benadryl, especially since it was my first- to ward off allergic reactions. I would have slept through it but there was a hubbub in the chair next to me that woke me up, oh well. Yesterday I felt fine and sortof manic (thanks Dex), and today am achy and always cold, thanks to the Neulasta. My WBC counts were low so we decided to go with the Neulasta to bump them up. I did a bunch of research from articles in the taxol thread and found that L-glutamine, L-creatinine, vitamin E, and a B12 version called methyl cobalamin are very helpful to stave off SEs of the taxol, especially the neuropathy. I asked my MO about them, and he was very positive, even said, "isn't that all in the literature that we give you?" but it wasn't, needs to be updated.

    So- being your own advocate in this work is hugely important, I am seeing the results for sure.


    Stay strong, but sometimes strong means knowing when you aren't.

  • Gigicommon
    Gigicommon Member Posts: 58
    edited March 2018

    Hi ladies! Have any of you experienced a decrease in your ejection fraction? I just had my second echocardiogram and my ejection fraction decreased from 60-65 to 55-60 in three months

    The new numbers are still within normal range but I am a little alarmed by this latest development, because I have an entire year of herceptin ahead of me.

    Let me know your experiences.

  • Olesya
    Olesya Member Posts: 109
    edited March 2018

    Gigicommon - I had my ECHO cardiogram yesterday. results will be sometimes next week. I am a bit anxious about results,too, as I still have 14 more infusions of Herceptin to go. I don't know if it's an imagination, but it I feel like a slight pressure in my heart area. don't want to think of anything bad.

    so far managing this round not too bad. a bit tired, a bit achy, a bit nauseous, but nothing too drastic. will see tomorrow.:))

    Happy Easter everyone;)

  • Gigicommon
    Gigicommon Member Posts: 58
    edited March 2018

    Oleysa - I'm wishing you positive echo results!

  • Deaelle
    Deaelle Member Posts: 43
    edited March 2018

    So great to see to see you ringing the bell Olesya!

    I will have radiation and endrocine therapy for 5 years too - though it may be an aromatase inhibitor instead of Tamoxifen - not sure, but I am post-menopausal, so that changes the landscape somewhat. This is all to be determined, including the number of radiation treatments. I don't meet with the radiation onco until May 7. Hard to wait for that info, but so it goes. I'm HER2- so no Herceptin for me.

    Thanks for the YouTube link. I often fall asleep listening to podcasts or whatever, so I'll add this to my list.

    I had my first cytoxen and epirubicin yesterday. I've been prescrived FOUR anti-nausea drugs, which kind of freaked me out that there are so many but so far they are working, though I feel stunned and sleepy. I would pick that over nausea and throwing up any day though!

    Did anyone get mouthsores or hand/foot syndrome with these or similar drugs? The nurse mentioned these as likely SE, both of which I did not get with Taxotere (docetaxal). I did use Biotene mouthwash which must have helped. However, I did get oral thrush with those cycles.

    For those with acne, have you tried adding a 5% Benzoyl peroxide gel morning and night to your skincare regimen? I'd put it on before my moisturizer. I just get a product off the shelf at the drug store - costs about $5 (Cdn). I did that at the beginning for a while, until the chemo drugs started making my face too dry, when I had to step up my moisturizer, but if it ever looks like an acne event I include it again for a few days. I've had this product around before CA for the occasional breakout though.

    As a few have mentioned, I am trying to stay grateful!! I hate going through all this, but glad it means I get to LIVE!

  • Char105
    Char105 Member Posts: 28
    edited April 2018

    I am so confused. My MO said he would not release me for radiation until my post chemo followup 6 weeks after chemo was done. I really wanted to start that right away to get it out of the way. It seems on the boards others are going to radiation not long after chemo is done. Makes me a little concern the time frame between everything. Surgery was in November, chemo started in January and now it looks like earliest would be May for radiation.


  • moth
    moth Member Posts: 3,293
    edited April 2018

    Char05 - It seems to me the radiologist is the best person to decide whether a person is ready for radiation treatment or not.

    I'd ask for an immediate referral and tell the MO to send a letter giving his recommendations for the delay but that you want to meet the RO (or perhaps get more than one opinion) right now.

    FWIW, where I am the guidelines say: "If the patient receives adjuvant chemotherapy, then RT should follow the chemotherapy and start approximately 3-4 weeks after the last intravenous chemotherapy. ... Adjuvant hormonal therapy may be commenced prior to or after RT."

