Who is starting chemo in September 2016?
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Jaigern, I also have taste problems as well, although not as severe as you. The nurse said no lemons because it's hard on the mouth. I also tried cranberry and apple juice, and for fruit, watermelon (good for hydration too because it's quite watery), and mango (so sweet). Cantaloupe is a good idea..I'm going to try it next round.
UPdate on helpfulness of acupuncture....I did it between round 1and 2 , then again just as round 2 started. When the Neupogen pain and all the other SEs started I had to cancel a couple of appointments. What I noticed is that my taste buds hung on longer so I could still enjoy food with little metallic taste, but as far as other SEs go and maybe the diarrhea didn't start as quickly, however once it got going it didn't help me much. I've decided not to continue because it's expensive to throw money at it out of pocket. Will see how the third round goes
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I feel extra whiny today. Is that a side effect? Compared to everybody else who posts, my side effects are almost nonexistent. Fatigue, neuropathy, metal taste, a bit of digestive upset, hair loss and bone pain. That's it. Nothing that has landed me in the hospital or caused me to see the doc more than I need to. I even got congratulated by the NP for managing my side effects so well (like I had anything to do with that). I feel bad complaining at all but I am just over it. I don't know how the rest of you manage.
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C2016..ha...too crazy about the movie....I finally looked at myself and yes my daughter was correct about Gollum but I wear hats all the time at home so I guess I will leave it...or I could scrub it hard in shower to remove the patches..
Smile2..your son is so sweet..they seem to do better than adults I think with their reactions and comments!!!
Sam...interesting about the increase meds..Glad you will get info on that...my 2nd round I did too well and was thinking they decreased mine...
So great some of you are ending AC...
Dennyj...wow..hope the passport thing works out..they need to realize you keep it for 10 amd you won't be bald then!!! Good luck!!
On a crazy note..... my aunt called me..newly diagnosed breast cancer...I referred her here since it is such a.great resource but ugh..and my dad is having hip replacement surgery soon so I will be.going to help him amd my disabled mom...crazy how I didn't take of work for me but need to do the for my parents. One day at a time...
And a nice note...my son's hockey team had a scrimmage amd wore pink laces.I thought..ok..it is October..at.the end of the game..they had me come out on ice.for a.picture..turns out the laces were for me!
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Hi All!
I am on day 6 of treatment #3 and doing much better than I did with the first two! I went yesterday and today for fluids only. I tried very hard to hydrate over the weekend and I am sure that helped a lot. I am super tired all the time but still I will take this over not being able to take care of my family because I can't get out of bed for days at a time.
I hope everyone is doing well.
xoxo
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beebs- I didn't think about lemons and sores. Great point! I would imagine that would be like pouring salt in an open wound. It was all we could think of at the time to get me to drink water. Thank you for the info!
Angela- good to hear that round 3 is better than the last one.
Imencken- your son and his team are super sweet for showing their support. Love to hear those stories.
Good luck everyone!
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Had my labs and dr visit before starting round 4 Thursday. Dr did not give me much reason to hope for better luck with nausea/etc for the upcoming rounds, if anything he said i should expect only 3-4 "good days" to the very end of each cycle. Ugh. i asked if anything he'd suggest I change to mitigate the nausea, he said what I'm already on is the best support for that issue (Emend, Aloxi in the iv day of treatment, plus Zofran Rx).
Labs were mostly ok but he did find a low reading indicative of anemia. that had shown up in the early labs, and has continued to get worse. it didnt throw off his recommendation to proceed with the next treatment this week, but he wants me to have a blood transfusion friday when I'm back at the clinic for IV fluids and Neulasta. I'm not sure why, but the idea of a blood transfusion is weirding me out slightly - more than the idea of the drug chemicals themselves.
On a happier note, he did an exam and when i asked, he said he wasn't feeling much where there had been a distinct nodule before. So that's good i guess though hard to say too definitely without a scan what could still be going on in there. Funny that he didn't appear to have planned to say anything to me until I asked. I'm not sure what everyone's experience is. When I meet in the office with the mo and his R.N., they spend most of the session staring at computer screens and asking me occasional questions to fill in forms on their menus. lol.
