Chemo starting June 2018
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Sorry Kat22, that is so upsetting! I hope it turns out to be inflammation.
I've been using neulasta. I had some nasty bone pain the first round, minimal the 2nd,and moderate the 3rd, but then realized I had missed a few doses of the claritin, so I do think it helps. Also ibuprofen helped a little during that worst 1st round, and a lot during the others. I was not supposed to take tylenol, but when I called the nurse, it sounded like it was just that they didn't think it would help in the beginning, because she said I could take it instead of ibuprofen once the ibuprofen was eating my stomach.
I went to an outdoor concert with a group of friends and acquaintances tonight. One who remembered me (he looked familiar??) said to me "you have hair under that (my scarf) right?" I just matter of factly said "nope.". He said "oh really? what happened?" So I said "it fell out." Then he said "oh. I didn't know that". [end scene] So that sort of answers my question of what people think when they see my scarf, most people are too polite to bring it up and say why are you wearing that thing on your head?, but I guess maybe there are some people who think it is just a thing on my head. I am getting awfully tired of having to match them to my clothes, though. Maybe when it's cooler out I can do the wig thing more. But I'm already tired of that too.
4th and final round of TC on Wednesday. Anyone else? Even though it will be my 4th round, I still feel nervous that it could be different or worse this time.
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My 4th final round of TC is this next Friday, Other than tamoxifen for five years that's it for cancer treatment. Time to start to rebuild. " There is nothing stronger than a broken woman who has rebuilt herself" - Hannah Gadspy
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Rachel - I can't remember all of your story or stats.....but, why are you not having radiation?
My last TC is August 20th. I met with my rads onco before chemo, so I assume I will have another appointment soon. Before starting chemo she recommended around 35 rads treatments. I guess it will start sometime in September.
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I'm right on schedule with you "TC" ladies - last one (#4) on Aug 16 this week (and yes, out_and_about, still a little nervous that the SE will be different but one day at a time!). Like LibbyLouWho, I have radiation starting early September. I see my RO in a week for the final decision of the duration (hoping for the Canadian protcol of 4 weeks instead of 7) and to get scanned and marked. After that, 5 years of aromatase inhibitor. Stay strong everyone - we got this!
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Had # 4 of Dose Dense AC last Friday. Felt pretty crappy this week. So glad to be done with this part. They say that the weekly Taxols will be a bit easier. Hope they aren't lying just to make you feel better. The 12 weekly with other apts. is sounding exhausting in itself. Hard to believe it's only 7 weeks into 20 weeks of chemo. Starting Herceptin next Friday too. Can't even comprehend that I will only be finishing that NEXT August. Had an echo this week. Hopefully heart holds out. Lots of palpitations etc. with AC. Regular echos on Herceptin apparently. It's still all feeling surreal, even though I've gotten through surgery and the first part of the chemo. Still seems impossible that I'm on round #2. (not a recurrence)
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When my path report came back with no node involvement and clean margins after double mastectomy they said I wouldn't need radiation. The chemo was precautionary to get any "stray cancer cells". Perhaps it was because I had mastectomies instead of lumpectomies?
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I hav just finished ddac and had my first taxol. I will be adding carboplatin to every third treatment, could someone tell me how this will compare to ac as the treatments are only a week apart. Just a little wortie
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I haven't even met with the radiation oncologist yet. My other docs had told me it would be 6 weeks, 5 days per week. It sounds overwhelming to do this every day, and even though I am told this is easy compared to chemo, I am worried the side effects will be worse for me. At least with chemo you get to recover between treatments. I am hoping to find out when I should see the radiation oncologist this week at my follow up appt. With everyone on summer vacations, I have a new NP for my follow up (I had seen a different NP last time, and haven't seen my onc since before round 2) scheduled just 1 hour before my infusion.
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bgirl:
Like you, my grandmother had it twice, once in each breast, not a recurrence, about 8 years apart I think.
