Starting Chemo April 2016
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Hi, all. I started chemo on the 27th. Taxol, herceptin and perjeta for 12 weeks, every week. Perjeta only every three weeks. Then A/C every other week for 4 treatments. Apparently herceptin will occur every three weeks for the rest of the year.
The first day was insanely long. We left the house at 7:15 am and didn't get home until 9:15 pm. Three long infusions with wait time in between (I am part of the I Spy study at UCSF) and then cold capping, which adds a couple of hours.
I have been riding the wave. Feeling good then out of nowhere, will get hit by fatigue and nausea. It doesn't last long and I really have learned to have food with me. Luckily I have not had to take any mess to manage symptoms.
I have been able to keep exercising daily and even did our normal Sunday hike of 4 miles with climbs.
I do have indigestion, cramping (lower abdominal) drippy nose, some flushing and these really strange intermittent pains that pop up here and there.
But overall, doing much better hand I had expected. So cheers to that!
Very glad to have found this group
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Welcome SusanBP! I started April 29th and it's already up and down: nausea, feel great and take a long walk; flushed, achey, tingly, tired, take a nap; feel fine, read and chat with family, walk to store, etc. Just don't have a pattern yet. Planned a short hill hike for tomorrow but already feel it might be too much so cancelled and will try a neighborhood walk. Definitely do feel some deep bone pain but it is mild so far. Your chemo day was a very long day. I had a friend who did a cold capping trial two years ago at UCSF-maybe an earlier part of the same study. I hope it is successful for you.
Ksusan: I love the picture-thanks for sharing! It is encouraging to know we will be back to our normal lives later. I've got a collection of hats and scarves ready to go. Once my port site is sufficiently healed (4-5 weeks more, per Dr.), I look forward to swimming (one of my regular activities) again without having to wash and dry my hair after! A little bummed to be out of the pool for this period, though.
Wellshoot: Speaking of pools, I'm all with you on rocking that head wrap! It's all about your attitude! I haven't lost my hair yet as I just started this week, but I have acquired wraps and scarves (hand me downs, some purchases, some gifts) in 20 colors! It's all about being out and about and doing what we want, not meeting the worlds' expectation of how we are supposed to look.
Createyourownsunshine: I LOVE YOUR SHIRT and you look smashing in your hat! You are a supermom, it's clear!
Njr426: My husband buzzes his almost bald head daily, so when the time comes, I'm calling on his services. My very funny college aged daughter said (in jest) that we ought to do a totally politically incorrect social media spoof post. Have you ever seen those "Husband shaves head to support wife with cancer?" Well, in our house, it would be "Wife gets cancer to support balding husband." The post will remain simply an idea...but it does make me laugh a bit.
Re ports: For those wondering about why port or why not, for some of us, it is because we have weak or "rolling" veins; for others, if you are getting Herceptin, you are getting chemo for at least an entire year, so a port makes sense. These drugs are harsh and some may choose a port to lessen vein impact, especially if only one arm can be used for blood draws and IVs, due to lymph glands being taken from the other side (you shouldn't ever have a blood draw or IV on a side where glands were removed , due to risk of lymphodema.) My port is only a few days old, and it is still tender. It shows--I am pretty thin and the Dr said this is the one medical procedure where it is better to have more fat on you--but the Dr did as good a job as possible placing it in a less obvious place. I wore a camisole top of the skimpiest I ever wear (only around the house), and asked to consult with the doctor first. He looked me over, and drew with pen where it would go--it was a bit tricky because I've also had the BMX and have tissue expanders in, so there wasn't a lot of room to work with. I did ask in advance and my center ordered a slim port, which is the right size for me. Hope that helps anyone who is wondering. I know that you can always ask for one even if you started without. But if you are doing fine with IVs, that is great, becuase you will have a chest scar (maybe 1.5 inches) with a port even after it is removed. But for me, it was a necessity and I loved it even the first time.
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SUSANBP - Welcome to this group, and thanks for sharing your experience.
