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Starting Chemo in April, May, or June 2022

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  • margecandoit
    margecandoit Member Posts: 146
    edited June 2022
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    I am sorry you had a hard time getting your IV. They alway have trouble with me with blood draws but I had to get a port for my chemo. I am going in today for my 3 round in my first set of treatment but I did loss all my hair last week and that was really hard mentally for me.
    I have started coming out of my shock of being diagnose and looking at all the information about my tumor and what this spot on my lung could mean. I am also Grade 3 ER + PR - so I am with you on the being very concerned. I haven’t found much out about what that all means and it’s really confusing when I do fine info. I am also a sub type Basel type and there not much out there about that except that it like triple negative. I am still looking. Hope to get more clarity but going into my chemo fog today so maybe next week.
    I am interested in the Signatera screening for circulating tumor cells you are talking about would like to hear more about how that goes. I think your further along in treatment then me so hope to hear some good thing about that. Hope every has a good day.
  • moosegirl
    moosegirl Member Posts: 6
    edited June 2022
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    Hi everyone...new here but have been lurking since my diagnosis in March. ER/PR + Her 2 negative with two nodes involved. Lumpectomy April 4th and first Chemo on Monday! Oncotype test was 26 so definitely helped with making the decision to go with Chemo. Everyone has offered a wealth of information and inspiration. THANK YOU!

  • alleycat5
    alleycat5 Member Posts: 33
    edited June 2022
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    Hi all! I had Taxol/Herceptin #7 of my 12 weekly on Tuesday. Still doing pretty well. A little nausea here and there, but not taking the anti-nausea meds anymore after a couple of massive headaches and they told me headaches are a side effect of those drugs. I can power through and deal with the nausea, but the headaches put me down. My hair has thinned considerably, chunks of strands fall out when I wash or comb/brush, and i'm trying to keep from doing either of those very often. I would say I've lost about 40% of the volume in the back (I have long hair) though not as much on top. However, people keep telling me they can't tell it's thinner, so not shaving it off yet.

    The biggest issue I've had last week and this week is my husband has COVID. He's fine, mild symptoms. We had avoided the stupid thing for two and a half years. I actually moved out of the house the morning after he started feeling sick while he was still testing negative. Just a slight fever that morning. He didn't start testing positive until the next day. I've been staying away for over a week now. He's still testing positive. Decided I'm not going back home until he tests negative, which my MO supports wholeheartedly. The last thing I want to do is go back now and catch it and have my weekly chemo delayed. I was able to get my treatment on Tuesday because I'd had no symptoms and been testing negative. I'd been doing so well with everything, but this has really gotten to me mentally. I just want to go back home. I'm staying in a condo by myself and don't have my stuff for comfort. I really didn't need this on top of everything else.

    The only other thing of note was that my MO sent me to an emergency dermatology visit. I had these red spots, probably 10-15 of them, which were not a Taxol rash. A few of them looked almost scaly or like a sore. The dermatologist said most were broken blood vessels, just weakened by the Taxol. But three of them on one arm and shoulder looked different to her so she cut them off and sent out for biopsy. I've had a squamous cell carcinoma on my leg that had to be cut out with a chunk of my leg to get clean margins, and these did look similar to that. So I'm playing the wait on pathology game again. It's like the fun never stops.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    margecandoit, I’ll update here if I get any movement on Signatera. I noticed that it’s not covered for Medicare for BC yet (yes for Colorectal Cancer, no for other cancers), and private insurance tends to follow Medicare guidelines. I’m willing to self fund to some level, so I’m hopeful this is an option. They say they will work with a all private insurers, but not sure what that will mean.

    Welcome moosegirl! Which Chemo are you going to have? Do you have a start date?

    Alleycat, losing chunks of hair is so hard. Even with cold capping I lost a lot toward the end of cycle 1. So far it has stabilized. COVID for your husband sounds dreadful. I know that feeling of avoiding illness just so you can keep going without a treatment delay. When my blood counts plunged during my first cycle, the worry of delay or de escalation of my treatment was my top worry. Hope the dermatology visit is okay. I had a couple of spots I showed to my MO and she said they were sun damaged spots that chemo was actually treating, and that they might fall off. Maybe that will be true for you also. I’ve heard of that before. Kind of treating from inside out.

