Starting Chemotherapy March 2018
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In for TCHP #3 of 6 tomorrow. Bleh.
I'm worried about my RBC. They were low last time along with my hemoglobin and hematocrit, though not low enough to hold the chemo. I've noticed I can't get the same intensity when running these days. I just can't suck in enough air to get the speeds I used to have. Also my resting pulse is higher than it was when I started chemo. I'm working on my protein intake on the advice of someone from the triple positive thread. I'll get some eggs or something for lunch today.
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Thanks for the scalp advice everyone. I should have looked at this before going to Walmart! I was going to be smart today so I went for blood work and then decided I could do the grocery shopping thing this time. Lol. I made it but i am wiped out now! I have lost weight which I can’t afford to do. I guess I’m going to have to start drinking ensure or something but I know I’m not going to like them. Becky we are on the same schedule. I go tomorrow for my third round also and like you upset cause i know I’m going to be having a bad day on Mother’s Day
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Quilting - nope. Not in the slightest bit. I could use that side effect, to be honest. It's sure hard to eat healthy when all I crave is junk and I go and get it.. And the it's delicious as ever.
Ugh. I hate it!
Maybe with 3 and 4th chemo lol
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Quilting & Bec. I have #3 tomorrow and I have been losing weight as well. It is the Zerxio shots and Herceptin that I find so tough. Mother’s Day will be at home on the coach and FaceTime with the far away preschool grandkids. Best wishes and good vibes for all of us
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Steph74 - I too have had the left eye twitch. Had chemo yesterday and it has been twitching off and on since last night. I was like...what now?
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Becca— sorry it’s happening to you too, but I’m glad I’m not the only one! From what I’ve read online it can be a side effect of Taxol/Taxotere but I’ll definitely be asking my MO about it tomorrow at my appointment. Yesterday it was really bad..literally twitching every 10 to 15 minutes or so. Really irritating!
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No chemo 3 for me today. My platelets are only 46 and need to be 100. Rescheduled for a week from tomorrow. Sad to miss it, and sadder that it prolongs treatment. Has this happened to anyone else
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Jstarling - yup, I had one of my AC delayed due to low platelets. Speaking of delays, my entire treatment has been changed. Was supposed to do dose dense AC+T and end May 24 but now I'm going to July 19 with 12 weekly taxols. (& that's assuming no delays in the taxol lol). We have to just go with the flow.
Enjoy the extra week off. One thing about low platelets is that unless they get down below the 30s or 20s, you usually don't really feel it so my low platelets week was just kind of a nice break. Just no gardening or activities where you might fall & bruise or cut yourself....
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I've got the eye twitch too! It's very distracting. I'm finally hungry and tasting my food again, but the Big D continues to ravage my system so I'm trying to eat somewhat bland. I tried going off all meds yesterday and after 5 visits to the bathroom in about 4 hours I gave up and took another Lomotil. I skipped dinner last night too and just went with water and herbal tea to give my tummy a break. I really hope I fully recover for at least a couple of days before my next infusion on 5/17.
My skin looks awful with lots of acne and little red spots and I have a cold sore now too. I need a recommendation for coverup and/or foundation--what are you all using right now? My skin is very dry.
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Today was 3rd chemo.... Went without any issues...
But
My weigh in.
I've gained 5# since last chemo... (8#overall since starting)
Gotta really get some of this junk food out of the house. It's so hard with 6 people in the house! 4 kids.. 8,13,13, and 18! And a father in law who constantly drops off Hershey kisses and large bags of peanut mms. Omg I'm obsessed with chocolate!
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Bec-ky - could also be fluid retention. I've retained too, but once the steriods get into my system I magically drop about 5 lbs.
Sidalee - ugh, D is the worst. I've been lucky to manage mine with just a banana a day. My skin is dry too, but unlike you I had acne before chemo and now I have none! But the dandruff, oh the dandruff!
I decided to keep cold capping even though I gave up and shaved my head and got head covers and a wig. Good call on getting the head covers because it turns out I am way too lazy for a wig. Infusion #3 today and so far so good. Bad day should be Friday. I have to interview three engineering candidates on Thurs and Fri so I hope my body cooperates.
