Cytoxan Taxotere Chemo Ladies- February/March 2013
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Mamy, you'll get the best advice from Melrose.
My approach to eating is a little different though. I'm eating more red meat than I usually do, but I haven't pushed myself to eat healthy foods if they don't appeal to me. After my first treatment I ate spinach a lot. Now I can't stand the thought of it and I've always liked it. When chemo is over for me, I want to spend the rest of my life eating healthy (which normally for me does not include much red meat) and I don't want to develop aversions to healthy foods that I ate a lot before chemo and want to go back to eating and liking: fruits, veggies, quinoa, beans, oatmeal, etc. So I am relying on supplements quite a bit. Also I discovered that my GI tract can't handle high fiber food very well right now, so I get my fiber from Miralax.
I just had my fourth treatment today and I have found that food starts to taste more normal after about two weeks.
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i had my first infusion tuesday and my mouth has that burnt feeling.
Is anyone going thru chemo without neulasta or another shot to help the white blood count come back. My oncologist wants to see how i make out without the neulasta and I feel terrified about what can happen. Has anyone else gone thru this???"
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Worrywart (love that screen name, I could have the same one lol!!) I do not get Neulasta. My counts dip very very low but my onc just warns me to wash my hands often and call if I get a fever and things like that. I'm on round 2 & haven't caught anything or needed antibiotics or anything like that this round or last... and this despite spending a LOT of time around young germy kids!!
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in denial, thank you for the feedback...I (as my name says lol) have been so worried. Ok does you oncologist check you?? they told me my counts would be lowest days 9 or 10 and just watch for symptoms of infection. I am not scheduled to go back till my next infusion May 28th. I will keep extra hand sanitizer everywhere I go. Thank you - It feels so much better knowing that someone else got thru it ok.
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I did not have a neulasta shot on the first round but my counts dipped very low and I had to have it with the next three. I developed a small fever around 100 but it went away the next day. Just make sure to stay away from sick people and places where there are alot of germs day 5-12 and keep your hands clean. Your MO isn't seeing you during the 9-10day period for a blood draw?
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The first round I had 3 blood draws (I think it was days 10, 15, and 20?) Days 10 & 15 were very very low but by day 20 they had gone up enough to have round #2. I saw my MO a few days before chemo (because I don't see him the day of chemo) to discuss round 1 side effects & make sure I was well enough for round 2. Now I don't need to get the blood draws anymore -- he said we will just assume my counts are low and take precautions, so I will only get the pre-chemo blood draw (and short visit with him a few days before) to make sure they've gone up enough for the next round. He doesn't monitor me for infection or anything like that. The low WBC makes you more susceptible to illness but in & of itself, it doesn't make you sick. Avoid sick people, wash hands frequently, wash foods & veggies and make sure meat/fish is cooked thoroughly. I also used a new toothbrush, avoided sharing nail clippers or razors with anyone in my family, things like that. I read that some people's WBC stays low even with the Neulasta actually.
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Worrywart- I understand your concern about not getting the Neulasta shot after the first round of chemo. My onco as well as the oncology pharmacist explained to me that the Neulasta shot would be administered only after I demonstrated a need to receive the shot. This meant that until my white blood counts dipped too low or I had experienced an infection or high fever, I would not receive that shot. After round 2, at the end of the nadir period, I developed a high spikey fever and chills. My onco prescribed two antibotics over the phone and kept me out of the ER. It was made clear to me that I would be receiving Neulasta shots after Rounds 3-6. The wait and see approach is fine. You aren't missing anything by not having the shot after the first round. FYI: The Neulasta shot is very expensive which may explain the reason for not automatically administering it to every patient. I had blood drawn the day I received my chemo round to determine if my counts were good enough to receive the chemo. I had an onco appt after the blood draw and before the chemo was administered.
Yes, I did turn into a little germophob but it's okay. As everyone told you, wash your hands. Don't share food/drinks with anyone. Brush your teeth several times a day ( usually after you eat) . Be careful flossing your teeth since your gums may be tender. As for the toothbrush, have extra ones so you can put the used ones in the dishwasher. I have toothbrush sanitizer which helps. I did not use my Sonicare electric toothbrush while having chemo because the brush action can cause microabrasions on your gums. I initiated the elbow bump as an alternative to the hand shaking and hugging.