    I’m wiped out again these past two days. Have been sleeping a lot. Doctor said to just rest when my body says to rest. So that’s what I’m about to do. Take care all. Chemo isn’t for sissies. And every day I tell myself I can do this. I’m so ready to end this chapter, but am comforted to be accompanied by all of you. Hugs.

  • moosegirl
    moosegirl Member Posts: 6
    edited June 2022
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    Hey sarahmaude:) I'm doing AC 4 cycles then Taxol 4 cycles followed by radiation. Starting on Monday. Getting a bit nervous now! The Signatera sounds interesting. Have you just finished your first cycle? Sorry to hear your counts were low. I'll be taking a Figrastin injection for 7 days after chemo to help keep the wbc up. I do have my hair shaved in preparation...did not want to see that fall out! I'm sorry you lost some of yours especially after the effort that goes in to cold capping. I'm way to lazy to have attempted that lol!

    Looking forward to connecting here and there when I have the energy.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    Hi moosegirl, I just had my third of four TC treatments. I’m do get the PEG-filgrastim injections the day after each cycle. They’ve been very effective in bring up my counts after the low(Nadir) for my two chemo drugs. I have plenty of remaining hair, so I’m glad I chose to cold cap. Taxotere has a record of permanent alopecia that Taxol does not.

    You are very on top of your hair plan - shaving before treatment. Way to take charge! I’ve found that chemo is certainly more like a roller coaster than I expected. At least that means there are more energetic days in between cycles.

  • alleycat5
    alleycat5 Member Posts: 33
    edited June 2022
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    Hi Moosegirl! Curious if you shaved to skin or left a bit and went just really short? I found some bald spots tonight along what would be a middle part for my hair. Almost like a really wide part. But since I style to the side, it's still covered up and not noticeable. I went by and saw my hairdresser today just to chat and got some products to use that may help or at least help when it starts growing back to strengthen it.

    SarahMaude - You are absolutely right about the roller coaster. And those good days with energy are great for sure. I didn't really expect them, but they're welcomed!

    My MO is cutting back my pre-chemo steroid I take the night before from 20mg to 12. I hope that helps with some of the steroid swelling and puffiness I get every week. This week, under my eyes and just under my eyebrows have been puffy since Tuesday. Hoping the lower dosage may help.

    My husband's COVID test today was a much lighter positive line. It had been solid and dark up until today, so maybe this weekend he'll test negative and I can go home.

    Hope everyone has a great weekend!

  • moosegirl
    moosegirl Member Posts: 6
    edited June 2022
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    Hey Sarahmaude :)

    Thanks for your reply, I have never joined a forum discussion before so I apologize...I realise you had already posted the answers to my question! I had a severe concussion in 2019 which resulted in extreme fatigue that lasted over a year. Emails and texting even was arduous! So I know repeating yourself on social media can be taxing! So thanks again:)

    So glad you are able to save your hair. Are you having any bone pain with the filgrastin? I see some people are using Claritin to counter this? My handout says to use Tylenol. Do you have more chemo after the Taxotere? Roller coaster is probably a good word but it is good to hear there are some better days ahead. I'm trying to enjoy my last "normal" weekend lol.

    Good morning Alleycat,

    I can't imagine not being at home during treatment...You are probably a lot tougher than you think! Re Hair: Yes, I had my stylist shave it last week. I have a VERY short pixie cut any way so not too much of a stretch but I had let it grow out quite a bit as I suspected chemo was on the horizon. Also yes, wanted to take charge of what was happening to my body! There is an in home wig shop in our community ( the owner had her shop in our cancer clinic for many years) where I was able to find a gorgeous wig. My head never looked so good lol. And..it is so comfortable. The owner lost her hair due to alopcea as a young woman which makes her pretty qualified to help us baldies out!

