August 2015 Chemo Group
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Duzy-I am going to ice for my last 2 treatments. Both my fingertips and toes. It was recommend to me by my plastic surgeon. She started having neuropathy and iced for her last 3 treatments and was fine. The ball of my right foot feels funny since chemo. So hopefully this helps.0
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Good to hear. I plan on bring my own ice packs for the next treatments so I can refill them when needed. I would not have even known about it if it wouldn't have been for this site. I am also hoping I do not have too many other SE. They said I should not get nauseous like I did on the AC so we will see. I also have to give myself the Neupogen shots each day and I started on Steroid pills twice a day for day 2 through 5. They keep telling me this phase is easier than the first phase but I have been reading people struggle more with the Taxol. I struggled with whether to do the Taxol as dose dense or 12 weekly cycles. They told me one dose dense equal 3 weekly cycles.
DeeRatz - I hope that feeling goes away for you soon and does not get any worse.
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Duzy-
We want to welcome you to our community here at BCO! We hope you find the support and encouragement you need as you continue your treatment.
The Mods
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thanks Duzy, yes I do ice my fingers and toes during the taxotere tx, and it is my hospital that does the icing. I had no idea until my first round that they would be icing during that infusion.
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That's good to hear I hope it helps. I wonder what the difference is between Taxol and Taxotere. They seem like the same type of drug so wonder why some get one and some get the other.
I have found this site and reading others going through the same thing very helpful.
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Duzy-same drug, it goes by different names
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hello dear friends!
Just checking in. It's late and I need to be up early so I can't write much. (Strike that, I just read over this whole thing and realized it's a short novel. Sorry!)
Duzy, welcome! We are very supportive of each other, so dive on in and share whatever is going on. We are here for you!
@AusUSA, first I just want to say how terrible it is that you're being treated so poorly at your infusion center. I hope you have some alternatives. Even if it's a different public hospital you should be able to find people who are going to respect you and be kind. You deserve that! As for writing, I write poetry, and I am unpublished.
@KateB, good golly! The Bomb is right! I've been doing okay with senokot and drinking lots of water, plus fiber in smoothies (although the fiber makes smoothies ... not so smooth, so I usually only use a half-scoop of fiber). Bought a large bag of organic frozen strawberries today and plan on making a smoothie in the morning to make up for having to be up so early. I'll remember to throw some fiber in there. I don't want to have to resort to The Bomb!
Re: the plumbing. For me the worst part is the discomfort when I have to go, rather than being backed up ... it can get really painful and you sort of feel like you're going to keel over (is that just me?) I have to distract myself with mindless games on my phone, I can't even read anything that takes concentration. Ugh.
@Carolyn, good for you, doing that video! It's funny how I used to really dislike "that pink-ribbon stuff" ... Now I'm planning to make myself a pink-ribbon bracelet. LOL.
Let's see, what else. Oh, I did an intensive hunt today for something to soothe my irritated head. I thought for some reason that the scalp irritation only affected people who've shaved their heads! But no, my hair hurts all the time. So I found a natural Shea butter conditioner/salve for kinky/curly hair. I don't know if it's leave-in or not, but I'm going to use it like a leave-in conditioner. It smells nice at least, and doesn't have any harsh chemicals in it. Hoping it will help at least as much as the coconut oil lotion I've been using!
Oh! I forgot the most important news, I sent my hair away to Chemo Diva today! It felt funny taking in a package to the post office with CHEMO DIVA written right on it in big letters, but the postal worker didn't even flinch. It won't arrive there until next week and I won't get my halo wig back until the week after, but I'm excited to have some hair againI think I'll probably have it cut much shorter than it used to be, once I get it back. But we shall see.
On the downside, I'm hitting a rough patch with my parents' dementia-follies. I've had to leave the caretaking up to the assisted living staff for now, to preserve my own sanity and sense of well-being. I won't bore anyone with the details, but if you have dealt with Alzheimer's you know that it can get rough sometimes, emotionally speaking, with some of the more unpredictable symptoms (depression, paranoia, sundowning). I seriously think the stress of all that was a factor in my getting this disease in the first place. So - until things settle down, I'm leaving it all up to the pros.