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missil, I recently changed my anti-nausea meds to Olanzapine and it's working well. ( it's prescribed off label for nausea). It was either that or Nabilone (marijuana in pill format). I don't know what state you are in and whether medical marijuana is an option.?
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Congrats to everyone finishing The A/C portion!!! I am so glad that part is over...A/C and that neulasta kicked my butt!!!
Sam - My nail beds are black also...my finger tips are sore and the creases in my fingers hurt a little when I bend my fingers...Me and Emily are on different chemo's...I guess all chemo affects our hands and nails...which sucks:(
MBella - glad your C. Diff. is getting better lady!
Thanks for the info on the difference btw. the 4DD Taxol vs. 12 wkly Taxol...b/c I was wondering why some of us were doing 12 and some only 4...me personally I would rather do the 12 weekly...I need something mild after that A/C....I had my MRI done yesterday..which went fine....I took and Ativan before I went and it helped with being in that tube..lol....I am praying that the tumor has shrunk even though I can't physically see a change in my breast...I start my first Taxol on Friday...I am very nervous...I don't know how Taxol is going to affect me...the unknown sucks!!..lolhope everyone has a good week! Stay Strong!!0 -
Nayda--Please post how the Taxol goes. I am right behind you. My first one is a week from Friday. Getting very nervous.
AC#4 has been bad. No side effects to speak of, but I have never felt this level of tired in my life. Not even when I had pneumonia for a month a few years ago. I feel like I haven't slept in years and really that's all I've done this week!
I'm still interested in the varying information about hair growing back on Taxol. I've been told that it will grow back by several nurses and heard it from other patients. MO originally told me it would grow back too. When I saw her last week she said it would not grow back and the hair I had left as well as brows and lashes would be gone soon. I've read it on these boards that many people have had theirs start growing back, yet others say theirs fell out. Guess everyone is different. My biggest concern is the neuropathy that goes with Taxol though. VERY worried about that. I read somewhere that 67% of people get it. I was told by nurses at my last infusion that the doctors are no longer recommending icing hands and feet to prevent it. Once again, who knows what we can believe anymore. I don't know about all of you, but this needs to hurry up and be done!!!
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Seq...I am worried about neuropathy also....I don't want that on top of everything else going on...I will definitely post how I feel after my first Taxol on Friday lady....I hope am one of the one's who hair grows back on Taxol
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I've read about taking glucosamine for neuropathy, but can't find the recommended dosage. Does anyone know? TIA!
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ACS74: Glucosamine or 'L-Glutamine' for neuropathy? If 'L-Glutamine (different from glutamine) then I can help you with that info.
Vicki
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I get my blood drawn right before an infusion and a week later. My white blood count has always been high. I've also been experiencing pretty extreme bone pain but not this cycle. Today was my follow-up blood work and the white blood count was in the normal range for the first time. Do you think this is a coincidence?
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My four DD AC are behind me and I had my first DD Taxol infusion today. As previously posted by others getting dose dense Taxol, my treatments are every 2 weeks, just like the dose dense AC. I'm a bit worried about the higher dosage per treatment but really wanting to get the treatments behind me. Anyway, the first Taxol treatment went smoothly. They take all sorts of extra time and steps to prevent an allergic reaction. I received my normal IV steroids and they added both Benadryl and another antihistamine to the IV mix prior to treatment. They then hooked up a TINY bag of Taxol and I laughed and said "that's it?" Nope, that turned out to be a test drip of Taxol. Once that was safely infused without a reaction, they hooked up a giant bag of Taxol. Ugh. It took a long time. I was at the office at 7:55 am, got to the chemo room at 9:00 am, and finally finished up just after 1:30 pm. Managed to do early voting and a quick stop at the store afterwards before heading home.
