Starting Chemo April 2016
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kat I hope evrything id ok, let us know
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Well yesterday was Day 3 on Taxol for me and while I was fine in the morning I did have a bit of a crash yesterday evening. I had to go to bed with little or no energy, a bit like the symptoms of AC but nothing as severe. I took an anti nausea just because I thought it might help. I had a very minor ache behind my left knee, which I have never had before, but nothing that would warrant a pain killer. Today, I feel a bit better, slightly nauseous but can do without an anti nausea. Just wondering if these would be considered the down days on Taxol and do you come up after a couple of days like this ? I sure hope so as I would like to feel a bit more normal than this before my next round next Friday.
Hope everyone is having good days this weekend.
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Houston - hope all is well. AC kept my skin looking amazing, but like everything, we all react differently.
Numb - I did the Bubble Run yesterday and my right knee (which has arthritis) was really sore. It never got that sore with AC. It's a lot better today. Taxol is known to give aches and pains. But, what you described - that's about as bad as it has gotten for me on Taxol. It's so much better. My eating is in control and I'm not on an emotional roller coaster. Hope it's the same for you moving forward.
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Houston - I know Taxotere can affect finger and toe nails, but I'm not sure about the rest. Light passes through your nails to the nail bed, which is live tissue, like a window. The nail bed with taxotere swirling gets unhappy, discolored and the nail itself is weakened. Some people paint their nails black, like window shades. I've just been wearing a pair of white gloves for the first week to keep them covered and that has worked for me. Nails look fine. Socks and gymmies work for my toenails.
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Hello everyone, I just bought a bag ofEpsom salt yesterday and it stated can help with aches and pain. Hmm, I wonder if I can use this later with Taxol. Anyone have any experience with this?
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CJSHARMA - That's great CJ, I am much improved today, so hoping that yesterday evening was my bad day and that I am finished with bad days now for this week. One bad day a week would be bearable. I went for a walk today, no bother and my leg is free of pain. So onwards and upwards.
HOUSTON2016 - So far no heart pressure on Taxol and this is Day 4 for me.
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Houston2016- I bought Epson salt too for the same reason. I haven't used it yet but I'll let you know. I plan on taking some baths with the Epson salt this next round to hopefully lessen that horrific bone pain I got last time. Let us know if you can tell a difference.
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just want to pipe in on what seems to be working for me:
1) tree tea oil for the nails to make it stronger, the black spots would be there but not a lot
2) coconut water with water mixed for hydration. I mix it because I want less sweetness
3) walking even if sore. I find that once I indulge myself in a couch/bed time, I can sleep all day
4) walking early and talking loud to release anxiety. Make sure there is no one around otherwise they might think there is something going on there:)
5) pray, hope and don't worry. Easier said and I try to remind myself, this is beyond me. Need to do my share of work and total submission. It's. A work in progress.
What do you do for scalp and hair care?
We are all struggling and can't wait to put this behind us. We can only live a day at a time - so they say. God is good all the time
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Happy Hump Day All! How about a day where we post one thing we are doing to make this stupid cancer thing a more positive experience....
I just signed up for a 10k on August 6th. I'm done with chemo July 7th, and have surgery the week of August 15th, so I figured this will give me something to train for to gain strength and fitness before I undergo surgery. It's a bit of a drive, but that's okay. It'll be fun.
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CJCHARMA - You are always so positive and it is great that you are getting through your treatment so well. You have great energy and I reckon your fitness will stand to you for your surgery. It will be great when all of this is over. Are you getting a reconstruction at the same time, or is that how it is done ?
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I should be posting something positive, but just want to ask did anyone have trouble getting a needle inserted into their port for the first time. Just wondered because I took the bandage off my port yesterday and the skin around it is very raw, like some skin has been lifted with the antibacterial stuff they used for the operation. It is very stingy. I can't bear to think of a needle going through this on Friday. Any tips for getting it to heal in 2 days ?
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Jlb2016- it sounds kind of silly, but I am just washing and conditioning my scalp as if I actually had hair. I'm using the same shampoo/conditioner. I tried switching to baby shampoo, but got a whopping case of folliculitis (which was taken care of promptly with an antibiotic lotion). I'm pretty sure that there is no causal relationship between the baby shampoo and folliculitis, but I am doing fine now with my regular Aveeno.