  • Olesya
    Olesya Member Posts: 109
    edited April 2018

    Holly blurry vision!

    Neuropathy settled in too in my finger nails - they hurt. also my teeth and skin are very sensitive. C'mon, a few more days of misery and then i can start feeling better:))

    Our Easter in Hanover was sprinkled with snow:))

  • okkate75
    okkate75 Member Posts: 75
    edited April 2018

    My RO wanted to start 4-6 weeks after chemo, and I'm starting right at 6 weeks after. I had a follow up appointment at two weeks, then mapping, and another two weeks to get ready. No one seems concerned about this timeline, so I'm not either. I agree--check with your radiation oncologist. She's who decided on my timing. Sending good vibes! I agree--I just want this started and over with.

  • erob321
    erob321 Member Posts: 59
    edited April 2018

    dealle- thanks for the tip on the benzoyl peroxide, I’ll try that out.

    I just got news today that I don’t have to do radiation! I am so relieved! I have an appointment with my plastic surgeon at the end of April- hopefully I can finish up with the reconstructive surgery before the summer. I can’t wait until January, though. I should finish herceptin, then I can get this port out!

    Good luck to everyone as we continue this journey!!

  • insideout2
    insideout2 Member Posts: 108
    edited April 2018
    Hello Everyone,

    I haven't posted in a while, but I have been reading the posts.

    I smile when I read of positive progress. I feel bad when I read about discomfort or challenges. I place all of us in my prayers.

    It's funny how time equips us to adapt to our situations.Things that concerned me in rounds 1-3 don't for round 4. I realize this is a long process and accept help from others. I spent my first few rounds trying to do everything like the old me, but I'm not the same.

    I have grown and appreciate the fact I am here. I appreciate the time I have with family. They go through this journey too. I went through this as a young adult when my mom was diagnosed. It does impact family to watch loved ones and everyone responds differently. I found myself having one on one communication with those who did not feel comfortable around me. This helped a lot because it removed the awkwardness between us.

    I am present with family and try not to sweat the small stuff.

    I had worried about what I could and did miss with my husband and kids. I now appreciate what I am here for: helping them with bad days, seeing them reach milestones, watching the kids grow up, learning more about my marriage foundation (the good and not so good). I was able to see my son obtain his driver's license. I witnessed his younger sister assit him with getting paperwork for his school permit. She was motivated to assist so she doesn't catch the bus, but I was impressed she got it done. I watched my child to the during service without a reminder from me. I watched my husband just take over, by me just saying I needed him.

    I am grateful for grace granted to me that allows me to feel the bad and push through.

    I watch young children, peers, and seniors push through their diagnosis and it is encouraging.

    Being present is a blessing I thank God for.
  • Olesya
    Olesya Member Posts: 109
    edited April 2018

    my back spasms came on time(on 6th day post chemo), and left me tired and week. today I am taking it slow.will go to chiropractor and just enjoy the day.

    Wish you all the same:))

  • murfy
    murfy Member Posts: 259
    edited April 2018

    Insideout2, what a positive, hopeful message and attitude! I share your sentiments completely!

    I, too, haven't posted much since finishing chemo. Some SOB and stamina issues, but MO says 'give it time'. AND, my head is covered in fuzz and bristles!

    Love your beautiful pictures.

    Be well sweet sisters....

    Laura

  • Deaelle
    Deaelle Member Posts: 43
    edited April 2018

    Char105: I was told it is routine that radiation starts 4 to 6 weeks after the last chemo treatment, since the treatment is understood to include the 3 weeks afterwards anyway(or whatever your cycle length was). So, maybe you get it all set up and then your MO just signs off that s/he is okay with your going ahead with it.

    Erob321: Hope the benzoyl peroxide works for you. And congrats on not needing radiation! No radiation will make reconstruction so much easier I gather. Good luck with that upcoming phase! I don't meet my RO until just a few days before my last chemo treatment, so won't even know for sure until then what the plan is. I am still operating on the general info from the surgeon and MO that I will need it.

    Insideout2: Thanks so much for your thoughtful post. Growing and learning through this cancer is a hidden gift, even if not one any of us would choose to seek out.

    I am four days out from my 4th chemo session, but the first one with EC. The 3 antinausea drugs I was prescribed have kept that in check, thank goodness, but each has a sedative side effect, so one is layered on the next and the next. I am SOO wiped out! Today, I got up at 11 and then was largely napping from 130-430. My sweet husband got us out the door for a 3 km walk in the snowy sunshine after that, but I am about ready for bed here at around 8 pm. Geez. I am done with these drugs now, so waiting to see if the nausea will appear over the next few days or not. Fingers crossed that I will be in the clear!! But also wondering what other SE might be around the corner...