Happy Thursday
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AusUSA, my son studied advanced ancient Greek and Latin, as well as a couple of computer classes (I remember one was on artificial intelligence), at Melbourne Uni. That sounds like an odd mix, but he's graduating in May with two degrees—a Bachelor of Science in Computer Science & a Bachelor of Arts in Classics. Re: your treatment at the hospital, that's unacceptable. Whom can you speak with about being shut out by the nurses? I can't believe they're so cold to you, especially with your kind gift to them. Please don't let the meanies get you down, not to the point of stopping treatment. (((hugs)))
superius, congrats on your last infusion!
knitnpurl, I hear you about the food aversions. My husband makes lovely meals and I find most of them distasteful. Lately I've been happiest with cake and tomatoes. Great news about not being able to feel the tumor!
Rosieo, sorry to hear about the port not being healed yet. I had my port placed on August 5 and started chemo on August 6; then again, I also developed a port infection that has yet to clear up entirely, so perhaps I should have waited. Take it easy and good luck with healing.
michelle, that wig looks amazing (as do you)! I bought a new wig as well--it's the Jon Renau Scarlett wig in shaded praline, but it doesn't look right. I'm going to brush it some more and see what I can do with clips. I figure I might want to wear a wig once or twice a month, but so far I've had no luck. My expensive (insurance refundable) wig doesn't thrill me, and now this Jon Renau Wig isn't doing it for me. I'm glad you found something that looks so natural.
Kate, yes, the 400-pound leg feeling is crazy. My husband put his hand on the small of my back last week to help get me up the hill as we walked the dog. Walking felt like wading through concrete. Thanks for the milk of magnesia & prune juice recommendation—I might take that next week if my standard constipation sets in. Senokot-S has been unreliable.
Musosgirl, excellent news! I'm happy for you! My doctor has asked that I wait six weeks after completing Taxotere/Herceptin/Perjeta before I begin radiation. I'm figuring on starting rads in January if my treatments continue as planned.
molliefish, sorry about your sore full belly. I hope things move along soon for you.
DeeRatz, don't you hate how you have to resume chemo just when you're feeling better? I have my fifth infusion (first of THP) today, and last night I scoured the fridge from top to bottom because of all of my energy (okay, some of it might be from the steroids). Re: your radiation decision, it sounds reasonable, and I'm glad your body has responded well to the treatments thus far. You're almost at the finish line!
Carolyn, cool that you were able to advocate for others—that sounds like a wonderful opportunity!
Duzy, hi there! We're similar in terms of presentation, only you have fewer positive nodes. I'm wondering if your surgeon considered removing more nodes, since your sentinel nodes were positive. My sentinel nodes were positive, so my surgeon removed two packets of nodes for a total of 25 nodes altogether. I'm icing my hands and feet for the first time today (I iced my mouth during all four AC infusions). My husband bought eight large ice packs. I'll have my hands and feet on them (four at a time with four to swap out if the first ones get too warm). Then I'll have Ziploc bags full of ice to drape on top of my hands and feet. I have two baking pans (half sheet cake sized)—one for under my feet & one for under my hands. Also, I have thin gloves and socks to wear. I'll make sure to have my husband take a photo of the setup tomorrow and share it here. I'm also bringing a thick, warm, fuzzy blanket to wrap up in!
Taxol (paclitaxel) and Taxotere (docetaxel) are both members of the taxane family, and both can result in peripheral neuropathy. I was originally scheduled to have Taxol every week for 12 weeks, but since we moved to adjuvant Perjeta (in addition to Herceptin), I've had my regimen changed to Taxotere every 3 weeks for 4 doses. Taxotere is the clinically approved taxane drug to be administered in conjunction with Perjeta and Herceptin. These are from my notes after I met with my MO: "Taxol results in more neuropathy and hair loss, while Taxotere results in more diarrhea and a risk of hospitalization due to low blood count. For this reason, I'd need to continue Neupogen shots for a week following each THP treatment."
Mom2ABoy, I've had luck in washing my scalp with conditioner and then using a lotion on top of that, but it can still be uncomfortable. Hope you find something that helps you feel better! I'm sorry to hear about the difficulties with your parents. Are you able to visit them in the assisted living facility or are you staying away because of your weakened immune system?