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I don't know if this has made the whole cancer thing more positive or not, but my "eye on the prize" for getting through chemo has been a trip to Alaska. As a biologist, the last frontier has always held an appeal for me, but I nave never been able to make a trip work out. Before chemo even came up, I finally got the opportunity for a trip to Anchorage, with some time at the end for goofing around. Big kudos to my MO for making my chemo schedule fit with my proposedtravel schedule!!
Probably not as good-for-you as running a 10K, but I'm looking forward to it. And I'm leaving on Sunday!
Now if food would just taste less like sawdust.....
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so this may be a silly question but once my hair is gone how or what do I was my scalp with?
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Hi ladies, I'm resting this week in preparation for my Taxol tomorrow. I finally felt less of the chest or heart pain from AC. I'm sure I won't have the same SE with Taxol but I'm just not sure how it will fare out once a week. My OC said I still have steroid pre-infusion with Taxol and Benadryl. But I'm opting out of steroid this time Decadron can have bad long term SE. For me the less drug the better. Oh, IDK why but I'm having small cough this week last week of AC. Do anyone have any thoughts on this? Thanks.
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Numb - the needle for the infusion is quite small (at least for me). They put a small bandaid (plaster?) on it when they're done, but I can't even see a mark when I take it off.
Heather - I don't use anything except hot water on my scalp. Seems fine. No one has complained.
Houston - small cough? Maybe more A/C in this heat? Is it dry in your house/apt? Also, many of us have a runny nose; that can cause it too.
I went to see my MO today. She thinks my passing out last week was probably a combination of accumulating weakness from chemo and low blood pressure. But there is nothing we can do about it, so I'm just going to have to keep waking my husband up in the night after each infusion. I jwonder when my ankle is going to heal. She's going to send me for some physical therapy, but not until the bruising goes down.
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Hello everyone. It has been a while since I've posted but I've been following on here and on the Facebook group.
My mom finished her last AC (4/4) on June 8th. I was afraid of round 3 but my mom actually breezed through it. #4 is a little bit of a different story... my mom's mood definitely is different. She does not seem as cheerful and motivated as she was prior. She just seems really down. She had a few days where she felt queasy to her stomach but no vomiting. It is now day 7 since her 4th one and I'm hoping she starts feeling back to her normal self soon.
My mom has been diligent with her mouth care and I stocked her up with every Biotene product possible. BUT she now think she's starting to get a cold sore on her lip... she never had cold sores before. Has anyone experienced this?
Next up her 1st Taxol on June 22nd. I am praying Taxol is easy on her. I keep hearing that 95% of patient's agree it's easier than AC but what about the patient's who found Ac relatively easy? does that mean Taxol is now going to kick their butt? I'm worried about the possible neuropathy and severe joint pains. I guess Taxol is a whole new journey
The oncologist is very happy with her progress and she is a "poster patient" lol. 4 more to go... I am just so ready for this to be over for my mom
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Numb - I will that tissue expanders put in under my chest muscles. They will fill those every few weeks until they are where I want them to be. Then eventually we'll swap out fo impants. I usually don't need anything to numb my port, but they do have numbing agents. Definitely request if you are nervous. Once you're "plugged" you'll be fine - kind of like getting a blood test - it's the prick of the needle that hurts, but once it's in it's fine.
JLB/Heathnet - I have a sea salt shampoo from Lush that I'm using on my scalp. It makes it feel more invigorated and I'm kidding myself that it's helping me grow hair faster. *shrugs* Hey, it makes me feel better.
Limno - that's awesome! i would love a trip to Alaska. My daughter is a Wild Life Biologist, and I majored in biology. So, I get the desire to explore that last frontier. I'd love to hear more about what you do in biology.
Houston - good luck with Taxol. I get the steroid with the infusion but don't take anything after. I get a bit tired and a bit achey, but it's no where near as with AC. Hope it's the same with you!
WeRwarriors - hope your mom handles Taxol like I am. Hugs to you!