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hapa - You're still running? Good for you! I was instructed by my PS not to run for two months post-op and now I'm too sick for most of chemo to even get out of bed on many days (of the hospital for that matter). I might also shave my head, but either way I'm cold capping. How many rounds do you have? I have ended up febrile neutropenic (even on Neupogen) and very, very sick after each chemo, like clock work, on day 4. They now think I am having a strong immune reaction to the Cytoxan and I meet with my MO in Friday to discuss options (maybe Carboplatin, who knows). It is getting pretty risky for me. I just released from four days in the hospital again today.
As for the eye twitch, I am also having it randomly on my left eye. Super annoying!
I have also lost weight in getting so sick; I didn't have any to lose to begin with. My stomach is super gurgly, but after puking up water for two days after every chemo I'll take that. I was on blood thinners in the hospital so now overtime I sneeze my nose bleeds. Grrrr. This happened for a few days last time after I was released too.
We're all getting closer to the end ladies!
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ToughCookie - you appear to be aptly named. I have not had surgery and will be forced to take an anxiety-inducing amount of time off running then. I don't know what I'm going to do, I'll probably show up to my first followup appointment absolutely convinced that death is around the corner. I have six rounds of TCHP. I wish I had shaved my head before cold capping. I lost tons of hair combing it after showers. With a shaved head, I could have avoided that and avoided a lot of the rubbing and toweling that comes with shampooing long thick hair. I read somewhere that the scalp soreness you experience during your big shed is indicative of inflammation of the hair follicles, and the hair falls out of the inflamed follicles, presumably because they have gotten too big to hold onto the shaft sufficiently. So perhaps with shaving beforehand, minimized rubbing of the scalp, some nightly icing of the scalp, and maybe some NSAIDs (if you feel comfortable taxing your kidneys further while on chemo; I kind of don't though my kidney function related numbers were fine this round) to reduce inflammation, you can get a better result than I got. If I had this to do over, that's what I would have tried. If you're not working out vigorously you should be able to cut down on washing quite a bit as compared to me. I don't see your stats to show what kind of receptors your tumor had, but surely there is a second-choice chemo regimen for you. They generally pick the one with the best survival statistics, taking into account the frequency of life-threatening side effects. So there is probably something out there just as effective, if not moreso, that won't give you such a strong immune reaction, though you will be trading that for other risks and new side effects. I have had a laundry list of side effects from the TCHP but so far they've all been relatively mild and manageable. My RBC counts, hct, and hbg were all steady as compared to last round (I got my blood draws and 3rd infusion today) and the NP thought trying to up my iron and protein intakes was worth a shot to fix my anemia problems, but she also thought it would probably prove ineffective. She considers my counts to be relatively good. Best of luck on whatever regimen they find for you!
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So, basically had to have a friend drag me to chemo this past Monday. I think my mental state is playing into physical aspects along with the accumulation of 10 Taxol/Herceptin treatments, because I have felt like I have the flu. Going to try to double up on the protein and iron because my RBCs have taken a steady downhill slide. Since hemoglobin and hemocrit go hand in hand with the counts, they, too, have tanked. All have been below the normal thresh hold since treatment #8. I spoke with the nurse practitioner in charge at the infusion center and she replied that this happens to 100% of patients.
Since adding red meat and eggs to my diet, I would think that RBCs would increase, but no. The nurses said that you can increase RBC through diet, but there is nothing you can do diet wise to increase WBC. That is why they use Neulasta and Granix but not usually for Taxol treatment. Oddly enough, my WBC has done better with diet changes, including adding more seeds & nuts, hummus, citrus, and various vegetables, along with salmon.
My taste buds are suffering. I can taste salty, sweet and hot, but not elevated distinctive flavors. My weight has remained steady. I try to get in cardio (30 minutes), weights (20 minutes) and walking (20-40 minutes) each day, but chemo days are a struggle.
Great to hear from others on here and see we are not alone!