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Success with the prunes, plums, walking and pure attitude. Damn the Senokot next time. It'll be stewed prunes, twice a day from day -2. Jeepers. Happy to be feeling better. I'm supposed to be writing an application for a new job for when I'm finished my assignment. I find it pretty hard to talk myself up when I feel like poo. :-) I only have 8 days left. The supervisor who is encouraging me to apply has said the interviews will be only a few days after the advertisement closes. That's day 4 or 5 after my last chemo. That's a deal breaker. There's no way I can interview in that state.
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@JenPam, I think your son is having the future that my son would like to have! Computer science and the classics are two of his favorite subjects. Throw in chemistry, Kung Fu, and creative writing, and you'd have him in a big alliterative nutshell. (Oh and then there's the D ... as in dubstep .... which some days is interest #1 above all others.) I'll have to tell him about your son's dual degree in Australia. He's fascinated by Oz as well ... because of the killer animals, naturally.
(Boys!)I normally visit my parentsat least twice a week. Since I've been in treatment it's been only once a week because my energy level hasn't been high enough. With a few rounds of Leukine I'm feeling more like myself but it's difficult to visit them because of the paranoia. Anyway I'll see them this weekend, I always do no matter what.
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I just posted this in the constipation section of the forum, but thought some of you may benefit as well.
I have been suffering severe constipation since chemo started, only having a bowel movement about every five days, and then it was excruciating. It was so bad I was going to quit chemo. I went to palliative care and they set me up with their "pooping protocol". It is working for me and is different than anything my chemo nurse said to try. So if you're really stuck (pun intended), here it is verbatim. I am not a doctor so use at your own risk
Hydration! Dehydration is the number one cause of constipation along with pain and other medications. Drink water, gatorade, diluted juices, etc, mix it up! IT WILL BE KEY TO BE VERY REGULAR IN THE TWO DAYS GOING INTO YOUR NEXT DOSE OF CHEMO.
Prevention of Constipation
The medicines for pain and nausea make the bowels slow down, so you'll need to take a stimulant laxative every day to counteract this. This is essential, because severe constipation can require hospitalization.
Goal: You should have a bowel movement every day or every other day. Do not use fiber supplements, get your fiber from foods you enjoy, oatmeal, prunes, green smoothies etc.
Purchase the following over the counter products at your local pharmacy.
- Sennekot 8.6 mg tablets (sennagen)
- Miralax, powder form
- Milk of Magnesia liquid form
- Bisacodyl (dulcolax) tablets
Keep these in your home so that you can stay ahead of your constipation
Prevention of constipation EVERY DAY NO MATTER WHAT
- Please start Senna: 1 tablet twice a day, every day to prevent constipation. You may gradually increase this dose to reach the goal of 1 bowel movement at least every other day. (up to four tablets twice a day)
- Take one dose of miralax (one capful) every day. (My nurse had me start with 1/2 a dose every evening and that seems to be working. )
- You may hold these medications for 1 day if you are having frequent loose or watery stools.
Rescue Treatment for Constipation: IF NO BM BY DAY 2
- If you do not have a bowel movement on day 2, that evening take Milk of Magnesia 1 ounce by mouth at bedtime or Bisacodyl tablets (2 to 4 tablets)
- Next morning (day 3) If no bowel movement Repeat Milk of Magnesia with 2 ounces by mouth or bisacodyl tablets 2-4
- By afternoon if no results call your doctor for advice. Also call if you have severe cramping or abdominal pain, or you cannot pass a solid stool but are having uncontrolled liquid stools.
Something my doctor told me that I want to add is we cannot use any type of enema or suppository when on chemo, it runs the risk of a bowel infection. He also said the measure of enough hydration is how much you're peeing, not how much you're drinking. So drink enough that your're urinating frequently. Good luck, a good poop is highly underrated!
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I just read it on the other forum too, thanks so much RS. I'll be sure to get off on the right foot next time.
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There's a constipation forum? Wow! What an experience this all is...
Thanks for sharing :-).