    Moose hugs

  • alleycat5
    alleycat5 Member Posts: 33
    edited June 2022
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    Moosegirl - Good for you for taking charge! I have really long hair, so it's going to be a pretty big change for me. I have a great wig too, although I bought it before I even started chemo about 8 weeks ago (thinking my hair would have been long gone by now), and it's a bit tight. They said once my hair was gone they could stretch it a bit. I've showed pics of it to people. A couple of very close friends (who can get away with saying this) told me it may even look better than my real hair and I may want to keep it :)

    I'll be thinking about you on Monday for sure. You've got this! Sending big <<HUGS>> your way!

  • margecandoit
    margecandoit Member Posts: 146
    edited June 2022
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    Sarahmaude- I will appreciate the update when you have it. Really interesting that they only cover it for one cancer type.

    Moosegirl- I just had my 3 cycle of AC it makes me really fatigue I also take my nausea med as prescribe and I only get small amount of nausea. I also get the filgrastin shot after each cycle and take Claritin and haven’t had any bone pain. Your brave for already shaving your hair mine started coming out in clumps 3 weeks after my first cycle and that was hard to deal with. Now it gone and hat wearing time.

    Alleycat- I am so sorry to hear that your husband has Covid. That has to be tuff in a already ruff time. Hopefully he will test negative soon and you can go back home.

    Hope everyone has a good day.

  • moosegirl
    moosegirl Member Posts: 6
    edited June 2022
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    Hi Margecandoit:)

    Hopefully I can do as well as you with not too much nausea! I think I better pick up some Claritin:) My wig looks way better than my own hair. I will be wearing after all of this is done for sure😀 I am used to hats as I always wear one at work and a ball cap cute hat or sun hat the rest of the time.

    I'll keep you posted on my progress! Take care!

    Moose hugs!


  • maggiehopley
    maggiehopley Member Posts: 112
    edited June 2022
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    I had my 4th weekly taxol and 2nd herceptin/perjeta on Wednesday. My doctor did an exam and said that the tumors are responding to treatment; they are softening and shrinking. She seemed really pleased. I know some people's tumors respond initially and then stop, so I am optimistic, but cautiously so. I don't want to count my chickens, as it were.

    This week I felt awful on Friday and Sunday, but Saturday I felt normal. I don't know why but I was grateful for the "day off" from side effects. Food, and especially water, has begun tasting terrible. I really had to force myself to drink all my water yesterday. I think I will get some lemons or limes to put in it and see if that helps.

    My hair has begun shedding furiously. It won't be long now before I have to buzz it off. I'm hoping it will hang in there until this weekend. My daughter has her college orientation and I'd like to get through that first.

  • moosegirl
    moosegirl Member Posts: 6
    edited June 2022
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    Hi Maggie,

    Great news about the tumors shrinking. I'm starting chemo today and it's always good to hear there are "good days". Have fun with your daughter!

    Moose hugs

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    maggiehopely, I know exactly what you mean with good days and bad. I’ve pretty much felt like crap all weekend. Was actually running a low grade fever yesterday, and was trying hard not to worry. My nadir isn’t til Tuesday or Wednesday, so I didn’t think it was neutropenia yet. Fever is gone today. I’m trying to decide if I feel better or not.

    The taste of food and water has been one of my challenges also. First cycle I lost all taste for sweet. For that period, water tasted better than anything else. Second cycle I kept my sweet taste, but I think the “bitter” taste buds went. For that cycle, I hydrated with True Lemon packets; they are at all of our supermarkets. I like the raspberry and strawberry. When my tongue was really sensitive, the kids fruit punch worked. (I’m inserting a photo, don’t know why it insists on being huge, tech glitch/feature apparently).They tasted more like koolaid than lemonade (which is how they tasted pre chemo) but it allowed me to stay hydrated. This cycle, I am able to drink water or fake lemonades. Sometimes it tastes better ice cold, others, just fridge temp is best. I’m not used to being a picky eater or drinker. Glad to know I’m not the only one

    image


  • maggiehopley
    maggiehopley Member Posts: 112
    edited June 2022
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    I run a low grade fever every Sunday. The first week I was worried it was neutropenia, but it seems that it is just the way that my body clears each infusion. Of course now I worry that I will ignore a fever that is really a problem lol.