    Hope you all have an awesome day tomorrow.

  • insideout2
    insideout2 Member Posts: 108
    edited April 2018

    Lmurphy- thank you

    Deaelle-I hope the SE are tolerable. It appears every round is different.

    I had backed off walking 30 minutes a day and decided to start again yesterday. I live in Houston, Tx and the weather was nice.

    I hate to admit it, but walking does give me a little boost and helps me sleep.

    I napped from 5-7pm.

    I am ready to complete day four of this round. I appear to feel icky on the last day.

    Well wishes to all.


  • erob321
    erob321 Member Posts: 59
    edited April 2018

    I know a few posts before were about how to spot a recurrence, and my mo just told me today since I had a mastectomy any recurrence would be superficial, on the skin, so you would be able to feel and see a lump or any changes

    She did say that my chance for recurrence was low, but it’s nice to know what to look for.

  • Homemadesalsa
    Homemadesalsa Member Posts: 138
    edited April 2018

    Erob that's so good to hear. One of my (probably all of our) deep fears- that all of this suffering is for nothing.

    I came through AC really strong since I went into surgery and chemo really strong. Feeling my lump was the only symptom before biopsy came back cancerous. I am a mountain guide and athlete, so exercise is my meditation and my go-to. My MO says that's why I've done well. So I want to encourage you all- even if you feel like crap, get outside or to the gym, get your heart rate up a bit. It makes such a huge difference physically and emotionally. My 4-month-old puppy pushes that process for me! Here's a photo of us from yesterday in Teton Canyon, nordic skiing.

    image

    After first round of taxol/ perjeta/ herceptin (TPH) I felt the neulasta worse than ever. Felt like day 1 of the flu (maybe it was?) But I went in tired and low wbc counts from my Arizona trip (but I have no regrets). Then a friend brought over soup, but it was this wild rice/ cream-based soup, and it upset my beleaguered tummy pretty bad, set me back a few days. I put the offending soup down the disposal and am back on track, belly and all. 3 more TPH to go, then radiation. I did get news yesterday from my new primary doc (that's a whole nother story for another time) that the year of perjeta and herceptin starts AFTER the TPH, not including the 4 PH in the TPH. This process sure does go on for a long freakin time. Anyone else having issues with patience? I am ready to be done, ready for my hair to grow out (it itches like crazy now), ready to get back to work. Breathe, breathe...

    Thanks to all of you for your stories, your support, and just knowing that I am not the only one going through this. In fact, I am amazed at just how many people have cancer or have gone through it, or have a friend or relative with cancer. Yikes!

  • Amelia01
    Amelia01 Member Posts: 178
    edited April 2018

    Homemadesalsa --- you for sure inspire me to get off my duff and get in shape! There was a fantastic article posted on one of these boards that said, if nothing else.... exercise can help keep metastasis at bay. I was told my 10,000 steps a day weren't enough cardio :( My home treadmill is finally unclamed and I have a personal trainer come once a week and I try to motivate myself to do things on the other days too (steep incline on the treadmill and getting my heart rate up). Unfortunately I live in a highly polluted city so nothing done outside can be remotely healthy.

    http://www.cmaj.ca/content/189/7/E268

    I am beyond itching to get this over with! I'm already getting my radiation treatments scheduled (and hoping to do them in the US) and it was suggested to me to do hypo fractionated Tomotherapy which is supposedly better for avoiding damage to heart or lungs (in comparison to normal rads). I also inquired about proton but was told that the studies just aren't there yet and it may in the future prove to be the best way, but with all the lymph nodes removed, I can't figure out how they would zap where they had been...

    I have 2 weekly Taxol under my belt and 10 more to go (so more chemo than what I've already done but in a shorter period of time). My biggest gripe with all of it is the cold capping. It is really a two hour torture and I have lost so much hair I can't leave the house with a hat --- But when I see the little bit that is left hanging down, I figure it is worth it --- or at least, once it starts growing back it will be worth it. Sounds like you have a longer road with the PH -- do you continue with the T for a whole year?

    Thankfully I'm feeling fine after my two Taxol. No boost'em up drugs prescribed or anything at all.