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hapa - Thank you! I learned to crochet post-op because I couldn't run. I also had to stop kickboxing, which I had done for 12 years. I found it hard, but now I'm crocheting up a storm, lol. I asked my PS at every appointment after I started feeling better if I could start to run yet. Finally, she said I could "gently jog." I think she said that since I asked so many times, haha. However, I had healing issues. I have a friend who was running three weeks after her mastectomy and reconstruction, so everyone is different. I have been washing my hair once a week. I was losing hamster sized clumps of hair from breathing, I swear. I am really hoping I don't have to start from scratch with a new regimen. As for the NSAIDs, since I keep ending up febrile neutropenic with a fever, I am weary of taking meds that would mask a fever. I have been icing my scalp at night sometimes. And thanks for pointing out my stats were missing.
Turns out I had them set to private for some reason. I'll see what my MO says tomorrow. Your response and info is much appreciated!!! How many rounds do you have left? 0 -
ToughCookie - three rounds left. Finished 3/6 yesterday. I'd like to say I'm halfway done but I'm not halfway done until I'm on the other side of my chemo SEs in my opinion. Best of luck with your cold capping. How many treatments do you have left? Just one? They may just stop your chemo completely. You could try to get into the PALLAS study for Ibrance treatment, though you may have to switch MOs, and you may get assigned to the placebo arm. I think I would explore that if I were in your situation. You could also see if your MO can get your insurance company to approve you for Ibrance outside the study. I took it for a month as part of a study when they thought I was Her2-, but then I got kicked out of the study for inadequate response even though my response was pretty good, so my doctor got my insurance company to approve it somehow. And then they found out I was Her2+ so I went on to TCHP.
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Becca, your energy is impressive! I had yesterday’s TCH postponed because of low platlets. I did go for short twenty minute walk today but spent most of the day on the couch knitting..
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hi ladies,
Had infusion 3/4 today...all went well, they got me on first stick. I was shocked to find out I gained 10 pounds between round 2 and 3...that's just 3 weeks NOT normal....I walked tonight when I got home and I plan to walk tomorrow morning as well. I plan to start hitting the gym for some cardio since my PS gave me the ok...just gotta find out how that will affect my cold capping. And I’m most definitely going back on my pre chemo diet.
Sending good vibes to all that had chemo this week....hope your side effects are minimal and gone
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Hi Ladies,
I started Taxol today. No reaction. I fell asleep in the chemo chair which was a little weird but, was loaded up with Ativan and Benadryl. Have felt great all day. Not sure what to expect over the next few days and it's weird that there are no pills to take really. Is anyone else doing DD Taxol bi-weekly? Seems like a lot are doing 12 weeks. I have 3 doses left over next 6 weeks. You can do anything 3 times, right??? I am finding the fatigue from AC was getting worse.
Bec-Ky - I am probably up 10 as well.. I am hoping with the reduced steroids with Taxol some of that will just go away... My oncologist told me we carry a lot of water on steroids too... However, I have seen what I have eaten and I am not convinced it's water lol!
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So, I have a bit of a tough decision to make. I saw my MO this morning. I have done 2 of 4 rounds of TC. I have ended up febrile neutropenic both times, even with Neupogen. They have NO idea why, besides the fact that my body is responding strongly. They lowered my dose for round 2, it did nothing. My MO is concerned and said that the risk of me getting febrile neutropenia a third time if I more forward is high, and that the risk of death is also real. So that's wonderful. He says he can count on one hand the number of his patients who has had febrile neutropenia twice, and none have been young (I am 33). So, I have three options:
1) They lower my dose AGAIN and I try round 3 and pray I don't end up getting very sick. The risk of me becoming febrile neutropenic again is high.
2) I stop and just continue on Zoladex and add Tamoxifen (I would do both regardless of chemo).
3) I stop chemo and do number two as well as a home medication (Zometa), which is as er the ABCSG 12 study, My MO is leaving towards this one, as am I, since the risk of chemo making me insanely sick (or worse) is a very real risk to me now.
I have been icing my hands yet still have some Neuropathy. Like all of us, I need my hands for my quality of life. I kickbox, renovate my house, live alone, work on a computer for work, do crafts, garden, etc. What a choice!
