Starting Chemo May 2019
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Sleep all day if you can, HappyAnyway. I'm about ready for my first nap!
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First time posting. Just started Chemo treatment Monday and this is so different from 15 years ago! I actually felt ok the first two days...then downhill and I am looking for some hope here. Here's the bend in my story for now. I know we all have bends. My son is getting married in the Bahamas in a week. We all load onto a cruise with 1,000s of other folk a week from today, sail to the Bahamas, marry on the beach, return. This reoccurrence put a real wrench in things. Questions: when exactly is that most dangerous time for risk of infection? With Taxotere and Cytoxan when will the hair fall out? I want to look good for my son's and new daughter's day and am thinking that is right when it will fall out. What is your experience with thrush?
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Hello, Micahray. First of all, I am sorry about the recurrence. I am on adriamycin and cytoxan, dose dense, every two weeks. My hair started shedding heavily fourteen days after my first treatment. I did not have any bald spots, though. Hopefully someone that is taking the same treatment as you may have some insight.
I had thrush around the third or fourth day after each infusion. Diflucan quickly took care of it for me.
Congratulations on your son's wedding! What an exciting time. A cruise and wedding on the beach sounds wonderful.
Edited to add, the nurse told me that days 7-10 are when blood counts are at their lowest.
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Just checking in. I hope everyone is doing/coping well. I had my first chemo last Wednesday. I felt pretty ok on Thursday & more tired on Friday. Saturday was my worst day with fatigue and upset stomach. Today I feel a little better but my mouth is dryer. I'm not in a positive place emotionally because of my Stage 4 diagnosis. I'm hoping to spend some time with hubby later which I hope will help. But he's been busy dealing with our kids today so I hope he won't be too tired.
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melza, there's no wonder you're feeling that way. Please don't hesitate to see a therapist if you think it might help. Also of course there is the whole segment of this site that's devoted to stage 4. I wish I could hug you. Please accept my best wishes.
micahray, that's quite a trip planned! I hope all goes well and the bride and groom have a wonderful party. As to hair loss on TC, I understand it to be 14-17 days in. You'll want to have a plan before then, a lovely wig or hat already to use so it is least upsetting for you. Remember that when they look at photos years from now, they will see the love you have and the effort you made to make their day special.
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Micahray - welcome to the group - sorry you have to be here. I'm on Taxotere & Carboplaten (plus targeted HP) - my hair started coming out around day 17-18 lightly - then full force around day 20. White count is lowest during week 2. I haven't had any thrush - just dry mouth and taste buds a little off. Hopefully everything stays at bay until after your trip - which sounds wonderful. Likely a good distraction too!
Melza - thinking of you and hoping you get that time with your husband and can get yourself to a little better place mentally. Sending good thoughts your way.
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Micahray- I am taking taxotere and Cytoxin as well. I had my head shaved last week but still have "stubble" of hair. My 1st treatment was May 8th. I was told that all hair would be gone by my next chemo on May 29th. Hope you have a safe trip and are able to enjoy your son's wedding. So sorry that you are going through this again. Prayers going out to you.
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Pretty quiet here today. I hope everyone is doing well.
I'm moving through day 4 after my first AC with minimal SE. Most noticeable is the tinnitus. I always have some low-level, but it's pretty ignorable. Not so much now. Also SOUND. Just general sound amplification. Things are loud. If that's as bad as it will be, I don't get to complain.
Working on a quilt now. I had a big nap this morning already so need to move through the afternoon.
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Hi All,
A long overdue update from my side...
I am 8 days post my 2nd EC; I did water fast this time, 36 hours before and 24 hours after chemo.
The SEs, comparing to the 1st round:
- Marked improvement in energy levels. With an exception of day 3, which seems to be my worst day anyway, when I am hit by proverbial truck of fatigue, I have been feeling really good.
- Not so good on GI side though. Nausea on the 1st day was really bad, thankfully, Zofran took a good care of it
A touch of diarrhea too (TMI, I know), but luckily it subsided quickly.- Headache, which was a bother first round, was certainly much less pronounced this time.
I think I will continue with fasting, but, perhaps will alter the schedule a bit. I am rereading santabarbarian's posts on fasting and fasting mimicking diet.