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I went for a nap yesterday evening and my hubby called me for dinner about 6.00 p.m. I came down and was so tired I could hardly eat it. I went straight back to bed at 6.30 and didn't get up until this morning. That was my first real fatigue since I started, but I am fine today. I sort of wake up a bit off each morning but as the day goes on I get better. No reaction from the Neulasta shot yet. Does anyone else here feel pain from this shot and if so when does it kick in ?
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Createyourownsunshine-Fabulous t-shirt and head over!! I love them.
Although I am on a different regimen, the main SE I have is fatigue. Mostly the week following chemo. The two intervening weeks are pretty good, energy and activity-wise. I'm doing a lot with my granddaughters and am working a modified schedule (offs few days after chemo, half time for a week, then full time until the next chemo). My management and staff are very supportive, as are my spouse and grandkids (silver lining noted).
Happy Monday, everyone
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just thought I would quickly jump in here…
I started AC chemo last Thursday 28th, felt so drugged from the anti nausea meds.
Went for a 4km run yesterday being the first day off meds to make myself feel better/normal.
Feel pretty good today, still no nausea only a mild headache and heavy joints every once in a while.
So excited to be getting out of the house a few days this week and returning to work next week as faffing around at home is really not my thing. I have two littles to keep me busy, but with the MIL here to help there is no so much for me to do…
Not complaining, just glad to be feeling so well.
I am in for the long haul with AC for 12 weeks, then paxitol? With herceptin for another 12 weeks and herceptin for a total of 12 months. That's as well as getting the temporary menopause shot every 4 weeks!! I have never taken so many meds!!
Anyway, I'll have to scroll back through your posts and find out about you all. Just thought is say hi first
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SusanBP - glad you found us! That is an insanely long day!! Sounds like you are local to me (I'm in the South Bay). I actually recommend taking the ant-nausea pills to stop the nassau. They do work and do a good job. But you need to do what works for you. Great job on the 4 mile hike! I'm still walking and working out. I'm a little weaker for a week right after - I can walk, but strength training is interesting. Good news is that the nausea part stays consistent, so you shouldn't feel worse that way as you go. Maybe just a little more fatigue. Good luck!
Zoziana - You have me laughing at the "Wife gets cancer to support balding husband!" I love your attitude.
I think you should go for it. Nothing like humor to help. Numb - sounds like you're doing much better this round. Fatigue sucks, but take down time when you need it. The Nuelasta shot does not really bother me other than some aches in spots where i broke bones or have arthritis (my knee) and even that is only when I push it and it's tolerable.
LimnoGal - I love that your company is working well with you. Mine is as well. I am still working full time, but I can work from home and can take time off as needed. So far I'm doing good. Have fun with your granddaughters. That sounds like a fun time.
Bimsickle - Welcome! Glad you checked in! What anti-nausea meds are you on? I'm working because I can't stand sitting around staring at the ceilings. I need to do things. Sounds like you're coming through pretty well and have the help you need. Have fun with your littles. They will keep you on your toes. I also one who is typically meds free, so this weird for me as well. Best to you!
Got up at my normal time, for the first Monday after chemo ever. Slept well, which is also unusual as this is when the steroids wear off and for some reason that keeps me awake. I'm so backward.
I'm going to try a nice easy lower body workout, then a long walk this morning. I'll see how I feel after that. I am hoping to go into the office today. Happy Monday everyone!0 -
CJ - the woman at the wig store gave me a couple of basic wig caps to use. She did recommend getting the bamboo fiber ones (they were out of stock when I was there). She said they're soft and good with moisture wicking which might help in the summer. I had to laugh when I looked in the mirror this morning - totally flashed to the picture of the bird you posted earlier! That's pretty much my hair now!
Sunshine - love the shirt! The food cravings were something I didn't expect. And as CJ said, nothing healthy! In our 'normal' life, it's rare that we even eat fast food twice a month. Now all I want is burgers and fries and pizza! I did just say to a friend yesterday that it's like being pregnant with these cravings!
Bimsickle - maybe your doctor can adjust your meds. Compazine made me feel druggy and I asked if I could just take Zofran and she was okay with that and it's worked okay for me. Maybe there's something that would make you feel less out of it.