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weRwarrios - I got a cold sore thing on my the corner of my mouth and tried a couple things. Abreva seemed to work best for me. It's expensive ($20 tube), but it was effective for me.
JLB/Heathnet - I was told to just use the same soap I use to wash my face, but to switch to a more creamy, moisturizing soap rather than something exfoliating or citrusy. I also slather some cetaphil lotion (with sunblock in it) on my face and scalp after I shower.
CJ - positive thing for me is really reducing the amount of processed foods and artificial sweeteners, etc. as well as being more mindful of eating real, whole foods. Maybe not organic all the time, but at least pesticide free when possible. Oh yeah, - and a trip to Hawaii in October once I'm done with chemo (except Herceptin) and radiation!d
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Help! I'm severely bunged up with constipation! I've never had this in my life, and it's horrible.
Both my MMM Chemo and the anti-nausea Ondansetron I got on Monday are known constipation triggers, but haven't affected me until this week. I've been using Laxsol, but nothing is "working". I think I'm a bit late to start with the "more fibre, eat prunes". I'm going to rug up against the rain and wind (It's winter in New Zealand) and go for a walk to see if that will help at all, but if not, I think I'll have to head for the hospital to "get things moving"
Any quick tips to help? I'm terrified this will put too much stress on my liver mets.(Not to mention feeling like crap - literally!)
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suems: drink warm lemon water. It really helps get things moving and does not cause gas.
Numb: the port is initially a little sore. You can ask for cold spray the first few times or every time. It does a good job of numbing the site. I have stopped using the cold spray now because I don't really feel the port insertion.
So, I started feeling distinct lumps in my left breast which is not where the primary tumor is. MO thought it might be lymph nodes. Just had official ultrasound today and they are fat lobules. Very relieved. The radiologist said that when you lose a significant amount of weight the breasts can start to feel different. Wish I would have known up front. Have lost 23 pounds, I think a lot of it is muscle because having a hard time working out with chemo, working full time and three small children. Just glad it is not more cancer.
How am I making cancer a more positive experience:
I laugh every day whether or not I feel like it. I am embracing my gorgeous bald head. I am more patient with basically the universe (even a little bit with my absent-minded professor husband). I gave each of my three girls a kitten (don't ask, I am crazy). I am making sure that my children have more fun each day and trying to let go of the small things. I have decided to let go of keeping a clean house. Just a few of the positive things. Have a lovely evening everyone.
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LimnoGal.....Alaska! That is AWESOME. We are doing Yosemite in August. Great goals....no marathons here either but I cut my grass and went on a bike ride with my 6 year old. Are you going by boat? Train? Will you do one of those helicopter land on a glacier trips? I hope you see bears (from a distance). If you can watch the movie The Edge or The Bear to get you in the mood. I hope to see some spectacular photos. Totally hear you on the food taste....my mouth has been shit all week. No sores but metallic chalk is best I can describe and my gut is off (last Taxotere was last week). Do be very careful if going on a cruise. Still lots of hand sanitizer and wipes. Have a wonderful, wonderful time.
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Cj what a great idea. Not sure I would be able to achieve that even without chemo.
Limnogal Alaska sounds like a great idea am sure you will have a fabulous time.
For me the positive thing I am going to do - for myself - cut out artificial sweeteners and eat healthy. I did yoga and exercise even before- haven't had a weight issue but could do with healthier eating. Will go to an Ayurveda retreat at some point after radiation which basically will end sometime in October. Plan to also make sure I travel a lot next year.
I also want to do something positive for others who have cancer. I am originally from India will sponsor treatment for a girl child ( is quite cheap in India relatively speaking) and I want to do something to make the whole chemo experience a lot less scary for people in my country. Am thinking of doing some charity with one of the Cancer hospitals - to make chemo cheat sheets/ awareness for those who don't/ cant access English language sites. Will be one of my next year projects.
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weRwarriors- I agree with PDRChick, Abreva should be helpful for a cold sore. It will help it heal faster.
CJSharma- I have spent 21 of the last 25 years cleaning up hazardous waste sites, either from the health or the environmental side. The last 4 years have been in health informatics. Not exactly where I thought I would go, but overall it has been mostly rewarding and generally fun. How about you?