Blood test today was ok: WBC at 3.0, the doc is quite confident that it improves enough by Monday so that I can get duly poisoned by my 3rd EC infusion, as planned.
I am catching up with the updates on the forum ...
Melza I am so, so sorry to read about your diagnosis! I hope that the treatment will kick these darn mets to oblivion in no time! Sending you gentle hugs from across the ocean.
To all brave ladies out there, wishing you a good week and minimal SEs
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LaC, I'm glad this time went better for you! As to diarrhea being TMI, I don't think there's a reason to hide this info from each other. If you described (ICK!!) THAT would be TMI! But mentioning? Nah. It's all okay.
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Hello
I just had a lot of family head back to their homes. They came out for the holiday weekend. The timing, chemo wise, was perfect. I was in the good days post 1st treatment so I was mostly ok. overall I'm more tired, and my stomach can't handle much, my hair is still on my head (my niece and nephew are very young, I don't know if that would have scared them to see my with no hair). Now that they're gone, I'm focused on round 2 coming up tomorrow. Got the foods I know I can tolerate (egg noodles with butter, popsicles, cottage cheese) scrubbed the toilets bc nausea and vomiting hit me really hard last time. doing the laundry and basic stuff. My hair is shedding terribly today, as soon as I'm up to it I'll head to the hairstylist. I have really thick hair so at this point it still looks normal. I suspect in a week that will be a very different story. Having scalp pain, read that was from the hair follicles inflaming and getting ready to fall out.
Melza.. My prayers continue to go out to you. Hope you and the hubby get some time together and you can talk about what's going on.
I missed a lot.. gonna go back and read a bit more so I don't miss anything
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Alicesneed and HappyAnyway - Pickwick is our home lake! Just down river from you a bit 😊 We got to spend the weekend at the lake. I had to do some much neglected cabin cleaning, but at least it is done inside. The screened in porch is going to have to be hubby's job. I find I am NOT tolerating heat well. And it was HOT this weekend. Yesterday we finished cabin and boat projects in time to take the boat out. We found a secluded cove – hard to do that on Memorial Day weekend and had the place to ourselves for the afternoon, evening and overnight anchorage – except for our friends who stopped by for a visit and a swim. I was afraid I would roast overnight, but it was very pleasant with the hatches open. And somehow coffee is just better on the boat. That was all good for my soul, but I'm pretty wiped out tonight. But it was worth it!
HappyAnyway, MountainMia, and Upstate NYer - I share your thoughts on support groups. Not sure they are for me. Hubby and I went to two many years ago for grief counseling after we lost a child, and I left both meetings in an absolute panic that I would be like THOSE people – they died when their children died. I know not all support groups are like that, but that's my nightmare memory. I CHOOSE to be happy again! Not miserable.
Kimmh012 – I can't believe all your issues with doc and insurance! I hate that for you! Good luck with it all. Sending positive vibes.
I am so thankful to find other people here are doing their own research and asking questions and insisting on answers. Sometimes I feel like I'm being a pain to everyone. But docs are not infallible. In many cases, I feel like I've been the one pushing for answers and resolutions.
Micahray – I had my first TC 4/24, and my hair started falling out (think carpet the bathroom sink) exactly two weeks later – just in time for my daughter's graduation weekend. So I got my head buzzed and wore my wig for the weekend's festivities. I didn't want to fly and have any kind of hair crisis, so I decided it was time for it to go! My second treatment was May 16, and I still have quite a bit of stubble left, but I think I would have bald spots if I had longer hair. I don't seem to be losing eyebrows yet. Hope that helps you with timing.
I had a really tender mouth and sore throat starting not quite a week after the first treatment and lasting for several days. I don't think it was thrush though? Got antibiotics. Also had a vaginal yeast infection the first time around. When I went to NP a week after the treatment, my white count was very low, so she gave me two neupogen injections, since I was getting ready to travel for graduation. Second treatment I got Neulasta the day after treatment. A week after second treatment, I ran fever (100.6), so I got antibiotics again. But with the Neulasta my white count was in the normal range!
Does your doc know you're traveling? Can they check your white count and boost if needed? The wedding trip sounds wonderful! Congratulations!
Hugs Melza – hope you had a lovely weekend.
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Kim.. I am so sorry to hear about the run around between insurance and the office. I hope the new treatment center ends up being a perfect fit.