MO recommends a B-complex vitamin supplement to help minimize neuropathy symptoms, so you might want to ask about that. He says that neuropathy symptoms are common on all the taxane treatments but that it should fade within a few days of each treatment. If it fades like that, I should recover completely after treatment is finished. If the symptoms stick around, I am to report that, and it increases the risk of lasting neuropathy. Just something to keep in mind. Don't panic at the first symptoms of tingling, pain, or numbness in your hands and feet but be sure to report the symptoms, especially if they last beyond a day or two.
Oh, in other news, my 19-year-old daughter brought home a stomach virus from her college campus. I'm keeping my distance but it is killing me not to pamper and care for her. Reported the illness to my MO for guidance on how to respond if I end up catching it and he exclaimed: "Stay away from her! You don't want that!" Gee, really?
Mislil – If you need a blood transfusion, I think you will be amazed at how much better you will feel afterwards. I'm only a little anemic at this point and the doctor wants to just keep an eye on my numbers. However, if he says "blood transfusion," I'm jumping at the chance. Also, there is no one best anti-nausea regimen since we all react differently. Have you tried Phenergan or Ativan? Keep asking to try something different if your current meds aren't controlling your nausea.
seq24 – Of course you can share that other medical offices are having issues with the adhesive on recent Neulasta packs. I got a new one just today and they are still adding extra adhesive at my office.
Bagsharon - It definitely sounds correlated to me. If your bones weren't overstimulated to produce white blood cells it would make sense that both the level of pain and number of cells would decrease.
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Vicki-it very well could be L-Glutamine. This darn chemo fog, I can't remember my own name half the time lol. I would appreciate any information you have
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beebs2704, thanks for the ideas. I'm not sure if I'd want to consider it (personal choice), but for my job any form of marijuana would be a no-go.
Leydi, thanks. I'm still finding the idea of the transfusion icky, but I guess I'm hoping that it will help me deter side effects on the theory that maybe i was run down enough with the anemia for rounds 2 &3 and that helped the nausea take hold which I didn't have at all in round 1. Probably wishful thinking but it would be encouraging to not face that these upcoming rounds for such long periods. Even today I've still had queasiness so it ran virtually the way through round 3 except the actual treatment day and second day when the IV anti-nausea drugs were in my system. By Sat/Sunday, the queasiness was starting to appear.
The only Rx I have at home is Zofran / Ondansetron, and for the heck of it I tried the sea bands, which I can't say if they've had any effect - not making anything worse, at least. And have tried the queasy drop product; that helps for very brief periods of time.
I may ask the nurses tomorrow what they think. Last time I was in the clinic, I was adjacent to a poor woman who seemed to be trying several things to fight off nausea; her case seemed much worse than mine and they were trying to mix up some things to keep her from being hospitalized
If I still have a lot of nausea this time, I can call my MO back. his nurse seemed more inclined than he did whether there could be something else worth trying; I have read that Zofran is more effective per some study or other; but does seem like individuals might not always have the same reaction? I hope the incidence of permanent hair loss with Taxotere is low. Lawyerrs are constantly running commercials about it in my area, and I've started to see them on Facebook. Don't need that to worry about prematurely on top of everything else.
Best wishes to all, and congratulations to those who are closing in on the end.of their major chemotherapy phase.
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acs74 - I was also told the L glutamine powder would help with neuopathy. I was told 10 grams , 3 x day for the first 4 days after treatment. It can be added into food or drinks ( cold/cool only NOT hot items). I haven't really had any neuropathy problems yet , but I do try to add the powder to my smoothies/juices when I can.
I have the metal mouth issue too. I have some all natural hydration packs to add to water to help me and I can do good on the day before and day of treatment, but after that it's so hard to drink! Everything tastes like sh#t. I, fortunately, have a lot of friends and family that have been making and sending me lots of soups! It tastes the best for lunch & dinner and I'm getting my liquids in with the meal!
I also rely on fruits and all natural Popsicle's, especially the first week.