PDRChick-Hawaii should be an awesome trip. Of course, more mindful eating is laudable, too.
KAT-bet you never thought you would be happy to have fat lobules! That is great news, and losing 23 pounds is excellent. And you are definitely a better woman than me in embracing your baldness. While I have the attitude/moxie for scarves and hats, accepting the baldness is still a struggle.
7 of9- Yosemite should be an excellent trip! I'm doing a couple of day cruises, a flight seeing trip with my brother, and some driving around. I hope I see bears, too, from the safety of the inside of the car! I may do some hiking, but not much off the beaten path. I don't want to be the bear bait!
PositivePower-I work with several folks from India. We have been talking about the differences in diagnoses, care, and how cancer patients are viewed by society between the US and India (or in the US with and without insurance). Kudos to you for turning this mess into something positive!
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CJ I had BMX with tissue expanders on April 15th. Feel free to ask any questions you'd like.
Sue I had terrible constipation as well and relief came from Milk of Magnesia. I took 3T and about 1-2 hours later had a BM but then diarrea for 1-2 hours. Not terrible as I was thankful for the "passing" lol
-keely
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Thanks for the info on the port. I would not mind the needle going into it if the skin wasn't raw over that port. I think I had a reaction to the antibacterial lotion they used when inserting the port and then the plaster over it intensified the effect. Knowing that I can get a numbing lotion is a great relief.
Can't wait to plan a holiday for next year. I won't be finished my treatment until Christmas.
WERWARRIORS - that's great news about your Mom, that she is coping well. She will be fine on the Taxol. AC is much harder. I had mouth trouble when I was using the mouthwash too often at the beginning. I found once a day was enough. Now I don't use it at all and my mouth is perfect. At first I was using it 4 times a day and my mouth was stinging me and I did get a bump inside my lip. I actually think that using the mouthwash too often aggravates the mouth. It certainly did for me. I got a Mycostatin spray to use if I got an infection in my mouth but I never had to use it. It is a mouth antibiotic.
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Suems - what about a glycerine suppository? I keep a supply because just knowing they are near, just-in-case,makes me more relaxed and regular.
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All sorted now. I went to the ER. Suppositories didn't work, but Fleet enema worked like a depth charge - TMI!
I am now in possession of prunes, kiwifruit, Metamucil, etc etc - that will NEVER happen again!
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suems -glad you got sorted out.
CJ Sharma - how is the 2nd round going for you. Any cumulative effects? I got my second round this morning and all worked out well. My port has healed up a good bit so no bother with the needle. It was such a comfort not to have veins prodded over and over again. For five minutes yesterday I couldn't move the little finger on my left hand. I thought it was the start of Neuropathy but then I just kept stretching my fingers and it came back. Just wondered if this will progress with each round ? Exhausted now after the Benadryl this morning and getting up at 5.00 a.m. to be at the hospital at 7.15. so going to bed for a rest. My second round is probably only equivalent to your first round, so you would be on round 4 in my book now.
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ClarkBlue - thank you! I have been talking to Zoziana, but I would love to hear how your experience went, too. I'm all about more information. I'll PM you. Thanks.
SueMS - goodness! I don't get as stopped up as you did, but with Taxol, I can't sleep, so I have a couple of days where I need Ativan, which stops me up. Today was my clearing the tanks day... Oy.
But man, I feel 10 pounds lighter.
Oh Numb - so happy the port worked well! Isn't it nice? I had some more bone pain this time, but honestly it wasn't intolerable. The icing and the Glutemine is helping with my fingers and feet. I recommend it highly. My hands were much better this time. But what you described - I experience things like that. I have more random weirdness happen on Taxol than I did on AC. But, my energy is still high. Enjoy your nap. Thinking of you. Have a fabulous weekend everyone! I loved reading all of your positive stories! Thank you for sharing! It's Father's Day here in the US. Anyone have good plans? As I'm my daughter's mom and dad, she's coming home to celebrate with me. We'll go to the Dancing on the Avenue (it's big street party in my little town - I love this little town!) and we'll probably go see Finding Dory (yeah - she's 23, but we're both Disney/Pixar buffs, so we'll proudly fly our goofy flags).
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