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michelle888 - Your wig looks amazing and adorable! I just ordered a new wig online that should get here in a few days and I can't wait. A wig that makes you feel good can make the world of a difference.
AusUSA - I'm so sorry they treated you that way, you don't deserve that.
Duzy - I'm on Taxotere and did ice my hands and feet. The nurses said I didn't need to but I did it anyway. Also, for my first infusion I chewed on ice for the Taxotere portion and had no mouth sores and my taste wasn't too affected. For the second round I didn't chew ice and my mouth got pretty yucky and my taste was messed up for nearly a week. Some things still don't taste right. For my next infusion I'll definitely chew ice again to see if there's a correlation.
I get my 3rd infusion this Monday and I swear the week before my infusions I get a little depressed. I got a little weepy on the way home from the grocery store as I passed by the gym I used to work out at. A huge part of me mourns my former carefree life I had before all of this.
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Duzy - I didn't have any neuropathy. The only side effects I had were sleepless nights from the steroids and then an iffy stomach the week following chemo. Once I was a week out, I felt pretty good so week 2 and week 3 after chemo were pretty normal. I know I am lucky! Hope you are the same!
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Tx #3 has been a roller coaster. I had started an entry right after the round, but I did something and lost it. Then I said I would get back to it; didn't think it would take this long.
I am still catching up on the thread and didn't realize how much I miss the thread until I started to read it. I have a husband who is supportive and not perfect, but I am not either and we will be celebrating our 15 yr anniversary on the 21st. Granted I have days when I am not sure I want to continue our relationship, but honestly I don't know where I would be without him or someone else. I suffer from depression and my upbringing was not the greatest emotionally, so I can be very trying at times and I know that, but he is still with me and sometimes I wonder why. I just thank my lucky stars.
As far as tx, like I said AC #3 was a doozy. I did refuse the Zofran and that helped with the migraines. I also started a beta blocker to help with my blood pressure and migraines. Still having lots of issues with the nausea. Can't seem to get that one under control. The positive about it, is that I am able to keep everything down, but my taste buds are starting to slack. I have noticed that I always feel like I have this "coating"in my mouth and I am normally a water drinker and even water doesn't taste good. Crystal light lemonade seems to work though, which is okay, but I miss my water. I did run a low grade temp again days 5/6, but I didn't have to go into the hospital which is good. Never had night sweats until my fever broke during the night. That was yucky. Thank goodness I did it in a leather recliner that I had put sheets on. Today is a better day. No fever as of yet, but I didn't spike one yesterday until last night. Just a slight headache. Just found out that it is all s/e due to Neulasta, so I am pretty much quarrintined from Sat til the following Thurs. which is one week out from tx. Thank goodness I only have one more.
Well, I am going to stop for now, so I can finish getting updated on everyone. Hope all of you are doing the best that you can. Will write again soon.
P.S. It is only Oct 1 and I am tired of all the pink already.
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Thanks to everyone for the warm welcome to this site. It does help to see what everyone else is doing to get through this as positive as possible.
JenPam - I started out with a Lumpectomy in July because the surgeon thought there was no lymph node involvement so she said to start with this and maybe not have to go through chemo if I didn't need to. When she did the lumpectomy she did a sentinel node biopsy and removed the two nodes and told us she did not believe there was any cancer in them because they looked normal and were not swollen. Only to find out they contain cancer in them and she did not get clean margins all the way around. So it was decided that I needed to have a mastectomy but they wanted to do the chemo treatment first and during the surgery she will remove the remaining lymph nodes. I am doing the 4 dose dense Taxol so I will definitely bring my own ice packs next time. Would love to hear how that goes for you. I also am giving myself 10 days of Neupogen shots after each treatment and 2 Steroid pills for days 2 - 5. So far I have not felt to much bone pain that they said could happen but maybe it is more cumulative as treatment goes on
SoCalGrl - Thanks for the update. I am with you on the normal things to do. I have had the same feelings when certain things I used to do I can't seem to right now. That is why this is a great site to help everyone through these times. I hope it gets better. I hope chewing on the ice helps you next time. I didn't the first round beause the Benadryl they gave me knocked me out for awhile. I had my mom and daughter watching me so I did not have a allergic reaction which thankfully I didn't.