  • alleycat5
    alleycat5 Member Posts: 33
    edited June 2022
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    I'm so glad to hear someone else has ever changing tastebuds. Some days everything is pretty normal, and others most stuff tastes horrible. Sweet is definitely not as appealing, but salty and vinegary is good. Even the one staple in my diet, Diet Coke, doesn't taste as good.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    maggiehopely, I’m glad to hear I’m not the only one with the Sunday fever. Agree that it’s probably just our body clearing the effects of the drugs.

    Alleycat, yeah the taste thing has taken me for a ride. I preferred liking salty and vinegar for having better meals. We’ve been ordering a lot of carryout and the rest of the family has been getting my leftovers this time. I cannot figure out what is going to be palatable. So far, beef is gross (normally like it fine), spicy is amplified, chicken salad with grapes is good. I thought I could eat some Lucky Charms with my sweet taste back and some nice cold milk. Unfortunately it tasted chalky.

    I have been very neutropenic my past 2 cycles and MO did say to avoid salads and fresh berries the 5 days my counts are lowest other than that, nothing too crazy. She said most people with febrile neutropenia get their infection from something they are exposed to daily at home. After doing more reading, I feel reasonably confident that I’ll escape that with my GCSF shots and general health.


  • margecandoit
    margecandoit Member Posts: 146
    edited June 2022
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    Hi All!!! I am with you on the taste buds. I am a water drinker and it hasn’t been tasting good to me. Thanks for the tip to add to the water I will try that out. Hope you guys are have a good day. I tend to be a roller coaster head down hill and then slowly work my way back to feeling better. I am on my way back up today.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
    edited June 2022
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    Hi everyone,

    I’m wondering if anyone has experience with C. Diff infection during chemo. I just tested positive for it and my next Taxol infusion is postponed. I’m discouraged and looking for advice

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    kathrynw1thasea, I don't have an experience with C.Diff during chemo, but I do have indirect experience with C.Diff and direct experience with a suspected infection during chemo.

    Regarding C.Diff. My mom had it following a hospitalization. Basically, they put her on heavy duty antibiotics and gave it time. She didn't have to test negative for C. Diff. I know that hers was likely also due to bad immune system and exposure.

    My chemo infection experience was in round 1 of my TC treatment. I was severely neutropenic and having low blood pressure episodes along with thoracic pain. I thought it was my kidneys. The blood tests showed some signs of possible infection, so they put me on a high dose of Cipro. They also did blood and urine cultures with eventually came back negative. I was mostly scared that the infection would delay or reduce dosages in my next treatment cycle. I think you're on pretty frequent Taxol infusions, but my treatments are 3 weeks apart.

    By the time I reached the next treatment date, all my blood levels were restored. I'm not sure if you get a Neulasta type shot, but that is one reason I bounce back the way I do.

    The other recent conversation I had about being neutropenic with my MO is that the infections we might get during low blood count times are from things we already have. I'd guess that we're probably already exposed to a lot of bacteria including C. Diff. and non-chemo affected immune systems keep everything in balance. When our bodies are fighting these bacteria with weakened immunity, it's harder to overcome. Between antibiotics and time to let your body recover, the treatment delay is more of a benefit than a risk. You've been in treatment for a long time. You will get through this bump in the road.

    Here is a link to a good journal article on C. Diff. and chemo: C. Diff and Oncology Patients ASCO 2017

    I'm so sorry this has happened. Remembering this infection for my mom, it's not a pleasant experience. I hope you recover quickly. {{hugs}}

    Cyndi

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
    edited June 2022
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    Cyndi,

    Excellent article! Thank you for sharing it. I’m relieved to see that my MO has me on the recommended antibiotic. It was a real disappointment to hear that I have to skip Taxol this week, but I understand what you mean. Patience and caution are definitely the best advice. I have to remember to pause and breathe.

    Hope all is well with you!

    Catherin

  • lori615
    lori615 Member Posts: 3
    edited June 2022
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    just started my first treatment yesterday 6/22.. On the TC regimen. 4x 1 per 3wks. Then radiation. Diagnosed with er+,pr+ her2-. Had 3.2 cm tumor removed 4/18/22. Had 3 nodes removed. 2 of which was positive. Margins negative. Mammaprint came back high risk. Index -0.227

    Still so nervous about everything. So far I feel ok today. No real side effects. Will have my shot of Neulasta this afternoon. Would love to hear from others in my situation.