Zoziana- i think your 'wife supporting balding husband' post would be funny!
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BIMSICKLE - Welcome here. The first round is probably the hardest as we don't know what to expect and anxiety creeps in. The steroids give us a boost for the first few days and then we can crash on about day 6, at least that's what happened to me, but I am on round 2 now and doing things differently, so I might get lucky. I would probably put it like "I am not running on all cylinders" but I can do what I want to do if I make the effort. It's good to get out of the house and it is good to push yourself to do things because then you will feel better. I found that yesterday I slouched around, never got dressed and it made me feel worse. Today I have already been to a large shopping mall, had a good look around at the new Summer clothes coming in, bought a new dress and new baby clothes for my new grandson, and I feel good now back at home. My wig is starting to sit in place nicely so I felt good about myself today.
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createyourown- welcome! I also love your shirt! I totally relate to super mom! My kids (8 & 11) are being forced to learn independence. It is good for them.
Zoziana- balding husband!!! Lol! Mine is bald too & his mom got us both do rags for our heads.
Susan- welcome! I'm impressed that you are working out! I went to the gym just once & felt great after. I probably could go today. Actually, I will. Thank you for inspiring me!
I'm so glad it is May!!!! April 2016 can kiss my ass.
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shared this in the FB group, but for the rest...
My new chemo shirt!
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CJSHARMA - I am doing things differently this time Christine. I haven't been taking the Motillium as I put that down to my last heart problem, and this time it has not reared its ugly head, so I am delighted about that. I am going to go out for a walk in a few mins before I settle down for the day. It is 14.29 here now. That's great that the Neulasta shot didn't effect you much. It is now 48 hours since I had it and so far so good. I did take the Claritin though and will take that for about 2 more days, just in case it is the reason I am getting away Scott free. It will be great not to have to worry about the low white cells though.
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TWAS - love the shirt. You look smashing !
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Numb- I want to see a photo of your new summer dress! I imagine it is lovely. I just ordered a lovely light turquoise blue ruffley summer head scarf that I'm envisioning wearing with a navy blouse and white skinny jeans with a red hand bag for American 4th of July! (It's a big holiday my extended family celebrates at a lake.)
Twza: Love the cancer and chemo T-shirts that you are others are posting. Embrace the fight! Can you imagine how horrible breast cancer would have been for our mother's generation? First, treatments were so much less effective, and much more harsh, but second, there was shame in having breast cancer and because of this, no one would talk about it, so most women had very little support. We are lucky...and thanks to feminism for bringing this cancer out of the shadows. I'm really grateful for this group!
Bimsickle- I agree with njr426- Check with doctor about eliminating compazine and switching to Zofran. Compazine is a much older anti-nausea drug (thus, cheaper) that has quite a lot of side effects. I can't take it. Ask for Zofran. It can be given IV or in pills. (Zofran is very constipating for most, so unless your particular chemo blend is causing diarrhea (like Perjeta, for example), you will want to look into stool softeners and/or laxatives per your doctors orders. I have to take a colasce and use Mirulux daily from infusion day to day 5. There are other choices but you may need something.)
I walked the dogs this morning with my husband, a moderate 2 miles. It felt good, though I am exhausted now. But I am going to go out later to the store to stock up on a few things, as my husband is leaving town for bit. I am getting quite a lot of finger and foot shooting small pains (common with Taxol) so I will use frozen peas next week (all my MO will allow), so that's the number one item on the grocery list!
Hope you all have a good Monday!
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hi everyone - I just had my BMX on the 19th. My left breast had the cancer, DCIS and IDC. I am HER2 +. I'm meeting with my BS tomorrow to talk about my treatment plan- Herceptin for sure. I'm not sure how long they have you wait after a BMX to start chemo but I'm ready and not ready. Little anxious on what to expect. It's been such a process. Lots of ups and downs.
