August 2015 Chemo Group
Comments
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HEY!!!! im doing penguin caps too. only had one treatment so far though, and im terrified!!!!!!! the oncologist told me shes only seen 50/50 results with the caps so im paranoid about every hair. let me know how it goes for you since you are ahead of me. thank you
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Welcome Lisa.
@Mama-Bear I am on TC 4 rounds every three weeks. Round one I had a sore throat from about day 5 til around day 10 despite frequent rinsing with baking soda and water. I had a wicked case of thrush with no mouth sores though. I finally gave in and started using the nystatin rinse that was prescribed for me to deal with thrush and mouth sores. I don't like to use it because it has anesthetic that makes your mouth, tongue and throat numb for about 15 minutes, but once I tried it I shook my head at myself for not doing it sooner. Within 2 days the thrush was gone, and the sore throat with it. This time around no thrush, no sores but my gums and the roof of my mouth feel like they are coated in stucco. My taste buds are slowly coming back around. Today is day 9 of round two. All the best.
@Kate, I haven't tried the Labatts one in years since it first came out. I don't like Labatts either. I'm a die hard Guinness Stout (dark beer) fan. I do like to try craft beers if I go to someplace like the Beermarket for dinner but usually end up back with the Guinness. I searched online today and found a non alcohol beer provider who has a warehouse in my home town of all places. I've ordered a mixed box of 24 different non alcohol beer from around the world to try out, as well as a couple of de-alcholized wines. (I'm not holding out much hope for them, as they've always tasted like sparkling grape juice or just crappy all together). I'm going to wait a few more days to try anything until my taste buds show up from their hiatus.
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Lisa1967- my MO told me there was a 87% success rate. I have thin hair and was worried that it would thin and be next to nothing. But I actually think my thin hair has worked in my favor since there isn't much better the caps and my scalp. I do have strands that come out in my hairbrush but have to say, nothing noticeable.
I was also told that if they weren't going to work, you would lose your hair the first round- usually around day 17-21.
I hope it works for you! I got a wig as a back up. I just went to a local wig place and tried on a bunch. I brought my husband with me. Found one that was pretty good and bought it. My insurance covered the cost but I hear if your insurance doesn't, there is a breast cancer organization that will pay for it.
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kateB79- I have continued with free weights at the gym. I just make sure that I wash my hands frequently and keep them off my face. I haven't had any problems thus far. I am not able to train like I used to but it feels so good to lift. I life feeling the soreness of my body the days after my workouts. It makes me feel sort of in control of my body. To feel the good pain. It is an emotional and mental release for me....empowering
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I bought my silicone foobs and two bras at Nordstrom today, all covered by insurance. The foobs were $650 for the pair...crazy! For anyone who's no-recon and is interested in what I bought, here you go:
https://www.amoena.com/Products/Breast-Forms/Natur...
http://shop.nordstrom.com/s/wacoal-halo-lace-conve...
http://shop.nordstrom.com/s/natori-hidden-glamour-...
Someone at Nordstrom will sew pockets into the bras so I can slip in the breast forms. Now I have the option of wearing all of my low-cut tops and dresses.
Lisa1967, nice to meet you! I went to a local wig store on the recommendation of a friend who's had cancer. I originally planned on buying a fancy-schmancy human hair version, but I ended up with a $350 artificial hair wig (completely reimbursed by my insurance company) that looks perfectly fine for the year or so I'll likely need it. As it turns out, I don't even wear it. I either go bald (I'm completely shaved), or I wear a turban or cap. You mentioned you don't like wearing hats--maybe you can try something like this: http://www.headcovers.com/tiffany-turban/ I have three of them and they're comfortable & cute.
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I can't believe how expensive everything is in USA.
You're spending hundreds of dollars on prostheses. In the UK, we just knit them!
www.knittedknockers.org
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mama bear - I'm on TC, and for sessions 1 and 2 I had sore eardrums, a swollen lymph node on my head, pustules on my adenoids, and a sore throat. Both times I gargled with the salt water solution, and after getting my Neupogen shots, I was fine. The NP said that this is the side effect that my body must do, and we're going to anticipate it and do the Neupogen shots earlier.
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does anyone know the difference between dose dense TCH every 3 weeks vs weekly taxol?
Is the side effect better on weekly taxol? how many days do you feel down on weekly taxol herceptin
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Alice12 I can answer your question. Have been on weekly Taxol and 3-weekly Herceptin since 5th August, so I'm half way through my 12 taxols. If the taxol comes on day 1 (and day 8 etc), I feel bad only on day 3 (but not THAT bad). I work from home and have been working throughout. I've only had one very mild scare with low white count, but my oncologist wasn't worried. It's WAY easier than dose dense anything.