For the Neulasta, I did have to go back to the clinic for the first injection (they said to be sure I wasn't allergic to it or anything), I'll get the onPro version tomorrow.
MountainMia.. I am so relieved to hear you got a treatment and are feeling ok.
HappyAnyway.. 3 down! Amazing... that must feel so good. wonderful news that the tumor is shrinking. hooray! No in person support group for me. I like it here, but other than that I have a few friends that have gone thru BC and that's enough for me. If i have a couple of hours to kill I'd rather be with my family or walking the dogs, or going to the movies. I've seen 3 since my first infusion. It gets me out and the activity level feels appropriate (sitting down and a short walk to the care)
Alice,, I try to eat healthy when I'm not nauseous. Other than that I eat what I think I can keep down. For some reason that's potato chips.. LOL i never used to like chips. This feels like one really long awful pregnancy.
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April-- Good luck with your round 2 tomorrow. My round 2 is on Wednesday. I had my head buzzed a week ago, but still have not lost the stubble on my head. Go figure. Hope your nausea is not too bad this time around. That is the worst. My worst side effect was a 2 day migraine. I am hoping to get a prescription for something stronger than Advil this time.
Lacomb- glad to hear you did better with the fasting this time around. Wish I could try it. Sorry you had nausea and diarrhea. I agree with Mountainmia that mentioning it is not TMI. We are all open and comfortable sharing all se's with each other here. We support you.
Everyone-- Hope you had a nice, restful long weekend.
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I am happy to have found this site. It is very helpful to me as a husband/caregiver for my wife. We've been together for 40yrs...started young
. Her first chemo was 5/16. WBC went to zero....scary. We did have nuelasta. Hoping it is back up for 2nd round this Thursday (A/C). 4 sessions every other week. Then 12 T sessions every week. Radiation/surgery to come?? We assume they will change up the AC formula due to WBC count. My wife had the thrush on day 2, slight headache and constipation. But all the side effects went away and she is her normal super happy self. I on the other hand am worried about the wbc issue as I want to continue to get rid of this mess . I hope you don't mind me listening in and learning from you all. Anxious for tomorrow's blood test. You all are an inspiration to me. Thank you.0 -
Hi jrominger, welcome! I'm sorry to hear about your wife, and I appreciate that cancer is more than the patient's issue. Thanks for working with her to get through this.
I'd be anxious about the blood test, too, but they won't proceed if her numbers aren't high enough.
And yay that her SE are pretty minimal. I'm rather stunned that mine are so mild, as well. I keep wondering if somehow I did something wrong!
Let us know what you find out tomorrow. Blessings for you both.
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Welcome Jrominger. I, too, will be married 40 years come August. You sound like a wonderful concerned hubby. Great to have a strong support system. Hopefully, wife's wbc will be close to normal by next treatment. My 2nd of 4 will be tomorrow. Hopefully with minimal se's this time. Feel free to post here anytime with concerns, questions, or anything. We are a very tight knit group. Take care.
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April- how are you feeling after round 2? Thinking of you today.
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Welcome Jrominger! I'm sure your wife is so thankful to have a supportive husband. So glad to hear she is back to her super happy self! Sending hugs and prayers your way.
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Thank you so much. Hoping the ANC is up tomorrow so we can go do round two of chemo. I have always been a raging feminist but even more so now. You ladies make us men look like sissies!! So proud of my wife and all of you. Let’s do this!!!
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Round 2 is not too terrible. We talked about the nausea, got some dexamethosone to add to that nausea routine if I need it, So far just staying on track with the zofran and compazine seems to help. One of my nurse friends from work came with me and I found that really helpful bc she seemed more supportive than my husband (he's wonderful but his father died from cancer and that infusion center seems to be hard on him).
Jrominger welcome! So wonderful to have you here and your wife is lucky to have you digging around for more information to support her as best you can. my WBC count was good, 9.3, hopefully your wife's count are up for round 2. Her and I have the same chemo plan.
Good luck today UpstateNYer! after this we're halfway thru the AC. yay!
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hi all. Taking rest of chemo as I write. It is going well. The benadryl is making me tired.
