Chemo Starting August 2019
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I start chemo tomorrow. Anxiety up and down.
Some people asked about anti nausea. Obviously I have no idea how successful these will be: started dexamethasone today and will continue for 4 days. I believe I am also prescribed akynzeo for chemo day, but waiting to hear if it got financed. A bit scared of so many drugs ( my 10 yr old laughed that there are side effects to the drugs used for side effects!) - slight stomachs possibly from dexa. Drank ginger tea and feel better
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@sporty glad to hear your day went as well as it could & you got to enjoy lunch ! I hope you are recovering well now
@ezzie while I havent had mouth sores yet, my tounge is feeling very burnt the last day or so, I've been using L-glutamine powder in water and it helps soothe it for hours ! Also my stomach has been feeling similar, I take the L-glutamine as a drink as well. It helps repair the GI tract. Ask your doctor if they think it's okay for ya ! I love it. Have you tried any acupuncture ? It helped so much with my anxiety/depression.
@beastmode I'm right there with ya on the hair stuff ! finally shaved myself "bald" tonight with the help of my mom & the cat who decided to jump in mid shower. I hope the rest of your cold capping goes well !
@flowerkid good luck tomorrow ! I took dex right before chemo and then for 3 days after. I personally think it was overkill for me and compazine every 6 hrs worked super well. I feel like alot of my nausea was from things I thought about, and I felt queasy but never actually about to throw up. Dex is the steroid and it really amped me up. Next round I'm looking to lower my dose, but as you go you will figure out what works best - they all do work really well though.
Alright signing off here friends, you all have a great night !
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Hello everyone! I'm a little late joining this group as I had my first chemo session at the beginning of August (I'm getting TCHP every 3 weeks, my chemo #2 will be Monday). Big learning curve that first cycle, eh?!? I hope everyone is finding ways to help deal with side effects (& that y'all found the posts on here about "how to prepare" and "things to have on hand."
Chemo hasn't been at ALL what I expected, did anyone else feel that way? I haven't had much nausea and have had more energy than I expected (at least, after the first several days), but MAN the stomach pain/ heartburn/ indigestion and diarrhea just shredded me! I had never heard of heartburn being a chemo thing!
@in2earth the L-glutamine was a revelation for me. I didn't discover it until I was into my first cycle and having neuropathy (it stopped it RIGHT away and it never returned!) Now that I know "how" to better take it (empty stomach 1 hr before meals, swish each mouthful before swallowing, instead of with meals as I did my first cycle), I'm hoping to better prevent mouth and gut pain (both of which really bothered me for about 10 days).
Anyway, I'm 43, live in the PNW, triple positive with a large mass spread to "at least several" lymph nodes, so I'm doing 3 months of neoadjuvant chemo BEFORE surgery & radiation.
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Hello! I just wanted to pop onto the thread (hope you don't mind) to send you all some positive thoughts. I was a member of the August 2010 chemo group. The group got me through some very hard times...it was nice to have people to turn to who knew EXACTLY what you were going through because they were going through it too. I know the road ahead is not easy, but be strong and know there is so much more out there for you! You got this! If you are feeling low, seek out the success stories thread and know you are not alone!
Sending hugs
Michelle
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Hi all. I’ve been struggling this week - has first AC on Monday and have had a migraine since then which is triggering nausea, etc. My doc thinks it’s the zofran so they switched me to phenergan today and also said to take an aleve. It seems to have helped but I just can’t stop my mind from thinking about what this is doing to my body and how I’m going to get through chemo. There have been lots of tears this week - partly because I have major PMS and also sent my kids back to school (grade 3 and kindergarten) so I’m sure the combo of everything isn’t helping. Anyways, just needed to vent :-(
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Hey @elc75 oh man back to school blues on top of all this, what a stressful week ! My first AC I said to my mom multiple times "I don't know how I'm going to get through this!" Once I got to Day 5, many of the symptoms were lifting and on my week off from treatment I was feeling back to normal. So please know that you will get through this ! It's such an icky toxic feeling, so try a epsom salt bath or even just a foot bath, keep up with water drinking & always pee when you have to as much as you might not want to move. My 2nd round went so much better & hopefully by then you can figure out which meds will work best for you. hugs
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To all of those wishing to prevent or stop mouth sores this is what I was told by our centre:
1 teaspoon baking soda and 1 teaspoon of salt in 4 cups of water as a mouth wash to keep things clean. Swish in your mouth several times a day and keep on brushing.
It’s only been two days for me but my friend whom I met through this board and is doing TC every three weeks,has a bottle of this and uses it throughout the day. She is into her third cycle and has not had any mouth sores.