The Herceptin gives you a sore leg for a day and you feel tired for about three days, but again it's OK. I went out to dinner feeling like that, though I didn't want to drive.
BUT I'm pretty fit and I think I'm getting fewer wide effects than some people on the same regimen. My friend had simlar four years ago and said the Herceptin made her feel horrible. I walk 6 miles every day, and I think that clears the crap out of your system. Even thgouh I am very tired all morning after it!
Hope this helps!
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I am thinking to ask my oncologist to switch to weekly taxol , and just wonder how the SE compared to dose dense TCH, which has been difficult for me.
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Does anyone know if delaying chemo has any effect on recurrence? The first round after looking at my incision that was the tiniest bit away from being closed and shut, she said we don't want to delay we only have a small window to get this done... so we did it. I had already been delayed 3 weeks when the incision infection was discovered. Now I am a late processor so I didn't say anything.... So now tomorrow I am supposed to have round 2, but today I woke up with a giant wet spot on my shirt. The incision has gone rogue and its draining a lot and its brownish and the hole that looked closed to me every time I looked at it was only a facade because the opening is now a lot bigger... it does not hurt or anything but it ain't right. So I am really expecting to be sent home tomorrow and now that muttered sentence she said is forward in my mind...
Or will she put me on antibiotics? Will she really expect it to be open till Feb (Dec is last chemo, so a month after that maybe it can begin to heal???) and not get infected??? I will know for sure tomorrow but I want to know now lol... now now now... Google is useless. Thanks for any info... 0 -
So, nervous about tomorrow's infusion, but distracted myself with the inevitable:
It was coming out in small tufts in the shower and throughout the day, so I figured I'd get it done now before the next treatment just in case I have a bad reaction again (which hopefully I won't!). My DH, mom, brother-in-law, friend, cousins, and sister were all in attendance as my sister, who has always cut my hair, did the honors. I really like it, as it happens, and basically look the same as my baby pictures! I may keep it....
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gooseberry you and I have almost exactly the same diagnosis and treatment. My onco told me I could delay as long as needed, we are all different in our reactions and healing. I don't know the statistics of a delay, but if our bodies can't do it, we don't have a choice. I'm moving forward with a lower dose, and was told that was ok too. it sounds like your incision needs to heal up for you to go to the next phase.
Bunnybumps you look great.
My 2nd infusion is scheduled for Tuesday. I'm both dreading the side effects and just want to get it done. Whew.
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Gooseberry I too am in a similar group. My onco told me if you're Herceptin sensitive then it's really the Herceptin that does the curing. The chemo is just to shake you up to make the Herceptin work. I agree with RavenSally that you (we!) don't have a choice but I also agree that in the scheme of things this delay isn't going to make any difference. I was falling over myself to get my mastectomy but when it was delayed a week the world didn't end, it was just my psychology wanting the cancer gone!
Also agree Google is useless. You're nearly there, stay strong and positive!
And Bunnybumps you look AMAZING!!
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@Vickirides, your camping head-shaving pictures are priceless and beautiful. Thank you for sharing them and also for your big FU to cancer. Don't let it take anything away! (Well we have to let it take our hair I guess, but we will grow that back, lol.)
@RavenSally, I'm so happy to hear that your MO changed you over to a less dose-dense regimen. As I've read about everyone's struggles with side effects for days from having chemo every three weeks, I've been very glad (and honestly feel a little guilty) that I'm getting smaller, weekly infusions. I go 90 miles for this treatment, but it's worth it.
That being said, I'm not without side effects. Mainly digestive problems, usually only lasting one day. Like MsBrompton, who is also doing weekly smaller doses, I'm having that one "bad day" either two or three days after my infusions. Today was the day for me this week - last week I managed to avoid it entirely. Also, it seems that the constipation and nausea are kind of companions - I find that when I feel most nauseous turns out to be when I'm constipated, and when that goes away, the nausea goes away too. So I'm taking senokot tablets (one when I go to sleep, I started with 1/2 a tablet but then I looked at the directions and they said that was the dose for kids under 6, so I figured I ought to be able to handle a whole tablet, ha ha). I've been having smoothies with fiber too, but honestly this morning I had a smoothie and by this afternoon I'd lost it, and that was a very unpleasant experience!