My first round of chemo, I lost my voice. I thought it was a coincidence with allergy since I'm prone to laryngitis in allergy season. I also had thrush with first chemo. Finally got my voice back after 2 weeks. Had second treatment on Friday and by Monday My voice was gone again. No thrush or mouth sores. Went in for hydration today. Been rinsing mouth / gargling with warm water & bk soda along with Biotene. Try to drink tea with honey & lemon as much as I can. Normally love that, but chemo makes me hate it now.
My chemo pre meds are Emend, Aloxi , benedryl, Pepcid.
Anyone have any thoughts on the chemo laryngitis? It's definitely better than the other SE's that could be dogging me right now, but it does make life difficult when you work in a classroom of 20 kindergarteners with out a voice! Thanks.
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ACS74 - okay hopefully this is what you're looking for and will help with the neuropathy. This is taken off of an info sheet for chemo-induced peripheral neuropathy from Seattle Cancer Care Alliance. Please be sure to run this by your MO if this is okay for YOU.
Make sure you get 'L-Glutamine' protein powder and not glutamine, there is a difference. You will also take one 100 mg. tablet of vitamin B6 concurrently with the L-Glutamine. I purchased both the L-Glutamine (NOW Sports brand) and B6 tablets from Amazon.
Dosage: 5 grams which is approx. one heaping tablespoon (one tablespoon equals 4.2 grams) mixed in 8-10 ounces of a non-acidic beverage or sprinkled on food.
Take the L-Glutamine and the B6 tablet at least two hours before chemo on chemo day then repeat in the evening. Continue twice daily through day four. My chemo-pharmacist told me to continue once daily - okay to miss a dose or two - in between infusions. I followed the twice daily on days 1-4 and once daily from day 5 to the next chemo and didn't have neuropathy until . . .
I stopped a week after my last chemo thinking I dodged the neuropathy bullet. Approx. three weeks later neuropathy hit strong! It started as tingling and then eventually numbness in all toes and the ball of my foot on both feet and also my fingertips on both hands. Stupidly, I was slow to go back on the L-Glutamine protocol but once I did it stopped progressing and started to reverse. It's been three months to the day from my last chemo and I still have it in a couple of toes on both feet and a little in my fingertips.
Moral of my story: Continue taking the L-Glutamine through at least one or two cycles after your chemo ends. If you start to feel symptoms start the process ASAP.
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hi ladies. Haven't been around much. After 2nd chemo I had a cold with fever and congestion, then my kids each took turns with viral infections. Thank God I didn't catch it though I was taking care of them (mask and gloves of course). Had more symptoms of neuropathy but I think acupuncture and taking L glutamine (from whole foods in capsules) helped. Yesterday was 3rd infusion. Perhaps it was an afternoon session, but I have been feeling tired - no jolt of energy from steroids like the first two times. My main concern now is my reconstruction surgery. While the MO says she is confident my blood work will be normal 4 weeks after last chemo, PS is concerned with body being too tired for proper healing. So, I had a single mastectomy and was planning to do a lift on my "native" breast during the implant switch surgery. Turns out, the surgery is more invasive for the healthy breast as there is a lot of pressure on the tissue and the wounds may not close properly. For the implant breast not so much - relatively simple. Now I'm a little scared, I hadn't realized it was such a major procedure. Has any one of you done the same surgery? What has been your experience? I have to confess, I want it done mid December because of kids' and my school breaks and because my mom will be staying through the end of December and can help me with the house And the kids. It just that the nurse painted such a vivid picture of things that could go wrong..
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Yesterday was my first Taxol infusionand it was a loooooooong day. I live in suburban Long Island and drive into Manhattan for treatment. Left my house at 6 am so I could be first in line to have bloods drawn when infusion center opened at 8. Then up to see the MO for an8:40 appt which always takes forever. I was seen and back at infusion center at 9:30. There was a substitute nurse working with the usual team of amazing, efficient, upbeat nurses and she moved like a slug. Of course I drew the short straw.