    Daelle -- I'm hoping you haven't any side effects. I did EC and actually pulled through with few complaints (other than it rocked my blood counts into an abyss). Odd how fine I felt with only 20 neutrophils. I had about two days of mouth sores between most of the infusions starting around 15 days after. Food always tasted ok, so did water. Only at the very beginning for a few days did I have some fatigue. Then again it was winter, rainy and cold so very unmotivating to do anything but lie around.

    Thanks for sharing your thoughts, insideout, I'm also trying not to sweat the small stuff and to enjoy being in the moment. It is all about mindfulness, no?

    I tried to share with my husband that an afternoon sitting on a park bench is very different for me than for most other people. I don't think people who don't live it in first person can ever really understand. I am most thankful for my memories.


    xx to all!

  • murfy
    murfy Member Posts: 259
    edited April 2018

    Homemade, you are living the good life! So enjoy your pictures!

    Regarding recurrence, I am scheduled for a mammogram/US and a blood test for CA27-29, a BC marker. Then, I'm spending the next several months in Haines, Alaska putting this behind me.

    When I return to TX in November (about 6 mos later), I will receive repeat mammogram/US and blood test. This is the extent of 'checking for recurrence'.

  • murfy
    murfy Member Posts: 259
    edited April 2018

    Amelia, that article was a worthwhile read! To improve my chances, I need to eliminate the Half&Half I put in my morning coffee and get a few more minutes of exercise a day. Small price to pay...


  • paisley2916
    paisley2916 Member Posts: 55
    edited April 2018

    Homemadesalsa - I love your picture and you are motivating me to get some exercise!

    I just had my 3rd taxol yesterday. NOT FUN. Two days after the first round, I suffered severe pain all over my body for 3 days straight. They said they had switched manufacturers and some patients were having pain from whatever they mix the drug with. To address these SE, last week, they had me take steroids at home for 3 days after chemo, claritin every day, and tramadol (painkiller) starting Thursday night and then every six hours through Sunday. It got rid of the pain, but I was a zombie. Side effects listed for Tramadol are "tiredness and weakness, sleepiness, not able to sleep". Really?!?!? So, I spent the majority of my weekend lying around with my eyes closed and not sleeping. I talked to the nurse about this yesterday and she said to try taking 1/2 pill every 3 hours instead of a whole pill every 6 hours. I don't see how that will work, but I'll try it. If I have the same results, I'm asking for a different painkiller for next week.

    The combination of steroids and no GI side effects like nausea (other than constipation), have me eating and eating and gaining weight. I'm SO hungry from the steroids, but so tired from the tramadol, that I feel like all I'm doing is eating and laying around.

    Thank you for your post encouraging us to get up and get moving even if we are tired. I am going to make an effort to do this and to try to watch what I am eating. It's hard to get outside in Pittsburgh right now though - it was SNOWING this morning!!!! I think late next week, spring is supposed to finally arrive and I look forward to trying to get in a daily walk.

    Take care everyone!


  • Amelia01
    Amelia01 Member Posts: 178
    edited April 2018

    Paisley - are you unable to insist upon a different batch of Taxol? The side effects you are experiencing are horrid and so unnecessary. I feel so bad for you. The solvent for the taxanes is castor oil. I wonder if the reactions are from it.

    Big hugs to you

  • paisley2916
    paisley2916 Member Posts: 55
    edited April 2018

    Amelia - I agree whole-heartedly! They switched manufacturers I'm assuming to save money, and now the patients have to suffer and it costs the patient more money since I now have to pay for 3 additional medications to counteract their "bad batch" of Taxol. I worry, too, about whether or not it is doing damage to my body - my body is obviously rejecting it. I have constant pain with flashes of nerve-pain on top of the constant pain that moves around my body from minute to minute. It's almost like I'm short-circuiting!!! I see my doctor next Wednesday (i only see him every 3 weeks now since I started taxol) and I plan on asking him all of these questions.


  • Roxy13
    Roxy13 Member Posts: 116
    edited April 2018

    Hello, dear ladies,

    I haven't posted in a while. It's not because I've forgotten you now that I'm done my chemo, but to be honest, I've been feeling kind of blah, to say the least, since I've finished. I'm really bored, the weather has been terrible here, with no signs of spring, and I'm still feeling very very tired, even though it's been three weeks since my last TC. I can't get through the day without a nap, and I have such a hard time getting up from that nap, that I started to dread it. I don't sleep very well at night either, so I keep needing the nap, so voila, a vicious circle. I thought I'd be happy to be done, and didn't expect to feel so blue (and I am taking a mild anti-depressant, but not sure I want to up the strength…)