Suzanne50 - Glad to hear you do not have to deal with the neuropathy. Are you on weekly treatments or dose dense? My doctor said if it started and got to bad I would have to switch to weekly so I am hoping to get through without to much to be done in 4 treatments. I have my first round of Taxol on Tuesday this week and so far not to bad on any side effects yet other than the same not sleeping much from the Steriods.
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Duzy- I had my third infusion today. I had a reaction to the Taxtoere on my second round. Was flushed, trouble breathing, chest pains. They got it under control quickly. Stopped the infusion for 20 mins and restarted it and ran it slow and I was fine. Today pretreatment they gave me Benadryl, hydrocortisone and Ranitidine. My infusion went really well. I suck on ice chips for my whole treatment. I haven't had any mouth sores at all and my taste is off but doesn't taste like metal. I iced my finger tips and toes today. I would have had perky nipples if I still had some. Was a bit chilly but is worth it if it stops the neuropathy and my nails don't get messed up.
Feeling good just tired from the Benadryl. Had a bit of a nap when I got home.
Is anyone else having ringing in their ears? It feels like after you have been at a loud concert and your ears ring after. I mentioned this to my MO(who I don't really like) and he said that is unusual for TC chemo to have that side effect
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Duzy - I am getting 4 treatments TC, 3 weeks apart. So interesting how similar our stories are. I was also told that they didn't think it would be in the lymph nodes and that a lumpectomy was all they thought I would need. I was shocked when my results came back with no clear margins and 1/3 positive nodes. My mastectomy was one week later and they took out 9 more nodes - 2 more cancer positive. My original mass was 8 mm. So small yet caused such chaos in my body.
The whole thing seems so unreal. I still am sometimes in disbelief that this is happening. I take care of myself. I exercise. I eat well. I don't drink or smoke. Breast cancer can happen to anyone. But I guess everyone here knows that.
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DeeRatz - Thanks for the update on the second round of having a reaction. I will definitely watch for that. I plan on icing again so I hope it helps. I have not heard of the ringing in the ears.
Suzanne50 - Our situation is very similar. I am getting 4 treatments of Taxol 2 weeks apart. Since they decided to do chemo before my surgery I am not sure if any other lymph nodes will show positive cancer or if the chemo should take care of it. Either way the surgeon is planning on removing the axillary nodes. Then I will have 5 weeks of radiation. I agree on the unreal. I too don't drink or smoke and take care of myself - we just never know why and I think that is what I struggled with for the first few months. I survived the AC for 4 treatments and they are telling me the Taxol isn't as bad. I have had only one treatment and so far not too bad.
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Yuuuuuck. I feel terrible after #3 TC. It feels like a bad hangover with flu-tired. This is the first time I've felt lots of tingling in my palms, too. I think this is where some of you were last week...
Many of you seem to be doing better and hopefully more so after discovering the constipation remedy! Uh, hope things are going smoothly now...?
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Ok.
So my mom just came over and she asked if I could postpone my next chemo session (AC4) so I could go to a family dinner. (It's a big dinner affair for my brother as he eloped in April so sort of a reception thing but it's just a dinner and there is yet another reception in December).
My chemo is on Wednesday and the dinner is Saturday. Judging by my last experience I will not be leaving the couch, let alone the house until after Saturday.
I just looked at her and said NO. Didn't elaborate. Didn't need an excuse.
I don't even know if I can or not but I am not changing my chemo schedule. Not even for this dinner.
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Michelle - Those are the things that leave you speechless. Glad you could at at least say the word NO! I have been wondering lately with things like this if people are awkwardly trying to include us, or if they really don't have a clue.
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Thanks Sloane15. I was pretty flabbergasted. I'm really surprised she asked. My sister told me my mom said to her "it's up to Michelle to change her chemo date". Yes. Technically that is true. And I won't be changing it!
Sorry to hear you are having some negative side effects. Knowing that you have another one down and done with is always comforting! Hopefully they will pass soon!
Question for those in Neupogen or neulasta. Are you on it for the whole run of your chemo? I asked my nurse practitioner if I only needed it for my rounds of AC. He asked my oncologist and the oncologist is wanting me on it throughout my Taxol and Herceptin rounds as well. Just curious as in wondering if I really need it for Taxol. I'm just not used to having to take so many drugs so I question the need for them.