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    Hi Lori 615, glad to meet you, and sorry you had to join our club.

    So we are fairly similar. I'm also on the TC x 4 regimen. My tumor (details in signature) was removed via lumpectomy on 3/31. I had OncoType DX testing and had an alarming score of 49. Had my first TC treatment on 5/4 and am finished my third treatment last Wednesday. Every cycle for me has had some of the same milestones. I've been pretty wiped out on Sunday (day 4 post treatment, I'm on a Wednesday schedule). The nadir for Taxotere is around day 7 and Cytoxan is around day 9. Every cycle my white cells and neutrophils have been extremely low for my day 8 blood draw, but the Neulasta shot has brought them way back up by the following week.

    My facility recommended Zyrtec twice a day from one day before the Neulasta injection and for the following week. A lot of doctors say Claritin. My first cycle I had zero bone pain. Second cycle I had a moderate amount. This cycle, I've had zero. I don't know they difference. I've done the Zyrtec the same each time. One thing the nurse who administered the injection told me was that if I'm painful this time, I can try adding a benedryl tablet. Apparently, the bone pain is caused by a histamine inflammatory response in our bone marrow. That's why the Zyrtec and Claritin work. I know that you can add benedryl on top of the non-drowsy ones, so I was glad to know I had a backup.

    My other most annoying symptom has been mouth changes. On day 3 post treatment, I've woken up with a tongue that feels burned. The first time, I think I lost all of my "sweet" taste buds. I found that tangy or savory flavors were most appealing. All along fruits have been delicious. Peach, blueberry and orange flavors are great. Since then I have my sweet taste back, though I've had other strange taste sensation issues.

    They have done a great job premedicating me with anti-nausea and vomiting drugs on chemo day. The steroids and general chemo effects have resulted in a tend to constipation. I take colace (Dulcolax) twice a day and Miralax daily and have not had a major problem. I do know that's something you want to get ahead of. A lot of studies say that colace is ineffective in nursing home patient studies, so I tried several days without it, and I'm pretty sure I noticed more inconsistency in what was passing. I've added it back and actually do think it is helpful for me.

    Although some parts of chemo are cumulative (cycles 2 and 3 have led me to have severe fatigue on days 1-4), it is really more like a roller coaster. I've enjoyed feeling almost normal the week preceding the upcoming treatment. I've been unable to actually exercise much, but I have been able to work pretty much full time in between treatments (telework desk job).

    I'm cold capping and have retained about 60% of my hair. I started with a lot, so I still look pretty much like me. My big shedding so far spanned day 17-22 or so. Since then, it's really not much worse than normal brushing. Even though I've kept a lot, I will say that losing handfuls of hair was more than a little overwhelming. Whether or not you are keeping your hair, I'd say having a silk or satin pillowcase is helpful.

    I'm going back to the Radiation Oncologist (RO) on 7/8. I expect to start radiation treatments the week of 7/25.

    Please don't hesitate to ask our little group any questions. And also, a couple of us are in the Thursday Zoom in treatment support group. Here is the link to join that Thursday Zoom In Treatment Signup. There is also a Tuesday group: Tuesday Zoom In Treatment group

  • margecandoit
    margecandoit Member Posts: 146
    edited June 2022
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    Lori615 sorry you have found your self here. Sarahmaude always has helpful information. I also had a high mammaprint score -0.423 I haven’t seen another mammaprint score thanks for sharing. Hopefully you will have more good days then bad.

  • nynyroc
    nynyroc Member Posts: 5
    edited June 2022
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    hello!

    I just had my first TC treatment yesterday. Will have 3 more, every 3 weeks. Diagnosed 5/17. Stage 2b grade 2, mixed ductal/lobular features, lymph nodes affected. Chemo first, surgery, radiation and then hormone therapy. So far nothing too exciting, except the steroids are keeping me up and active! I'm tired, but can't sleep. Also waiting for symptoms to start. I had a little stomach cramping and tingling in my mouth and lips. I had Covid in May and still can't taste or smell anything. Thank you for your support. Not sure what I'd do without this community.