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Rads is always every weekday but the appointments are really short (like 5-10 minutes once you get changed and into the room). The only SEs are some skin impacts, which won’t show up for several weeks, and maybe some fatigue. Yes it’s a hassle to have to go every week day but it is very quick and SEs are minimal. Nothing at all compared to chemo
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For those getting radiation - here's a link from this site talking about the updated (March 2018) recommendations by the Am Soc of Radiation Oncologists suggesting that many more women are candidates for the shorter radiation treatment (sometimes called the Canadian protocol). They're finding similar long range outcomes in terms of recurrence.
https://www.breastcancer.org/research-news/accelerated-whole-breast-radiation-new-standard
My RO is reviewing all my path reports, my BRCA2 status, etc. and will make a recommendation to me in 2 weeks.
It may not be for all but good to at least have a conversation with your RO about whether this is an option.
Stay strong!
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Kat22, please do let us know what you learn about your tumor—I do care!
Done with dense dose AC and am so glad. Hives, rashes, Thrush...way worse even than the fatigue. Am hoping the 12 weeks of Taxol go better. I start Tuesday. Finish at Halloween— I am not scheduled for radiation after. Bilateral mastectomy and clear margins with no lymph node involvement—oncologist said that unless something drastic changes, there will be no radiation.
On the up side, I was able to go to the dentist, an outdoor music in the park event, birthday lunch with granddaughters, attend monthly book group meeting, and birthday celebration with friends this week end...what fun to be out with people having fun. Still have the rash, but that is minor. Now ...onward to start (and finish) with the Taxol. Good luck to you all, chemo warriors
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Thanks for the article cc738nj! 3 weeks would be so much better than 6. I'll definitely bring it up.
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Hi Ladies,
I just finished my last round of TC #4 last Thursday, August 9th. I ran a fever this time but luckily it didn't hit the temp when I would need to go the emergency room, but it was so close. Just hoping that it'll get better day by day. Now off to my exchange surgery in about 3 weeks, then rads. Then Tamoxifen for 10 years. Hang in there ladies! Thanks for sharing the chemo journey with me!!!
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Out and About
I had the "Canadian Protocol" in January/February of 2012. 16 vs 25 and 4 vs 5 tumour bed boosts (an age thing). My past and current RO (love her) was one of the Dr.s who had done this study at a nearby university. It was definitely easier to have 20 vs 30 treatments time wise. However, with the fractionated dosing you are still getting a similar amount, just faster. SEs kick in a little quicker, so make sure you are doing the proactive skin care suggested.
Sometime around December/January (finish 20 weeks chemo around beginning of November and then month washout) I will be doing the 25 +5 as a regular schedule. My field of radiation is wider with nodes above collar bone being done too. Different diagnosis this time. So great to ask questions and options, but some of the decision may rest on extent of disease, etc. But, it is always good to understand why any treatment is being recommended to YOU and not just that your Dr. gives the same recommendation to everyone. Your body. Your right to ask questions.
Hard to judge SEs as everybody is different like chemo. I was very fatigued the first time and had skin breakdown, but I knew many women at my cancer support centre who got "a bit pink" and sore like a bad sunburn. The SEs peak a week to 10 days after last treatment and get better fairly soon. Having just done 4 rounds of DDAC, radiation was much more manageable.
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Just chiming in from the May group on 20-vs.-33 radiation sessions. I had 20 last time around and was expecting the same this time (even scheduled a vacation that I subsequently had to move). I asked why 33 this time and my RO said it was because of chemo (which I didn't have last time)--she said the skin is more tender after chemo and doesn't hold up as well to the increased dosage with 20 sessions. Oh well. . .
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Bgirl & Ingerp - really appreciate the information on your previous experiences with radiation and why one versus the other!
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Well, after one DD of Taxol last Thursday, I’m in pain and my dr is prescribing Norco. Crud.
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RosieRed, what did your onco prescribe you for the pain? I'm going to ask mine to prescribe me something stronger for next time. I was only taking Advil and Claritin. It's 10 days from my first dd Taxol and I'm feeling much better now. I also ordered some transdermal cbd and see if it will help
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Popcornme - Dr prescribed hydrcodone-acetamin10-325 mg. Instructions to take 1 pill every 4 to 6 hours for pain as needed. Hope it helps.
