Chemo starting June 2018
Comments
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bobby--- thanks for the suggestion for constipation. I will look for that to try. I've been taking Senekot everyday, and I've never had this "problem" before.
I put my leave request in for work yesterday which made it seem real. I've had 2 treatments out of 4 this summer, and as a parapro, I would have to go back on the 30th of this month. I decided being around all those germs (but sweet) kids want worth it. This last treatment has really made me more tired and nauseous than the first.
I've read several of you are trying to walk, so I hope I can start that soon. Right now I can't walk to the end of the driveway and back without feeling exhausted. It's emotional to be 41 and so restricted to my home. Anyone else feel like this?
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UGH and wahhhh. Infusion #2 of TC was Monday, and this is Day 4. Days 2 and 3 were both horrible--I was too sick to do much most of the time. Constipation is a constant challenge---I do everything: 2 stool softeners and 2 Sennas each meal + 2 prunes, and also Miralax in the morning and I even had to have an enema on Tuesday---very awful. So, I'm working hard on hydrating. I get through the days with Zofran and lots of sleeping, and some CBD oil which helps me be able to get some calories in. Infusion #1 was easier the first week than this time, so maybe I'm having cumulative effects. Also, I had a port put in 3 days before Infusion #2, so I really am not healed all the way. Sore from that now that my megadoses of steroids are done.
My infusion clinic gives me excellent pre-meds that are anti-emetics, and which last a couple of days: Aloxi and Emend. And, the day before infusion and also Days 1 and 2 I have huge steroid doses. Day 2, I get Neulasta. So, I take Claritin, and I think the crash on Day 2-4 is the pre-meds wearing off, and the steroid crash, and the Neulasta. It's just a week to survive, and I'm trying to keep up with 2-3 qts of water every day.
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Hang in there HikingLady! TC #3 on Monday for me and I know that dread about what next week will be like. I'm homesick seeing you are in Portland - I'm a native Oregonian but living in NJ.... I so miss Oregon!!!! Stay strong.
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Money saver alert: Just in case this will help someone else, I was sticker shocked when I went to buy Immodium last week (my DH bought the first bottle and I had no idea how expensive it is). I paid like $14 or something for 24 pills of the store brand. Actually remembered to ask the doc yesterday if she could do a prescription, she said sure. I just picked up that script and it was 120 pills for ZERO out of pocket. If you're in a similar situation, ask. That's a good bit of money saved over the long haul.
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I started weekly Taxol at the end of June, but only just found this thread.
So far my complaints are all manageable: my hair began falling out seriously the morning after the 3rd infusion, and I have mild bloating in the afternoons. A runny nose that got a lot better once I bought a moisturizing spray with aloe. Some photo-sensitivity. Also, I am suddenly lactose intolerant! I have read that that will go away after treatment.
On the other hand, I'm running more than I did before chemo, and I feel strong. So I'll deal with these other things.
Best to you all!
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DDAC #2 went better than the horrible first round. Between the new anit-nausea, slowing the one drip down and getting something for the acid re flux stomach was much more manageable. I too have been having the rapid heart beat if I move around or even climb the stairs. Humbling when you are used to exercising and you suddenly feel exhausted and nauseous at the least exertion.
DDAC#3 tomorrow. Hoping the improvement in nausea sticks again. Kind of got the impression yesterday that they were warning me that the DD toxicity will kick in worse for #3 and #4. Without the 3rd week to recover, body will feel it more and more. Trying to remember that it is only another 4 weeks.
Neutrophils 3.75 after round 1, 2.94 after round 2. So holding on, if decreasing.
Went to access port yesterday for pre treat blood work. No go, after 1 hour of attempts ... including literally standing on my head, so they had to go with clot busting option. Took 2 hrs. Thankfully didn't have to do a second dose. Hopefully it will be okay tomorrow and yesterday's antics will save me a long day in the chemo suite.
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Is anyone else here doing Taxol first, and AC after?
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Hi Ladies,
I just finished my 3rd infusion of TC and feeling pretty ok right now. Hopefully the rest of the SEs will still be very manageable. One more to go! Hang in there ladies!