Hope this helps if you are finding it a problem!
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HeartShapedBox: I too am having a learning curve from my first chemo. It somehow feels surreal sometimes but then again this whole journey feels surreal. Like you also I had lymph nodes affected. I still don’t know if I am getting the rest of my axillary lymph nodes out yet. Good luck with your Neoadjuvant chemo!
In2earth: Thanks fir your advice and your positive attitude. I still find myself worrying if this going to work and I think that is still where must if my anxiety lies.
Elc75: Know that you are not alone in your tears and wondering about the meds racing through us. I also understand the sadness you are feeling and having to send your kids to school as that can be so hard. Hopefully you will take the time when they are at school to take time for yourself and re-energize if needed.
Quick question. Has anyone had a seroma firm close to or under their surgical site and now has skin puckering? I am wondering if the skin issues are normal
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elc75- I'm so sorry you're in the rough of it- it may not feel like it right now, but it will get better! You won't always feel like this. Keep drinking lots and lots of water to flush the chemo out. My onc prescribed 3 drugs for nausea but zofran was supposed to be my "last resort" option- for me, compazine made me sleepy and spacey, but it worked if I took it at the first sign of upset. There are MANY alternatives, I hope you find something that works better for you!
@ sportymom- that homemade mouthwash (used frequently during the day) definitely helped me. I never got actual sores, just sensitivity and pain, it could've been worse!
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Flowerkid - Good luck on your chemo
HeartshapedBox - I am also a triple positive! I heard that Projeta can cause a lot of diarrhea. I escaped Projeta am only on Herceptin with my chemo and haven't had it nearly as bad, but my MO said P can cause bad diarrhea. Hopefully you have all the antacids and imodium.
elc75 - I'm so sorry your'e having a rough week. I've also had a few meltdowns, worrying about how I'm going to do this 5 more times. I have two small boys (PreK & 2nd Grader) and it's been especially hard on me knowing I'm not doing my normal routines with them. My husband has been great, but I feel like I'm failing everywhere. Hopefully you feel better today.
Sportymom - I did and am still doing the baking soda salt swish multiple times a day, and I haven't had any sores. It doesn't take care of the burnt tongue feeling, but at least my mouth is safe from sores. I had a seroma form at my node incision. It took a good month to go away. But I didn't notice any skin puckering. It was just very swollen feeling.
in2earth - No one as mentioned the L-Glutamine to me. What is the dosage, etc?
I'm finally feeling better day 9! The neulasta just killed me, even with the Claritin and Tylenol. After suffering for days, I called my cancer center and they gave me the go ahead to try Aleve instead of Tylenol, and that helped quite a bit. I've heard that some people are allowed to double Claritin too, so I might ask my MO next round. I'm still taking the anti-nausea meds a week later. Whenever I miss a dose by even a couple hours I feel so sick. So I guess I'm in it for the long haul with those meds. But I will say they help manage what would otherwise probably be bad diarrhea.
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Hey @autumngal !
I've just been putting like a tbsp full of it in coffee cup and rinsing whenever my tounge feels funny or after I brush/floss my teeth. On the label of the jar it says one tbsp after working out which is 5g & I drink that much a day and sometimes 3x a day. It doesnt taste like anything ! I got mine at whole foods
I mix it with the baking soda and stuff as well.0 -
Hi Everyone I'm from the Starting Chemo April 2019 group and I want to pass on a tip that helped me tremendously with the anxiety of losing my hair. From this community I came across a reference to halo wigs. I had never heard of them and I have learned through all this that almost no one has heard of them so I've made it my mission to spread the word. A halo wig is a partial wig meant to be worn under hats or scarves. There is a company in Tampa, FL called Chemo Diva (www.chemodiva.com) who makes halo wigs FROM YOUR HAIR! As long as your hair is 7 inches in length you can get one and mine was covered under insurance. I knew somehow I would get through this and knowing this was available took my stress level WAY down. I hope this can help you!
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Everyone reacts differently. I had no problems with the steroids, in fact, I think I slept better after infusions. I took Claritin and never had the bone pain with Neulasta.
I gargled with the baking powder/salt solution at least four times a day and still got mouth sores after each infusion of AC.
I started on L-glutamine 15mg twice a day. (My jar says the normal dose is 5mg daily.) I also am taking Vitamin B complex. Each infusion for taxotere and then taxol, I've iced my hands/feet and mouth. Still have neuropathy! Go figure.
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Hi all!