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HEATHET - Welcome for popping in. I don't know much about how long chemo takes after a BMX but I am sure there are others here who can tell you. It took 6 weeks after a Lumpectomy for me. Believe me this stage is the hardest part, when it is all sudden and new to you and you don't know what to expect. Once you start treatment it gets easier. I have noticed that there is a May 2016 Chemo forum starting up and you may find women at the same place as you are right now, but I am sure that some of our posts will be helpful to you too. Best of luck with all your treatment.
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Heathet - Welcome and good luck with your meeting tomorrow! We are similar in that we're both HER2+, grade 3, Stage 2A. I',m a few steps ahead of you and would offer the following advice when you meet with your oncologist:
- Ask about the possibility of including Perjeta in your treatment which is also for HER2+ cancer. For post-surgery (adjuvant treatment) it's normally only used in metatastic and/or recurrent cancer. However, it can now be considered in cases like ours that are new and have not metasticized. It can be a little tough - in terms of side effects, diarrhea is the big one here. It's been manageable for me so far, but it can be rough for some people. It's a great drug and we're lucky to have it now in our arsenal. (Note -it's expensive and my insurance denied it initially, but my dr was able to speak with them and get it approved)
- Herceptin can be hard on the heart, so be cautious if your dr recommends combining it with Adriamycin . Adriamycin can also be rough on the heart and my doctor did not want to combine them for that reason. My treatment is Taxotere, Carboplatin, Herceptin and Perjeta (TCHP). I go every 3 weeks for 6 treatments, then will continue with Herceptin for a year. Your doc may recommend something different (I'm also ER+ and PR+), but I thought i'd share.
Feel free to PM me if you wind up with the same regime and have questions. I'm heading in for round 2 tomorrow.
0 - Ask about the possibility of including Perjeta in your treatment which is also for HER2+ cancer. For post-surgery (adjuvant treatment) it's normally only used in metatastic and/or recurrent cancer. However, it can now be considered in cases like ours that are new and have not metasticized. It can be a little tough - in terms of side effects, diarrhea is the big one here. It's been manageable for me so far, but it can be rough for some people. It's a great drug and we're lucky to have it now in our arsenal. (Note -it's expensive and my insurance denied it initially, but my dr was able to speak with them and get it approved)
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Great shirts!
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Went to the drs. today. WBC count is really low. She just put me on an antibiotic for preventive purposes and told me to watch for any kind of fever. I am on day 7 which she said is one of the lowest days but I guess I was too low for her liking. I didn't see her until day 10 last round and my numbers were good then but who knows what I was on day 7 that time!
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Dexamethasone (dexmethsone) was the one I had to take 2 days following AC.
Day 3 off it now and I feel pretty darn normal, I may have even managed to drink enough water through the night to combat the morning dull headache!!
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njr I am day 8 and when they ran my cbc, my white blood count was way down too. Of course I come home to find a sick kid. I quarantined myself in my room and hoping to avoid catching it for a day or two till my count goes a little higher.
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Hi everyone. Nice to have a group who understand.
Numb: I am doing the AC every two weeks. Dana Farber in Boston recd that instead of every 3 because the stats were better. I got a second opinion there, because I live nearby in Maine. I also had some genetic testing done. Still trying to figure all of that out. Tested positive for TP53, but they want more tests to prove it.
I love the t-shirt about paying the oncologists big bucks. I started collecting a couple of cancer shirts. Excited about my third chemo this friday. Each one gets me closer to being cancer free!
I saw that some of you are getting Neulast a few days after chemo. I have to get mine the following morning along with a liter of fluids (that makes me feel better). Just curious about the difference.
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Zoziana - I used ice bags on my toes and fingers for the Taxotore. Both for neuropathy and to prevent nail loss. I haven't had tingling or nail issues. It's only been one but so far so good. Next time I will add rubbing alcohol to the ice bags so it works more like a flexible bag of peas. My swimmer girls taught me that trick. My onco didn't have a problem even when I asked about blood flow and cancer floaters. He's pretty funny and kinda looked at me. He said just move your fingers and toes periodically but the chemo is doing its job.