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Third DDAC was 3 days ago and serious fatigue hit today. On holiday with family at beach condo and have yet to get to the beach. I can see it from where I sit, but walking over seems like miles...actually just across the road. Day 3 seems to always be my worst day. I keep in mind only one more of these before taxol. Enough whining. I have my two granddaughters here and the sun is trying to shine! Tomorrow will be a better day
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Hi ladies, I am reading about your experience and hoping to prepare myself for my possible chemo in September. As for now, I am not sure if I should get chemo, my oncotype result came back and I scored a 24... I am 43 so my former (I am switching. I asked for second opinion, he went ahead and suggested that I switch to another physician) MO strongly recommend chemo, but I was told by my radiologist and his NP that he likes to give chemo. I have a 15% recurrence rate with tamoxifen alone, so I am trying to weight both choices. Anyhow, I was told that I should do some research on what type of chemo drugs ar better for me should I need chemo. I was wondering if someone can let me know how to find information on this. I am stage 1, phase 1, 0/4 node. ER and PR +, HER2-. Thank you in advance. I was told by my former MO that I will need 12 rounds of taxol follow by 4 rounds of AC. From what I have read so far, I feel that the choice is a bit too aggresive.
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Hi JNKK - I too was struggling with the chemo choice - I am 48 and Score was 21 and tumor was .5mm, Stage 1, Grade 1 ER/PR+; HER-. My tamoxifen recurrence % is 14 but reduces to about 8% with chemo. My MO is requesting 4 rounds of T and C every 3 weeks. I am likely going with it because I don't want to look back and regret not doing it. Good luck. The choice is more difficult than I thought. While I am happy the TailorX study helped so many people - the ones under 50 are still in a grey area! Take care!
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Sunnybear - I am most likely to do the chemo too. I know that the drugs given are depending on the charactistic of age, size of the tumor, the percentage of ER and PR and number of different thing. Did your MO say anything about why he/she is choosing TC for you? I am just wondering what type of drugs to ask for when I meet with my new MO.
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JNKK - Just noticed we have same surgery date 5/30. My MO chose TC as she said it was a "milder" form of chemo and that other regimens would be overkill for my characteristics. I would ask about the Oncotype study and how it was based on using CMF chemo and whether or not that matters; also ask about chemo effectiveness on low grade tumors. They were my only additional questions and still was told TC is best option.
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JNKK
Hopefully your MO can contextualize the whole array of risk-benefit ratios for you. Go ahead and ask specific questions in this discussion, so that the MO can explain which research and statistics are informing his recommendation for your best treatment plan. Oncologists study all of the pathology descriptors and their treatment outcome statistics. Yours should help you understand what all of the options are, and how to weigh them. It's weird that when you said you wanted a second opinion, that your doctor fired you! It's normal for a patient to seek a second opinion for such a huge decision.0 -
While I was waiting for my Oncotype score I made a decision that if it was 25 or over I would do chemo and 24 and below I wouldn't. It was 26 and went for chemo. I'm 54 so that might makes things different but I just didn't want to be tortured with yet another decision. The oncotype scoring factors in your age I think too. The day I got my score was the day they came out in the press saying that for estrogen and progesterone positive patients the score was being split into two categories rather than three as it had before where above 18 and below 36 was a gray area: now below 25 no chemo and above 25 chemo. These decisions can make you crazy. I got a heads up on this impending change from the onco Dr at UCSF that I got my second opinion from. I expect insurance companies will eventually start to follow these parameters.
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SunnyBear and HikingLady - Thank you. I will be sure to ask lots of questions on the different types of chemo and side effects and benefits. My former MO didn’t take time to explain different types of chemo, hejust told me what he wanted to give me for the chemo treatment. I didn’t get a good feel about him the first time I met him, so I glad to switch physician.
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JNKK- I am 41 with almost the same story as you. My oncotype score was 28. I also got a second opinion, and luckily both doctors agreed to the same treatment plan. Taxotere and Cytoxen in 4 treatments. The main question I would ask is what percentage they would give with no therapy, with tamoxifen only, and with chemo + tamoxifen. For me, it was about 10% decrease with each therapy. That was enough for me to go ahead with chemo. I look forward to hearing what your new doctor says. I'm sorry you are her, but this forum is an amazing place to find others on the same journey!