Treatment 2 of TC is tomorrow for me! My head is still full of hair 20 days out thanks to cold capping, but some of my hair did finally start to fall out. My sideburn area is losing the most, I think because the cap doesn't press as well there. Overall I'm shedding a lot but not in clumps and it is not noticeable. It is hard to not purposely pull out the loose hairs!
So far so good on the cold capping!!
My hands and feet are also great- no neuropathy at all. I'll be freezing those suckers again tomorrow!
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ILOVEVERMONT- thanks, this is helpful!
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Ezzie, I had mouth sores. They called in a prescription for what I see called Magic Mouthwash. Swish and swallow 4x a day for a week. Two days and the sore was gone. Don't wait, call the MO and get it taken care of! I wish I'd called day one, instead of waiting another day to see how it went.
I had my first chemo 2 Wednesdays ago. I was hit with fatigue that Saturday and Sunday, it was so awful I spent most of the weekend in the recliner. I did the bare minimum. I also had leg and foot pain, scalp pain, the ongoing sour stomach. The steroid insomnia!! I had a terrible time getting the MO phone staff to return my calls, so I made an appointment to meet with the oncology PA tomorrow morning. I'm going in with a list of SEs and questions. I want to eliminate any I can, especially the insomnia and fatigue.
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satntabarbar, I read another one of your posts that mentioned fasting. My first infusion was last Friday (23rd,THCP) and have done pretty well. I talked to my dietician and did 500 cal, day before, day of and day after infusion, plus glutamine and had zero GI issues. Thank you! I hadn’t heard about fasting or glutamine until you, and I’m not sure my doctors would have mentioned it if I hadn’t of asked.
Do you have any tips for mouth pain? I have been rinsing with baking soda and salt at least four times a day but the pain keeps getting worse.
Thank you everyone!
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Thank you all for your kind words of encouragement. I started to feel much better over the weekend and am looking forward to my “off” week. I’ve find it helps to break my treatment down into little parts as opposed to thinking about the whole thing - when I do that I get major anxiety and depression. So for now it’s just about the AC. One down and three to go. That seems more manageable to me.
Hope everyone has a good week and gets through it with minimal SE’s.
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Magic mouthwash, not sure how much it is helping . But simple sore throat lozenges help.
Chemo was Friday. So far mostly tired. Worked two hours today. Napped about 3! Slight neorupathy. Will try better with cold packs next time . By the time I got to taxotere in my Rx, the frozen ice paks were not so frozen . One slight bout diarrhea, followed the immodium instructions and Gatorade and nipped it in the bud.
Good to have support here, I have plenty of moments of reminding myself I am strong. Can't believe this is only the beginning.
I did go for a good walk in the light rain today with a friend. I have it in my head that I have to move every day.
Thanks everyone for support!
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Hi Shellgirl -- I'm so glad it was helpful! Thanks for letting me know. Yay!
Re L Glutamine discussion: I was told to take 750 milligrams of L Glutamine..... but only for 3 days. per cycle: the day before chemo, the day of chemo and the day after chemo. This was recommended by an Integrative MO. Jarrow has a one capsule @ 750mg formulation.
I do want to mention that every kind of cancer is unique and in some cases certain recommendations might be sub-type specific.... if a compound is estrogenic or androgenic, that might be important to know, for example. (My cancer was AR+ so I was cautioned about DHEA-- recommended by some people-- as it is also precursor to androgen in the body.) Usually it's a good policy to find out how any given supplement might effect your particular cancer just in case there is a contraindication.
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Shelligirl, please call your MO about mouth pain. I was trying to just cope with baking soda rinses, but the prescription helped so much in just two days. I hope you're feeling better.
Meanwhile, I'm a day shy of two weeks since chemo #1, and yesterday my hair started thinning like mad. When I was shampooing, my hands came away covered in hair. The same today. I'm hoping that since it isn't coming out in clumps, I may just get away with thinning. That probably jinxed me right there. I'm afraid to even touch my head, because every time I do, I find at least three or four hairs stuck to my hand.
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Well, I’m 2 weeks out now from my first infusion and my hair is shedding a little. It isn’t clumps per se, more like a few hairs any time I run my hand through it. It reminds me of post pregnancy shedding. I’m going to try to deal with it through the weekend and then maybe cut it all off. We’ll see how it goes
Other than that, and taste issues I feel really great this week. I’m still scared to do it all again next week. Considering it’s cumulative, I worry new side effects will show up.