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ToughCookie - I would drop the chemo for sure, no way would I risk febrile neutropenia (and death) for what is essentially an unknown benefit. I'd take option #3. Just my opinion. Good luck!
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ToughCookie - wow, hard choice. FWIW, I've had febrile neutropenia twice & my second was after a reduced dose of AC. Now, I'm older than you but also otherwise totally healthy & fit & they also can't figure out why I lose white counts so fast. I'm losing them on taxol now too, which isn't supposed to be really as hard on the bone marrow but here we are.... I also don't respond well to neupogen or neulasta meds.
Did they identify a cause of your fevers, ie the source of infection or were yours fevers of unknown origin? Cause if so I'd consider whether that risk can be reduced through increased sanitation or essentially putting yourself in isolation. I posted in another thread a long list of things I was doing to prevent getting sick during my neutropenic times. I'll try to get the link & post it here.
I'd also consider how sick you were getting & factors such as how high were the fevers, how long, did they respond to anti pyretics quickly, are you close to a high tech hospital?
I'm not dismissing the danger of febrile neutropenia - not at all. In fact, I personally think that many patients are not fully aware HOW dangerous this is and that it can be fatal, even if you're in hospital on all the antibiobics and antifungals knowns to man. BUT at the same time, many people spike fevers of unknown origin, there are some theories that these fevers are not actually infections at all but just an immune system over reaction to the chemo and they recover just fine.
I think one other thing to consider is how strongly ER / PR you are? Ie will tamoxifen be a big benefit to you? As I'm almost a triple neg, I need the chemo as there isn't much else for me to prevent recurrence so I'm keeping on as long as I can. Have you looked at your recurrence risk scores (on the NHS Predict or other sites?)
Did your MO give you THEIR recommendation? (sorry, just re-read more carefully that they're leaning to option 3. SORRY but I'll leave my comments anyway...) I mean, I think it's kind of unfair to dump some of these decisions on patients. Being part of the decision making process is one thing, but being asked to make these decisions fully on our own is pretty tough. I'd be tempted to say "hey, you went to school for years studying this, you read the research, you know the stats. I know there's no one right answer and sometimes there's an art and intuition to medicine...so what is your recommendation" I want to know even if I might end up making a different decision.
This might also be a time too to ask for a second opinion from another MO
Fwiw, I would probably be tempted to risk dose #3 but I don't know that you should consider what randos on the internet think
best wishes to you
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ok, fwiw, the list of my neutropenia precautions is here: https://community.breastcancer.org/forum/69/topics...
(I still got hospitalized after round 4 of AC but I tried!)
In that post I also link to a study which has one little nugget of hope to hang on to:"retrospective data examining the impact of treatment-related leucopoenia and outcome suggest that patients who experience haematological toxicity may in fact have better clinical outcomes [10, 11, 24]. Conversely, those who do not experience adequate haematological toxicity may be receiving less than their optimal individual threshold dose of chemotherapy. If this model is applied to the context of treatment-related toxicity, it would suggest that patients experiencing toxicity were initially receiving a dose at or in excess of their individual threshold. "
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32340...
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Becca, I hear you about needing to be dragged in! It's so tough mentally to keep going back. Rely on friends when you can and just remember, it's all temporary.
ToughCookie, so sorry to hear about the issues! I would be leaning towards #3 I think.
I went in today to get Taxol #2/12, but this week my blood work showed that my liver is even more inflamed and irritated than last week... and I didn't get Taxol last week because of the liver being irritated. When I first went in, my onco said "if today's blood isn't good, we'll skip this week too and look at it again next week." But it was bad enough that he said "okay, never mind, looks like Taxol isn't agreeing with your liver."
So... I think I may be done with Taxol?
That means moving up my surgery to around 6 weeks from now (8 weeks from last chemo) and then we'll see after the surgery if I need to get radiation therapy, or some kind of "chemo pill" that I would take for six months (or both). Hadn't heard about the chemo pill option before, but I guess it's some kind of second resort when you can't get the Taxol.