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LibbyLouWho - my former oncologist is very old school, plays by the book. He suggested that I do 12 rounds of taxol weekly then 4 rounds of FAC 3 weeks apart for total of 6 months chemo. I actually met with his NP alone when I questioned my treatment plan (my MO never intended to order oncotype test, that’s why I questioned), and she told me if i need chemo treatment then it would be 6 months. It hit me this morning that it means it’s his standard procedure, there is no tailoring to fit each person’s unique situation! I was told with tamoxifen along is 15% recurrence, but with chemo and tamoxifen is 7.5%. I will have to make sure that my new physician won’t follow his guideline blindly. That’s why I want to educate myself as much as possible.
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Anyone else experiencing pain in their feet/hands? My pain is primarily in my feet and started a few days ago (so day 8 of my second cycle AC).
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I started Friday. I’m on AC and then Taxol. No choice for me. Tested positive for BRCA I. I cut new cute bangs since I’ve been afraid to before. This way no commitment. Lol. I have fatigue and a headache. Getting hydro infusion helps. Good luck deciding. So much at once.
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Sherylann, I do have the same symptoms, and some more: skin is peeling, sensitivity to heat, two toenails changing colors. My MO says it’s hand-foot syndrome brought by AC. It’s supposed to subside once we are done with it. I am done, actually, so waiting for the tide to change. She prescribed Urea lotion for hands and fee
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InnaB2018 - I have not heard of this as a side effect of AC
I have peeling on my heels. Nothing with toenails (yet). Hands are just a little sore. Feet are killing me!!! I started slathering Urea yesterday. Seems to help a little. I hope it ends soon for you (and me too!). Thanks for responding. Looks like you start Taxol soon. Will you be doing every week for 12 weeks, or every other for 8 weeks?0 -
Nicole1966, that is brilliant about the bangs. I have to say, I'm loving my pre-emptive buzzcut (although the little hairs are super annoying as they fall out!)
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I have to say for me, the chemo,definitely has been accumaltive. It’s been getting harder every round. Nausea lasts longer, fatigue gets worse, and body pains. I feel like there is something stuck in my throat so between nausea and that, I can’t eat. Lost 6 lbs. in 5 days.
I know I will get better but it’s been taking me longer to recoup and then back again. So tired and depressed.0 -
Hi timetobebrave, I feel you. Had my 3rd TC infusion this past Thursday and yesterday I felt like shit. My nausea has been bad too, I didn't get it the first round, but by the third round I felt like anything little thing could trigger it. Yesterday and today were beautifully sunny but the the thought of getting out was so tiring to me that I ended up just staying in.
Try to get something in you, like fruit smoothies. I find that cold and frozen stuff are easier for me to tolerate. Hang in there!
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Sherylann, I'll be getting 4 Dose Dense Taxol sessions every other week. Scared out of my mind...
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Found out a week ago that I have a blood clot at my port. I had swelling of my right arm (port on right side) along with pain. I also had edema to my lower extremities. Gained 6 pounds in one weekend. MO says edema to lower extremities from the steroid. Now I have to inject myself with an anticoagulant every day. Just thought I’d share in case someone else has the same sympt
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InnaB2018 - I am so scared too!! When do you start the Taxol? I think I will be starting August 22nd ... so plenty of time for anxiety levels to reach new highs! LOL Tomorrow is my 3rd AC cycle. I am always very crabby and emotional the week of infusion. I hate this rollercoaster!
3LBirds - Oh my!! Now that is scary! I had 2 nurses and the NP all looking at my port last infusion because they were worried about a hematoma! Freaked me out! I think it is fine now (I think?). How long will you have to inject the anticoagulant???
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Sherylann, I start Taxol this Friday. You are right about the emotional roller coaster. Can’t wait for chemo to be over. Third and fourth AC hit me harder then the first two, but now they are over, thank God. To be continued..
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timetobebrave70, I'm just hitting a tired period too, week 4 of weekly taxol. I just got the blood counts from last week, and I can see why: they had been pretty steady, but now they've fallen. Oooph. Also, I get the infusion Fridays, and Monday/Tuesday is when it really hits me.
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