I'm doing cold capping so my capper started to pre-cool my head around 9:45. They didn't even start the pre-meds(in this case Benadryl and Steroids till 11. Then they had to titrate the Taxol to watch for an allergic reactions (one of my biggest fears, which thankfully did not materialize).dose dense TAXOL took 3 hours to infuse- finished at 4 pm. then had to cold cap for additional 4 hours.
Thats right! That brings us to 8 pm if you were keeping track- the infusion center was already closed. We had to finish capping in the main waiting room of the entire breast center. Not too comfortable! I walked back in to my house at 8:45 but I guess the steroids kicked in- by 9 i had loaded and run the dishwasher, mopped dried raw egg off the kitchen floor, prepped coffee machine for the morning (and accidentally brewed it then cleaned and reset it) and put my chemo clothes and blankets in the wash. What a marathon of a day!
Ill be on the lookout for Taxol side effects these next few days- the PA really played them down (She claims no nausea- just some sore muscles and transient neuropathy-ha!)and implied it would be nothing compared to AC, but I think we ladies know better!
Bagsharon- a friend of mine who went thru this gave me a great tip for the bone pain- hers was from the Neulasta shots. I've been taking Zyrtec (also heard Claritin and Allegra work) one day before and 4 days after treatment. I've had zero bone pain thankfully. The doctors don't know why it works, but it does.
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I had a left side mastectomy with tissue expander and simultaneous reduction on the right side in my original episode. Followed by implant placement and additional tweaks on the right side about six months later. In general it healed very well, although it took some time before I could ditch the last of the several drains that were required. I had a lot of tissue to remove as I was pretty big up-top in those days, the surgery reduced me from well over a EE bra size to a C. The R side was almost painfree right away. The left side hurt like a bear initially due to the expander placed in the chest wall, I think. The scars faded considerably although I do have a thin light scar line that's visible, and if you feel it the scar tissue is palpable. Under the scar on the left side is where my new little problem lies.
I'm not sure how it will go for surgery this next time which isn't scheduled or even fully planned yet. They may re-do the mastectomy or try a sort of lumpectomy in the new tumor area which is in residual tissue on the side where I had the mastectomy before. The PS seemed much more worried about recovery this time, and wanting not to disrupt the implant if it all possible. (Which I'd been thinking to replace since they don't last forever and it will be around 8 yrs old at this new surgery.) I didn't think to ask if her concern was due to chemo effects, or radiation a second time on the same breast which they are debating to try for me. Or just the effect of the previous surgery plus I'm 8 yrs older lol.
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Today is day 9 after Emily's 3d infusion and she is doing pretty good. Days 5-7 were tough because of fatigue, but she is rebounding now. I must say, I find it interesting how many of you are on a hydration fusion schedule. Emily has not had to do that at all. Of course, she has always been a crazy water drinker.
NoUGo-Ca - Thanks for the tips on fighting neuropathy. Emily's seems to be getting worse with every treatment. She has been taking B-6, but not L-Glutamine. We'll see if that helps.
Bagsharon - Emily has been taking Claritin 24 starting the day before infusion and 10 days after. She has had no bone pain. Maybe that'll work for you.
MFalabella - Glad to see you progressing in your treatment. We need to hear from you more. You started this thing!
Myraclaire - "Of course I drew the short straw". Ha! My life in a nutshell!
misslil - Totally with you on the permanent hair loss thing. That is one of Emily's worst fears, although her MO says it is highly unlikely.
Hope all of you who are struggling with SE's feel better soon!
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Thanks for the tip about Claritin, been there, done that. No help whatsoever. I tried Allegra too. That's why I'm looking for other reasons it is happening. It is by far the worst side effect for me. I would say the pain is 8 out of 10, worst than labor, the most excrutiating thing I have ever experienced.
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Sorry to hear that. Your MO has no suggestions?
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My MO said Motrin. Ha ha.