Everyone else. Hope you get some good rest tonight and you are managing the side effects well.
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michelle, I am on C/T (I understand Taxol and Taxotere are the same thing(?) and yes, I have the neupogren for each round. As of yet, I haven't had much pain with it (take claritin and an Aleve at the same time as the shot every time), and I will say that my WBC have been great. I think you probably do need it, especially this time of year when the risk of infection is so high (from colds, flue, whatever). But I've been doing well enough with it that the MO has given me his blessing to go east for a long planned trip next week. and NOTE: the trip falls in the MIDDLE of a round (at a time when I expect to be feeling pretty good, and while I admit that was a factor in how I scheduled the rounds, I would NEVER postpone my chemo for a family event. the nerve! But I do understand: one of my family members really is pressuring me to go to a family even that she planned after this all started, that is also on the other coast, and that is in the middle of my rads schedule. Sorry, can't do it. Can't be out of town. but she can't understand why I can't just change my apts. grrrr.)
Sloan, I am sorry this round was worse and that you aren't feeling well. Sending you hugs!
Octogirl
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Michelle: My treatment consists of 4 x AC (treatment every two weeks) followed by 4 X Taxol (also every two weeks). I have completed the AC portion (yay!) and had my first Taxol treatment yesterday. Each treatment is followed by Neulasta the day after. My oncologist said the Taxol is more toxic to the immune system than AC. Considering I wound up with Febrile Neutropenia during AC, he will not consider foregoing the Neulasta for Taxol. I am fine with that as the last thing I want is immune system complications again. I had a bit of bone pain during AC, but I also have osteoarthritis, so I'm not sure I can blame it on the neulasta.
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Michelle so sorry for having to deal with that. I've chosen to postpone my chemo by one week for a friend's wedding, but it also didn't throw off my chemo schedule and it was my doctor's suggestion when I brought up the wedding, since I want to attend that.
I'm just coming off my two worst days and my mil just left after "taking care" of us for 3 long weeks. I'm a little out of it.
As for neupogen/Neulasta, my mo said that Neulasta isn't used with weekly Taxol (starting that on my next round) and if I need it, I'll get one shot of neupogen.
I'm just having a down time. The days after chemo always knock me down, my mil being here didn't help, and with Oct 1 yesterday, I'm more depressed. My fb filled up with glowing pink cancer awareness or photos of awful mastectomies. I think I need a break. Most of the time, everyone's stories really do help and have gotten me through this far emotionally and physically.
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Michelle, sorry you were put in a position of needing to say "no." This is hard enough and even though we dread it, we want it over with asap. I'm doing 4 rounds of dd AC, followed by 12 weekly Taxol. My MO said I can't have Neulasta on Taxol because you have to wait two weeks after the shot for your next round of chemo. But apparently, if I need it, like Knitpurl, they will give me the Neupogen shot. From what I understand, it is less likely to be needed on the weekly Taxol.
I'm not completely caught up on everyone's updates yet. I just got out of the hospital on Wednesday. I spiked a fever on Saturday night and they kept me there until they could track down the source of the infection. Round 3 of AC was tough. One to go. Today is day seven and I'm starting to come out of the funk. Until today, I didn't see how I could face another round. Those bad days don't just bring you down physically, they really tank my mental health, too. I'm ready now to start pumping myself up for the last AC. Please let Taxol be easier!
Knitpurl, so sorry your MIL's help was a burden. I hope you start feeling better. Hope everyone feels better!!!
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Michelle - I am doing 4 rounds of dd AC followed by 12 weekly Taxol. My MO said no Neulasta shot while I am on Taxol.
I had my last round of AC yesterday. They gave me more aunti-nausea meds this round, so I am hoping to avoid the vomiting and diarrhea this time.
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Anyone having problems with neuropathy? I just finished #3 five days ago, and don't want to do #4 because of the neuropathy. Did you get tingles a few days after an infusion and they went away? (hoping...)
Dee - I hope you're feeling better. I had ringing in my ears right before my headaches set in the next day... Could that be it?
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