I'm a bit worried about the change in plan (hope my liver is okay), but I'm really relieved about not having to get more Taxol. The side effects were weird and unpredictable, and I had bad neuropathy after the very first dose.
Maybe my hair will start to grow back soon! Hope to hear from everyone on how you're doing!!
love, paisley
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Thank you hapa and paisleypie!
Moth - thank you! I read your list of your precautions and I was doing all of those as well. I have even been using hydrogen peroxide to clean my cell phone and steering wheel, and iPad. And, get this, I didn't leave the house EITHER TIME after chemo even once before I ended up in the hospital with febrile neutropenia. AND my house is cleaned with bleach during chemo. I live alone and the only person I saw after chemo was my dad who came by to cook me dinner when I thought I was dying (and his sanitary precautions are of course strict too). I wash my hands so often I literally had an entire layer of skin peel off of my hands last week. I have no pets and I think I was sleeping more like 12-14 hours post-chemo, I legit just watched Netflix, crocheted and slept after each chemo for days. So where I caught anything is a total mystery. To make matters worse, I can't take antibiotics unless 100% necessary due to a bacterial infection I got from antibiotic use post-op, which if I recur can be quite dangerous in itself and also fatal (and antibiotics increase my risk of recurrence, especially this soon after the first issue). So, this time in hospital I had to turn the antibiotics down. Which the doctors understood but made them nervous too. They never identified the source of the fevers. The fevers lasted about 24 hours going up and down to just above and below 38C for that period. SO not a high fever but a fever none the less. I would't actually be surprised if, as you say, the fevers were just a reaction to the chemo as opposed to an infection I was actually puking up even water for two days each time, insane headaches, felt like I was hit by a truck. I can't believe the Gastrofil didn't help; it got my counts back up after within a few days but never prevented the original drop. The only other way I could reduce my risk is to legitimately live in a bubble, and I'm one step away from that now, lol. I am VERY highly ER & PR positive - 91-100% ER and 71-80% PR, so that's in my favour at least.
My dad and my aunt, who talked to the doctors too and saw me so sick, are guiding me to take option 3. My brother and his wife have also weighed in on option 3. The fact that my family is saying that too speaks volumes. What a choice...my head hurts. Just when I thought I was half way done chemo and one step forward in treatment I feel like I'm failing chemo. The issue is now that my counts are back up I feel great! So I think, heck, I can continue. But I need to remember it isn't how I feel but the repeated febrile neutropenia and fevers that are worry some.
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Toughcookie101, I'm happy u made it thru the SE from infusion. My question to my MO would be have u consulted with someone out side of these four walls or this building? Should I seek a second opinion? Also I see how super clean we try to be; our clothing ,shoes, animals, others carry baceria that we don't see.
Everyone hope you have a good weekend. Happy Mothers Day!
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Hello Eveyone,
Hope you all doing good to all who had chemo this week.
I had mine last week and the SE's are same but really rough i've been throwing up for 24hrs then when it subside it was stomach pain lasted almost a week and also the nausea to top it all my period also came with it feeling really miserable i had a red spot on my left eye like blood clot thats breaking up now don't what it is. I just got my appetite back what a week.
Have a good weekend to all and Happy Mother's Day to all Mother's here hope hugs and kisses to you guys..
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Does anyone get headaches from all of this? I think I get headaches the first day after nulasta... And they last a week. Ugh.
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urdrago - thank you! I live in Canada and getting a second opinion is impossible. I tried every single avenue when I was first diagnosed. You have to fire one specialist and start from scratch with a new one to get a second opinion. Then if you want to go with the first one, good luck. There isn’t a real way to get a second opinion in the Canadian medical system. And very true about the germs!
YangSainst - What anti nausea meds are you taking? They should be able to help that. Can your MO prescribe different meds
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Good luck, Tough Cookie, we all wish you the best. I had my third chemo delayed this week because of low platelets so I will spend the weekend resting and hoping for a good blood test on a Tuesday. The weather here is beautiful; I hope everyone gets to go outside and enjoy it
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