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I’m 9 days out off my first AC i feel pretty normal except 2 days ago i had fever 38.1 I felt little chill so I measured my temp. Which was high so i went to the ER and it took me 8 hours of waiting and testing to finally they gave me antibiotics for 1 week please be aware of your temperature because I didn’t fe i am having fever
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Autumn, the 'cumulative' part did not hit me till #5, when I did not "bounce back" as I had the first 4 times. 5, 6, and the recovery agfter 6 I was really tired anemic and breathless walking 20 yards. (I recall putting my head down on the counter while they rang me up at the pet store buying catfood.)
I was worried about worse constipation, worse food aversion and metal mouth, more queasiness. But my infusion SEs if anything got better, as I got better at the timing of my fast and found come good complimentary practices. So you are likely to have about what you had or better if you manage it better, until the blood SEs get intense, and then it's mostly a lot of binge-watching tv and sleeping, which is not that bad!
edited: we got the same chemo only no herceptin for me
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Hey everyone,
Just did my third AC! Just one more left after this thank goodness! I'm already tired and ready to lay down, but this round was the best over all for my anxiety. So far no real SE with the other two treatments past day 2/3. I can expect a nightsweat tonight that's for sure. I always really dislike water after treatment but going to try my best to finish my bottle before bed! Hope everyone is well
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in2earth: So happy to hear that you are on your 3rd AC and tolerating as well as possible.
I love water but by the 3rd infusion, hated to drink it as it tasted weird. Try other beverages as well as water to get your fluids in. I did Fresca, Gatorade, Crystal Light, mixed fresh lemon/limes in water, etc. Get creative. Your taste buds might change every few days so what works today might not in a few days. Hang in there!
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Wegman's sells a carbonated lemonade that has tasted pretty good to me when water began tasting metallic. Sometimes I water it down a bit, literally. I've also had luck some days by putting a frozen strawberry in my water; the little bit of added flavor helped. And in the first week after treatment I tried to have a fruit/yogurt/juice smoothie every day, either midmorning or midafternoon, for the liquid and nutrients.
Two weeks and a day after my first treatment, a lot of food and drink still tastes metallic. And my hair is shedding like mad.
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I've been having some success with Biotene toothpaste and Biotene mouth wash, and I'm also cleaning my toothbrush daily with ultraviolet light. For my first chemo, I did the baking soda/salt rinse they suggested, but it immediately made my entire mouth feel burnt. This time, I'm just going to do Biotene until I have something more concretely wrong. Right now, I have a light burnt feeling on my tongue, but not as bad as I had for TC #1.
My hair shed is still not too bad. I am two days past CT#2 and most of my hair is still here. It is coming out a bit if I take a shower or run my hands through it, and my sideburns are looking more bare on the left side, but so far, so good. We'll know in a month or two if the cold capping is really worth the cost and effort or not, but for now, I'm really happy with the results!
I also am happy to have no hand or foot neuropathy. I faithfully froze my hands and feet for treatment and I'm glad that the pain wasn't for nothing!
Half-way done chemo!
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@AutumnGal- nice to know there's another triple positive sister on a similar chemo! The perjeta diarrhea was AWFUL, but im finding a balance with immodium this round. And doubling up on antacids helped my terrible heartburn pain- i take a prilosec in the AM and and a pepcid AC in the evening. I am doing 10g of pure glutamine powder ("naked" brand) 3x a day, which is supposed to protect the entire GI tract as well as protect nerves from neuropathy. But the trick is taking it about an hour BEFORE eating, and swish each mouthful around before swallowing (so far I don't have ANY mouth pain at day 4, unlike my last cycle). Like you I had AWFUL pain from the neulasta, despite the claritin, my worst SE in fact. My MO prescribed a secondary antihistamine that I take at night (hydroxyzine) which REALLY knocks me out and makes me super woozy the next day, but so far no pain.... Days 5-9 were the worst for me last time, so we shall see...
And FYI I am also super nervous about the cumulative SEs (and my MO is only giving me 4 neoadjuvant cycles not 6 because he feels 5 & 6 is where that shows up) but so far my second cycle (at "maintenance doses" not "loading doses", and with better prevention prep meds) has been easier for me not worse!
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Brand new here, this is my first post. I am doing AC x4, followed by Paclitaxel x4. Then bilateral mastectomy, then radiation.
I had my first chemo on 8/23, my power port was installed two days before that.
The worst side effect I've had is exhaustion. Zofran and Lorazepam handled the nausea well, Tylenol helped with the Zofran headaches. Today I'm feeling great, but labs show my white count very low
I'm still learning the lingo, but I have invasive ductal carcinoma, small tumor in one breast and one malignant lymph node. Triple negative, so no hormone therapy. MRIs and PET scans found no other suspect areas.
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