    I also heard that exercise prevents the risk of recurrence, so keep it up, ladies! I'd also be interested to see if you have made any lifestyle changes (if necessary, of course :)). I was the picture of health after my mastectomy. No alcohol, juicing, smoothies, greens every day, exercise (I still exercise daily). Things went downhill during chemo. I ate whatever I could tolerate and helped me get through chemo, I started having the odd glass of wine (my MO said it's ok, but I don't know...). I don't have much energy to cook healthy meals, other than dinner. I am by myself during the day, and don't feel like making salads for one, so many times I just have a sandwich for lunch. I tried to limit sugar, and when I get a craving, I reach for fruit. It's still got sugar, of course, but it's better.

    Thank you to those that shared their knowledge re checking for recurrence. I am meeting my MO on April 26th and will ask a few questions. I also heard, @Erob321, that after a mastectomy, any new lumps (knock on wood) will be at the surface. With reconstruction, they insert the new "boobs" under muscle tissue, so it lifts the whole area. I am worried about recurrence in the lungs, or liver, bones, brain, geez, there are so many other places it can creep back, so plan to ask about that.

    Hope everyone is doing well, and am sending lots of good vibes to all, and especially those continuing with the treatment.

    Lots of love


    R

  • rockcity
    rockcity Member Posts: 155
    edited April 2018

    Hi all,

    I'm a Feb chemo gal, but I always read this thread to learn from you ladies who are a bit further along. I have had 3 cycles of Taxotere, carboplatin and Herceptin. My MO would like me to add Perjeta to my remaining 3 treatments and for the rest of the year with Herceptin. Diarrhea is a very common side effect. For you ladies who are on Perjeta, do you have problems with diarrhea? Is it manageable? How long does it last? Is it continual? Anyone not have diarrhea? I have my 4th infusion Tuesday and need to decide. I hate adding another infusion, but I want to do what I can to go after this cancer.


  • Eschindler
    Eschindler Member Posts: 29
    edited April 2018

    Hi!

    Those of you suffering with Taxol, I hear you loud and clear! I have had allergic reactions to now four taxotere rounds (in 2015), and two Taxols. Today, I had my second Taxol, and I had to stop treatment because I had two separate allergic reactions. They had to give me 150ml of Benadryl, and 20 ml of IV dexamethasone, in addition to the 24mg I took as prep last night. My body was buzzing!

    And now, I'm miserable. I have terrible diarrhea, despite taking some Imodium, Norco, and some Valium (for the muscle spasms). I hardly got any of the Taxol, so I don't think it can be from that. I'm thinking it's from the Dex? I don't know.

    I've never had to stop treatment before, so I'm a little freaked out. Plus, when I was having the reactions, the Benadryl and Dex took a little longer to stop them than they have in the past.

    Anyhow, I'm going to talk with my doctor tomorrow to see what we can do.

    Also- as far as the fear of recurrence is concerned, having gone through both the experience of the fear, and of that fear coming true, my advice is to do your best to put it in a safe mental space using exercise and things that make you feel healthy (for example, I do occupational therapy, physical therapy, I run, I try to eat food that makes my body feel good, etc.). And, be vigilant and pushy with your doctors. If you have a weird physical thing that's bugging you, check it out. I found my recurrence because a random lymph node (in my chest, under my clavicle) lit up on a routine follow up PET/CT. Both my MO and the radiologist recommended just to follow up in the 3 months. But, I didn't feel great about that, and I had an ultrasound, which showed it looking much more suspicious. And, a biopsy confirmed the cancer. Because I caught it so early, it was 1 cm, surgically operable, and hadn't spread to any of the other 33 lymph nodes I had removed in the surgery. My prognosis is sooo much better because of that. So, that's my take on monitoring recurrence. Lastly, look for clinical trials that focus on monitoring for recurrence. They are developing tests that look for circulating tumor cells in the blood that show up much earlier than tumors would on a scan.

    I could use some good vibes. Today was a bad one. I hope you are keeping strong.

  • Coach1216
    Coach1216 Member Posts: 16
    edited April 2018

    Hi,

    Just had my first of three taxol treatments today. I was happy to get back on track after having to put my treatment on hold due to low white blood count.

    Definitely going to try to get in some exercise - just even to get out of the house. It really does seem to help me. I am also a big golfer so when the snow melts I want to be ready to hit the links. Not sure what my game will look like but having this goal helps keep my spirits up.

    Hoping for the best for each of you

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