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hi guys sorry I havent been on much. My laptop died so I am on my phone only which sucks. I hope you all are well....I'm doing pretty good. AC #3 finally next Tuesday after the 14 day delay for the c iff and port infection. I envy all of you that are finally done with AC and on to the next. I will get there soon enough I guess lol
XoxoMichelle
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NoUGo-CA thank you so much for that! I will have to order some. My hands and feet tingle all the time now and when I apply pressure it's worse.
I'm day 8 past 3rd round of chemo and boy oh boy the fatigue is strong with this one! I had more nausea this round but not enough that I took anything for it other than queasy drops. The bone pain lasted 4 days instead of 3, but it too was manageable with motrin and claritin. ( I take claritin every day and it has helped decrease the intensity of the pain). I ran a low-grade fever for two days this round which made me overall just miserable on days 5-6. I have developed a dry cough. I was worried I was getting sick, but just a persistent cough is all I have. Has anyone else experienced this? Also, does anyone have twitches? My eyelid is constantly twitching starting week 2 and ends right before treatment only to start again week 2 following chemo.
Yogi- I have not heard of anyone losing their voice. I'm so sorry, I can't imagine.
misslil-I too worry about the hair loss. So far, I have a little that is still hanging in there. I keep expecting it to go, but it just stays there. Its just enough to not be bald, I can see my scalp. It also sticks straight up, so that gives me a good laugh when I look in the mirror.
Happy to see everyone progressing. Hang in there ladies!! Be strong
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Went in today for my fourth TCHP treatment. Interesting morning. The R.N. in the infusion center went through her checklist on side effects I'd been seeing. She wanted to double-check about the worsening issue I've been having with intermittent moderate weirdness in my fingertips which she took as a form of neuropathy. The on-call MO advised her to have me totally skip the treatment today. She was shocked, as at most she'd expected he or she might have chosen to dose reduce. I'm not sure how that would have gone with my regular MO if he got that question, but he was not around today so someone else answered.
Bottom line, I wound up with everything pushed out to next week. They did go ahead with the blood transfusion and i got a copy of my lab report history. I can see why the transfusion was recommended, I had a reading of 7.3 which is in the "severe" anemia range, and not that far above the 'danger danger zone' per at least one medical site i googled last night.
The R.N. was also more proactive about the continuing nausea and occasional vomiting that have been running off and on since round 2 started. She consulted with someone and they wound up calling in a prescription for Compazine so I can have that at home if needed to try in lieu of or together with the Zofran. Will definitely want to check that out as my first action when I got home today from the clinic was to get sick, ugh. The soggy tuna sandwich they gave me for lunch may be most at fault for that effect, but I'm paying attention to any further issues tonight in case it could be connected to lagging effects from the transfusion somehow.
Other options she mentioned if i still struggle with the nausea/vomiting were Adavan (sp?), and scopolamine (sp?) patch. I'm thinking the latter is what i've seen seasickness-troubled friends use when they went on a cruise but I haven't looked it up yet.
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misslil--I had the scopolomine patch for all 4 of my AC treatments. It can be left on for 72 hours. I had that and wore the Sea Bands and had absolutely no nausea at all. I never even opened the 3 different prescriptions I had for that. I am very prone to motion sickness and had terrible morning sickness and was told that is an indicator to nausea during chemo. But again I had none. However, my neighbor is the pharmacy manager for a huge hospital here and she said that a lot of people get sick from the scopolomine. One thing about it though is you can take it off for awhile and put it back on later if you think you are affected by it. Also FYI, it is pretty expensive. My prescription for 4 patches was $70!
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seq24, thanks for the info, will keep it in mind. just got sick again tonight shortly after popping a Zofran. something about the form of the pills with those is awkward for me. they dissolve so quickly I start tasting a nasty taste from them before I can even swallow them. which makes me start to gag when I'm already queasy. then i'm not sure if I even kept enough of the Zofran down to make a difference, but don't want to take another to double-dose accidently. ugh. will definitely make a point tomorrow to pick up the new Rx and give it a try.
on the bright side, I seem to have a new rosy glow from my extra blood cells ha.
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