Happyanyway- found this resource for financial help you may find useful, or anyone younger than 45 years old:
Email: info@pinkdaisyproject.com
www.pinkdaisyproject.com/need-help.html
The pink daisy project provides short term assistance for women under age 45 who are within 3 months of breast cancer treatment or reconstruction due to breast cancer. To help patients offset their budget, the assistance is provided in the form of gift cards for groceries, restaurants, and gas.
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jrominger, hello to you and your wife! Neupogen is amazing at bringing WBC up.
UpstateNYer, big thanks for the information! I will check it out. I hope you and everyone else that had (or will have) treatments this week have minimal SE. No headache this time, alright?
It's taking me longer to bounce back this time. Still tired and GI symptoms are lingering. I have been drinking lots of water. I've been eating veggies, but need to incorporate fruit and back off the bread. MountainMia, I've been much better with protein, thanks again. I'm glad that you are well.
I'm enjoying my girls. This is their first full week of summer vacation. Yay! So glad to have them here.
Hang in there everyone.
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Thank you. We are just sitting here waiting for the call from CTCA to see how the ANC came out. If it is good we will travel to Goodyear, AZ tomorrow for 2nd AC chemo treatment. Nat lost a lot of hair in the last 24 hrs. Makes her sad but she is amazingly tough. I may buzz her hair this weekend. We have started to get in some cool bandanas and hats. Our daughter an RN (labor and delivery) will help out on that one. If we do go to CTCA, they have a salon that will buzz her hair for her. We did have the neulasta device put in her tricep this first chemo and it appeared to work fine. Still the ANC went to zero as of last Thursday, so hopefully back up today. I take it Neupogen is similar if not the same as Neulasta?
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Thank you. Sounds like we are on the same path!! We'll know more in the next few hours about ANC. Best wishes for you and I will be praying for everyone on this page.
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I get the Neulasta Onpro each time, yet my WBC tanks. 1.3 the first time, 0.6 last time. I have labs on Friday. If my WBC is normal, I will be pleasantly surprised. Neupogen is different. In three days, it brings my count up significantly. Let me know if you have any questions.
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jrominger... I live in Anthem, AZ and am also a labor and delivery nurse! Small world
I work at Arrowhead. Best of luck at CTCA, I hear mixed things. Some love it, some don't. Hope it feels like a good fit for you guys.
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Happy Anyway... I have 2 daughters that are home as well on summer vacaton, one just graduated HS the other will be a junior in college. It's such a treat. My husband is gone for work till friday so they are being super attentive. enjoy them!
Is anyone working thru these treatments? I'm off till the 16th but really feeling I want to stay home till the AC is completed. Pretty sure I can work thru the Taxol.
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April0315, you have my respect for working during treatment. I have been told by many infusion nurses and NP that Taxol is easier. I certainly hope so. AC hasn't been terrible, but I will be happy when it's over!
My girls are 8, 15 and 18. I'm afraid that the younger two are going to get bored early this summer. Again, hoping Taxol is gentler. Between fatigue for several days, then low WBC, I haven't been out very much. We always have fun playing games, though. We're ruthless. 😎
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Happy, good to hear from you. I'm glad it's going "okay" if not fabulous. And yay for spending time with your girls.
This is all so tiring, isn't it? Like, even if we feel 100% otherwise, it's just TIRING. Speaking of which, today I had a 2.5 hour nap. Jim had to come in and wake me up. I'm a napper but that's a lot. Today is day 6 and other than that, I feel pretty well. Even my tinnitus seems to have settled back to more normal.
jrominger, the hair is pretty hard to face. Since my start on chemo was delayed a couple of weeks, so has my hair loss. It's still just past my shoulders. My husband has asked -- a few times -- if I might be one of the few who don't lose their hair, and wouldn't it be too bad if I cut or buzz it, and then it didn't actually come out? Well, yeah, that would be too bad, but really not realistic.
So this weekend when our son is home, and daughter and her 2 kids are up, I want to do it with all their help. I want all of us to help cut off the hair in sections, a couple of inches from my head. And then I want son to use the clippers and cut it off. He's in the Air Force and does his own head all the time, so I'm hoping it is something he can do, and not upset him.
Then I want to take a shower and cry, and put on fresh makeup and a smile, and enjoy the rest of my day with them.
And I already contacted friends to get together Monday or Tuesday, so that would be my first time seeing friends, not family, with the new do. Might as well jump in...
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