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just had my 3rd TCH infusion today - halfway done - doc gave me some lactulose for extreme constipation I’ve been having the first week after treatment so I’m hoping that helps - makes me feel terrible - and still hoping my hair hangs on with cold capping. I still have prob 85-90% but my hair is thinner and finer to begin with.
Hope u are all doing well!!
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Bheg79:
If you are halfway and still have 85 to 90% of your hair your hair is doing better than mine. I think I've lost 40 to 50% and have a baldish region on top.
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WC3 - I do have a definite thinning area on the top as well - I only worry as I don’t have a thick head of hair to begin with - I am shedding every day and it has slowed down this last week or so - can I ask what cold capping method u are using (I’m using paxman) and what treatment u are doing and which infusion number you r on
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RosieRed, thanks for the info. I hope you feel better soon!
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congrats Domzie
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Final chemo TC Friday and have gotten through with relatively manageable SEs. I'm feeling a bit more rundown going into this one. I'll find out how my blood counts are tomorrow. I suspect they won't be as good as they've been last three times. New SE is watering gummy eyes. I don't know if it's the smoke here in NorCal or near no lashes or a little infection. I'm also getting big itchy welts moving around my body. At first I thought it was mosquito bites but now I'm home and we are bug free inside. I thought it might be shingles but I don't think so when I read the descriptions online. I've taken Benadryl the last two nights and am using topical cortisone cream. If my blood count levels aren't great I may need to postpone my exchange surgery which will postpone getting back to work. I'm so ready to get back to my life!
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Bheg79:
I am on TCHP and am using Dignicap. I have finished 3 infusions. For the first infusion, I don't think I got enough of the cap coverage on the top right side of my head on account of my skull shape and that is also the side I sleep on, so I think that is why I have the most hair loss there.
I had thin hair to start with as well but my hair grows slowly so I was hoping it would be more immune to the chemotherapy. It wasn't. I still have most of my eyebrows and eyelashes though.
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Done DDAC. Approved today to start on 12 weekly taxols and first Herceptin (every 3 weeks x 18) starting on Friday. Glad to be done with AC and glad to be moving forward on schedule.
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It's been hot here too and I've got hot flashes on top of it. I ventured out on a particularly hot day a few days after my last infusion and only made it about 200 feet before I felt like I really had to sit down. I'm starting to think this would have been much more pleasant in cold weather.
My mom had a treadmill laying around that her boyfriend brought over and I have placed it in front of my air conditioner to get some light walking in without venturing in to the heat and leaving the proximity of a bathroom.
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Rachelcarter- I had some sort of eye infection after round 1. I asked my doc if I should treat it even though we both agreed it is probably viral, just in case since I am on chemo. He asked me what to write for this, lol (I work in an ER). I guess it is not all that common of a side effect. Anyway, I had to throw out my contacts and I used ofloxacin drops and it cleared up, maybe it would have anyway, was just being cautious. The welts you are describing sound like hives. Benadryl and cortisone are good, if not responding much, try benadryl 50 mg 4 times per day (will make you sleep). Or you can switch to a nondrowsy antihistamine like claritin or zyrtec. You could also add pepcid or zantac. I like zantac + zyrtec combo. But you probably want to mention it to your oncologist.
So I had my last round of TC yesterday! I actually got out faster because they were able to run all of the meds at the full infusion rate instead of titrating this time. No allergic reactions, still alive. I was drowsy after benadryl and already what taste buds had returned are gone. I am having difficulty sleeping and a sour stomach from the steroids, but otherwise things are well so far. Neulasta should go off this evening, then I suppose tomorrow my side effects will kick in. My NP told me the bloodwork (hemoglobin and hemotocrit) is trending down but is still essentially normal. I had mentioned increased shortness of breath and fatigue when running. She thought this was just a chemo side effect but could also be that my numbers are lower than I am used to, even though they are not as low as people usually start to mention the effects. So I am kind of expecting those symptoms to pick up even more this round, since my numbers have progressively lowered each round. I'll just have to wait and see what happens and do what I can.
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