  • sun-shine
    sun-shine Member Posts: 30
    edited June 2022
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    Hi Nynyroc,

    Did you put some ice cubes in your mouth when you did the chemo infusion? I kept chewing ice cubes when I did my chemo treatments. It worked. I didn't have any mouth and lip issues.

    I also rinsed my tooth brush and other mouth cleaning tools with boiled water daily during chemo period for preventing mouth infection.

    Hope you don't have so many side effects. Take care!

    If someone is interested in cold caps and hair shedding, here is my story: I used Penguin Cold caps and managed to save about 30-35% hair in the end. My hair stoped shedding 1 month after chemo. New hair started to grow 2 months after the treatment. I am 4.5 months after the treatment. My new hair is about 1 inch long and it mixed with my saved long hair. Now my hair looks thick, not bad. I have some grey hair (old hair) and don't suppose to dye it within 6 months after the treatment (Penguin cold cap instruction). So I wear a hat to work. It works fine.

    I am glad that I chose to use cold caps.

    Another thing I'd like to mention here is skin sensitivity to sun. Our skin is very sensitive to sun when we do chemo. I got some unusual sunburn after attended an outdoor event for 3-4 hours even 2 months after the treatment. Please cover yourself with hat and long sleeve shirt etc. when go outside.

    Hope everyone is doing well and recovery well!

    Best wishes,

  • sarahmaude
    sarahmaude Member Posts: 338
    edited June 2022
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    Welcome to our chemo club nynyroc! I also enjoyed a steroid energy boost my first round I think some people keep getting that burst ; I didn’t. When I mentioned my fatigue, my MO said just to go with it. She said that if I had a longer regimen she could add stimulants, but since I’m almost done, we’d leave things alone.

    When I started on 5/4, the end seemed both near and far away. Now, with 11 days to my final infusion, I’m both excited it’s so close to finishing, and I’m already dreading those days of fatigue and low blood counts. I’ve been in the severely neutropenia range all three cycles, but have bounced back fever free each time as well

    I agree with sun-shine on the ice chips. I’ve done them during the Taxotere infusion the second and third cycles. That along with the Penguin cold capping, and hands and feet on ice is a lot of ice. I may try the ice chips during Cytoxan for round 4.

    I’ve pretty much just stayed out of the sun as I know our skin is so much more sensitive. That, and our heat indexes have been over 100 degrees lately. Ugh.

  • lori615
    lori615 Member Posts: 3
    edited June 2022
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    thank you everyone for your stories. This is all new to me and quite overwhelming. My 3rd and 4th day post treatment for my first time has been hard. Alot of bone pain. Almost feels like sharp knives poking you. Am taking Claritin once a day. My scalp hurts too, and I'm getting headaches. Also taking Tylenol and Advil off and on. Extremely tired. But I guess is just part of it. Tried to work, but ended up coming right back home. Thanks for y'alls stories. Helps alot!

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
    edited June 2022
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    lori615, hang in there! It gets less overwhelming. I think the first cycle is pretty daunting for everyone. I’m not on TC, but I’ve been through 4 AC treatments and 5 of 12 Taxol treatments. While the physical side effects will probably vary, the anxiety of not knowing what to expect is soon to be behind you. These ladies will have great advice for you.

    I’ll second Sarahmaude’s recommendation for the Thursday zoom group. We are usually a small enough group that we get quite a bit of discussion in and there is always useful advice. If nothing else, you really feel (well, I feel) comforted by the camaraderie. Everyone is very supportive of each other.

    Hope to see you there!

    Catherine.

  • margecandoit
    margecandoit Member Posts: 146
    edited June 2022
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    Hi all just checking in to see how everyone is doing. I have had a ruff couple weeks and finally today I am feeling better. Just in time to have my last infusion on my first set of treatment tomorrow. I guess this is how it goes. I did get good news the spots on my lungs are benign so that a big relieve. Now I have a couple months to think about surgery and which one I want to do. Any thoughts? Dr is thinking I should do a lumpectomy and a breast reduction. Not sure how I feel about that. I am slow to process stuff so it’s good I have some time. Hope everyone is doing well and making it though the best they can.