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Hi everyone,
Well I forgot my charger for my laptop on my weekend getaway with my daughter. I'll catch up with everyone later but just want to report in that I had a great time, super energy and yesterday we hiked 6 miles along the Icicle River. I'm day 19 from Round 1, TCH. Cold capping appears to be going well, just some minor shedding. Supposed to be day 20 - 21 with cold capping where major shed occurs so we'll see. Friday I called about my white blood cell count, it super rebounded and went up from 2.2 to 27. Yay for my white blood cell army. Tomorrow I see my MO which I'm feeling good about. I was an anxiety psycho case the last times I've seen him and I'm really looking forward to being sane! Catch up reading later! Hugs to everyone.
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HEATHET - Welcome to our group. Waiting is the worst part but don't worry, it gets easier once you begin treatment.
anniekaja11 - Great to hear your WBC army go up. Mine went all the way to 4 before 2. round.
My second treatment was not as pretty like the first. I went to work yesterday and quickly regretted the decision but I'm better today. (No nausea at last) . This time I didn't get heartburns and cramps. Now back at work and the fog has lifted - yay
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AGHARTA - I think the second round is easier to cope with because we know what to expect and we don't get as anxious with each day, but the side effects are more or less the same, but we cope better. That's how it is with me. I got constipation for 5 days after the last chemo, took Senokot on Day 5 and had a terrible 24 hours going. This time I got a good tip from a friend, to buy a tin of Prunes in Syrup (the ones in their own juice are awful), and eat a few after your breakfast. I ate 6 after my breakfast yesterday and I had a normal BM afterwards, so I was very pleased I didn't have to take any further medication. I will do that again today. I have to admit I would find going to work hard. Although I find when I have something to do I fare out better than if I sit at home and lounge.
I also found for Round 1 I was washing my mouth out 4 times a day with a strong mouthwash and I believe it caused me irritation of the mouth. This time I just rinse out morning and evening with Biotene and I have had no irritation so far.
How many days do people here take their anti nausea meds after chemo day? I am on day 4 now and still taking Zofran, Claritin. How long after infusion day do we need to be on anti -nausea tabs ? Can you take Valoid as well as Zofran or would that be too much. I probably don't need the two, but just first thing in the morning when I get up I am not perfectly anti nauseated.
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CJSHARMA - how is round 3 going for you now ? Did any of the side effects accumulate besides the fatigue and did this get better ? It must be lovely to think you only have one round left of it !
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Good Morning everyone,
So many posts to catch up on! I hope that everyone is feeling good today.
Im still fine but one definite SE this time is hoarseness. My voice is shredded! Throat is not sore but just wondered if anyone else is suffering this with AC treatment?
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numb I only had to take anti nausea meds for 2 days after AC
gracietoo are you given icypoles whilst they infuse the AC? I was given a lemonade one and no ill side effects in my mouth.
5 days past my first chemo and I am feeling pretty normal. Even went for a 7km run today again
I am very glad that I am not waiting in anymore tests as that was the worst part I think. I found out from my oncologist when I went for my first chemo that the multidisciplinary meeting wanted to do a core biopsy surgery of all my lymph nodes and postpone chemo for 2 weeks!! My oncologist said no, and told me about the debate. The sneaky surgeon even called me during chemo to see if I had started yet and if I would go see him!! That's nuts!!
My needle biopsy of my lymph was clear, CT scan, bone scan thyroid scan all clearso I am content with that.
No more waiting for results!!
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GRACIETOO - Nice to see you back. I had a sore throat about 10 days after the first round, but then it cleared up after I had the antibiotics while in hospital. This time I am not using as much mouth wash and I seem to have a better mouth. I gargle the back of my throat with Biotene as well as my mouth and so far so good.
BIMSICKLE - I find that I feel drugged up to the neck today. I only took Zoton (antacid), Vit. D, Claritin, Zofran and Valium this morning but I guess that's enough. I do not take the Valium on a regular basis but I was told if I felt any heart strain to just take it to loosen the muscles so I took it today, but probably won't take it again unless I feel I need to. I will try staying off as many drugs as I can from tomorrow, as they definitely keep you feeling tired, especially around the eyes. My face is a bit puffed and flushed and that doesn't help either, but I am happy enough with this round, so far.
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