I met with a nutritionist/naturopath at my MO's office this last infusion day. Very interesting. She's done lab research (real, university lab research) on turkey tail mushroom capsules and herceptin. Apparently some evidence shows that some turkey tail mushroom capsules make herceptin more effective. I'm cautious about taking them, because she gave me strict instructions not to take them within two hours of eating, which makes me suspect they cause nausea. Grand.
She also had me cut way back on supplements. Since my diagnosis I've been taking everything that I've been able to find information on that is supposed to be cancer-fighting. Well, she said all anti-oxidants are out while I'm getting chemo, because they protect all cells, not just healthy ones. Makes sense to me. I'm limited to vitamin b complex, magnesium, melatonin (doubled to 20mg/night) and my prescription meds. (Which, by the way, are for anxiety, and I'd be happy to talk via direct message with anyone who is having anxiety problems and wants to know what I'm taking so you can ask your doctor.) She took me off fish oil, resveratrol, holy basil, and a few other things. But I've kept my prescription meds, thank heavens.
Speaking of prescription meds ... I know some of you are using Ativan, so I've wanted to say this for a while but I've hesitated, because I don't want anyone to feel like their choices are being questioned. I'll just relay my personal experience: My mom, was given Ativan for anxiety in her mid-70s, for approximately two weeks. It certainly worked, her severe anxiety attacks just melted away as soon as she took one, but subsequent to that she was not the same mentally, and she has never recovered her former self. She already had a mild form of memory loss, but the Ativan worsened it significantly. I later found out that Ativan is often avoided in people with mild memory loss for exactly that reason. In my opinion, it should not be taken regularly by anyone over 50, or used for more than a week. Just had to say that.
I had a bit of a tough time after this last treatment, emotionally speaking. The two fabulous young women who are in my infusion group were having bad days, slept through most of their infusion time, and overall seemed less vibrant and healthy than the last few times I've seen them. It made me sad, because their cases are worse than mine. I talked with my husband, a survivor himself, and he said he went through that too - knowing people who were getting treated at the same time as he was, had worse cases, and in some instances didn't make it. Very sobering and saddening, especially as these women are much younger than me. They are people of faith and have confidence, which has been giving me more confidence. Seeing them so debilitated, even for a day, was very hard.
On the upside I had visits from two friends during my infusion, and that was really nice. It is good to have support from friends.
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Oh one more thing - my WBC count went down,so I too am giving myself shots to bring it back up. Leukine, I believe it's called. So now I am giving myself four jabs per week, not just three. And I used to be needle-phobic! Ha!
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@Bunnybumps, love the hair, but more, the twinkle in the eye, and the mischief in the grin.
@mom2aboy I hope you got it back! I agree that the blech feeling goes right along with the constipation. I think dose is dependant on the tablet and weight? I was prescribed 1 8.6g tablet twice a day as needed (it says take it with plenty of water and we know the challenges when water tastes like it came from the swamp. This last round I took it on the night of chemo and still suffered for a day or so, next time I'm going to start it in conjunction with the dex on the day before.
@RavenSally, glad to see you back, and sending you a packet of cyberstrength to open as needed.
To all having infusions today, peace..........
I'm feeling pretty close to normal today, and I'm just about to launch my road trip to see my Granny! I'm very excited to see her, catch up, and let her see she can stop worrying. Later Gaters.
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Ladies my neutrophil count is at 0.6 with my first infusion. I'm really concerned since it only took one dose to drop me so low. My biggest fear is getting bone morrow complications.
Mother2ABoy: what is your wbc or neutrophil count? Was it that low after 1st infusion? Do they want to lower your dose?
Thanks
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motherofmany - My WBC dropped to 1 on my infusion, and other on here said the dropped to .3. I started to get a little weepy worrying, and everyone assured me that they went right back up after the nulasta or neupogen. Sure enough, I was up to 12 after the 3 neupogen shots (then stettled at 7 around the next chemo). Give your MO time to figure out how you will respond. Everyone is different. Good luck!
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mom2boy- I take Turkey Tail (FDA approved for breast cancer), but I'm not her+. I also take lglutamine for neuropathy. I'm not big on supplements but felt these two would be beneficial to me along with a plant-based Mediterranean diet with olive oil. Honestly, I don't miss meat at all. If chemo is going to turn your stomach at something, it might as well be toward less meat!
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motherofmany my neutrophils dropped to .05 with the first dose. I was in the hospital with a neutropenic fever, but I responded immediately to nupogen and will get it now with every infusion.
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Hi All!
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks Everybody!
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Bunnybumps - You look great. What a perfect head.
What type of razor are you ladies using to shave your heads? For some reason I am nervous about using a normal, leg shaving razor. I was thinking of trying my husband's electric shaver. Will I destroy it? The prickly hairs left by my clippers don't really bother me, but they are starting to fall out in some areas and I don't want to look all patchy.
I've been wearing caps when I go out, but it was just a little too hot this weekend. I went to the Verizon store and Home Depot uncovered and I didn't feel like anyone was staring.
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how many days do you usually feel weak after the chemo before you recover
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Hi @alice12, I think it depends on what type of regimen you're following. For me I'm actually fine the day of chemo infusions and usually the day after, then the third or fourth day I feel lousy and just want to sleep. The next day I'm back up again though. I think the experience is different for everyone. Curiously I'm not sure I'd call the feeling when I'm having a bad day "weak" necessarily, just a bit worn out by the end of the day. Have you started your treatments yet? I know I was anticipating a much worse experience than it actually turned out to be. Wishing you well.
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@motherofmany, my WBC count on last week's test was 3.5, just below the normal threshold of 3.8, with absolute neutrophils at 1782 (low end of normal, but within it). All of my other numbers are also down (RBC, hematocrit, and hemoglobin) but just to below the bottom of normal. I'm hoping the Leukine will bring them all back up to within normal range or higher in the normal range. If not on the first shot, then surely on the second shot.
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alice12 I've had similar experience to mom2aboy - fairly good for two days after the chemo then one horrible day (day 3), then oK for the rest of the week. I'm never 100% but the only day I know my body and brain are going to be 'not working' is day 3.
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alice12 I've only had two treatments of AC but with both I felt crappy (nausea/super tired) the evening of and the following two days. From day four to six I'm still tired but up and about. Both times on day 7 i was feeling good and confident to drive.
The Neupogen shots i am on havent give me any major side effects aside from weird arm tingles that have since gone away.
bunnybumps nice noggin! Welcome to the baldie club!
Everyone else hope you guys are doing ok. My treatments are every three weeks so I get two weeks "off".
I haven't had a period since right before my first chemo (early August). Wondering if my egg makers are shut off already? Wouldn't be the worst thing in the world. H and I were on the fence with having a 3rd child, and after meeting with he fertility specialist (after discovering I needed chemo) it sort of sealed the deal with our decision. We could have harvested embryos but I wouldn't have been able to implant until after the five year stint of oral drugs and my oldest would be 10 or 11!
Currently de-babyfying the house. Selling/donating things we were sort of keeping around if we had decided to have another kid ... Cleaning house and making some extra money. Not a bad thing!
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alice12, so much of it is unique to the individual. I'm on TCHP, and I find that I feel okay on infusion day, kind of okay the next day, and pretty strange for the next two days, as I come down off the steroids and deal with the digestive distress that the regimen causes me. My peak time for overall crappiness is between days 5-8, after which I turn the corner. The good news is that, once I turn that corner, I feel almost 100% (minus low-grade fatigue and a sour stomach, which are both manageable) until the next infusion. I'm through two rounds, and it's been consistent for each one.
Mom2aboy and sloan15, I read about Turkey Tail this afternoon (on your recommendation!) and just put a call in to my MO about it. It looks really, really promising. From the HER2+ perspective, anything that makes Herceptin work better is a win in my book. I used to use medicinal mushrooms all the time; from what I can tell, they don't interfere with chemo in quite the way some other supplements can, so I'm hopeful that she'll give me the green light. I asked about CoQ10, too. She doesn't want me taking antioxidants, but CoQ10 isn't an antioxidant in the true sense of the word, so maybe I'll add that back in to my regimen. I, too, quit taking many supplements (green powders, antioxidants, basically everything except my multi, B's, aloe vera, and probiotics) right before chemo. . . . I'm not even supposed to drink green tea! Switched to black tea, which is okay, but it's nice to have a cuppa now and again.
Mom2aboy, I hear what you're saying about Ativan. I've only taken it a handful of times—and only at night while I'm on steroids. It really takes the decadron edge off, and for that I'm grateful. But I agree that there are better options for long-term use; I knew someone once who became addicted to it (and, subsequently, to Xanax), and watching her come off of it was enough to give me pause when I swallowed the first one. Thanks for the heads-up.
Bunnybumps, you look fabulous!
My hemoglobin is low, too. . . . We'll see what they decide to do about that. I'm told anemia is a very common side effect on TC.
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thank you all for the input. I guess we cannot get rid of feeling crappy with the chemo.
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