If you are wondering if I stayed confined to my house, the answer is no. I would have gone absolutely stir crazy if I had. I often went shopping such as Target , grocery store and places where I knew there would not be a lot of people. I found walking around Target as a form of retail therapy and exercise. If there were some sick adults or little kids coughing or obviously sick, I avoided where they were. I did go out to eat to places that I knew were clean places and had eaten there before.
As far as eating, I used to eat 5-6 small meals everyday. That way my tummy was never empty and never totally full. A fed tummy is a happy tummy while on chemo. I kept a drug and food diary so I could keep track of what I ate when and how I felt afterwards and also to make sure I took my anti nausea meds on a schedule. I did eat a lot of protein and other certain foods to help keep my red blood counts from falling too low. I did not take any supplements or vitamins or iron pills while on chemo since my onco said she preferred that I try to eat the necessary foods rather than take supplements. Did that work.... YES, it did. I have to tell you that having to keep track of what I ate, helped keep my mind off of the chemo itself. It was a great distraction and also made me feel that I was in control over part of my body. To me, food is like a medication since the right foods can help one feel good.
Again, if you have questions, please post. Happy to help you. I am 9 months PFC and know how hard each of you work everyday to get through your time in chemoland. HUGS!!!! You , gals are not thinking you can do this, YOU ARE DOING THIS!!!!
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Melody, InDenial and Melrose - I got my blood drawn day of chemo, then to oncologist, then to get chemo. (All in same building - Columbia Presbyterian) If all goes well, that is also the plan for 2nd infusion. They have no planned blood work in between. I will take all of your advise and be very careful with washing my hands, brushing my teeth, etc.
I am hoping for the best and thankful for being able to have help from my wonderful "sisters" on this site. Thank you so much, it makes it so much easier. No one else really understands some of the fears, thoughts, etc.
Hoping that everyone has a great day and minimal side effects.
xoxo
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Hi everyone,
I have posted on the "over 60" thread about my mom but today had the first MO visit, and CT treatment is recommended. We are going back in a week to determine if moving forward with it. Is anyone "older" on this thread or have other health issues and been through it?
My mom had a stroke last June. She is 73 and, before the stroke, was fully independent- tennis, babysitting, bike-riding, etc. Now, I am her live-in caregiver. She walks with assistance and has difficulty communicating/speaking but is able to understand us more and more. She goes to physical, occupational and speech therapy. She had a lumpectomy in April and is triple negative. The MO said his biggest concern is her being able to communicate how she feels. Abstract things are difficult to explain- like, numbness and tingling. So, even today, we had a hard time getting a clear answer on if she has any now. A couple months ago, I think one medicine gave her some tingling because I would catch her looking at her hand and turning it over to look at the other side. She had never done that before. Dizzy and nauseous I've been able to communicate through gestures but who knows what she might be feeling with CT and not be able to tell us...
She has really thick hair that all her shower aides have complimented her on. I know she really identifies with it. I also know that her sister will lecture me on putting my mom through this if we decide to do it. Her sister (whose son died of cancer) thought getting a biopsy was a bad idea- "that some people just live with it." I drew pictures for my mom for her to choose lumpectomy/mastectomy. I will certainly talk to my mom more about it but ultimately my brother and I will be deciding/influencing.
My fear of course is if one of the rare side effects happens or some terrible infection or complication. On one hand, she is just getting back on a consistent therapy schedule after some medication side effect issues so it is difficult to think about another detour, and we have been looking forward to enjoying summer activities and taking a trip. On the other hand, I know that chemo is her best defense for the future. The MO said some people choose quality of life and skip chemo (though he says it will be beneficial and recommends it for mom.) I should've asked- that's a few months quality of life, right?
Sorry for the long post. Any comments?
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Regbeach, can you get a second MO opinion?
My breast surgeon was of the opinion that chemo was advisable for me because, as he put it, "At 57, you're much better able to withstand it than you would be at 77." Not sure if my MO would have said that. He just thought I needed it, but then that's what MOs do.
I would be very concerned about your mother's other health issues and difficulty communicating. For me getting through my first four treatments on this regimen has involved a lot of attention to my SE's and a lot of pro-active self care.
Peripheral neuropathy in her feet could be a major problem at your mom's age.
My heart goes out to you. I lost my mom to Lou Gehrigs disease three years ago. She was 77.
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A query for those of you doing 6 treatments. What were the deciding factors to do 6 vs 4?
My MO has said from the start that "6 is better than 4," but he hasn't really pushed it or tried to make a strong case for it. Today he talked as if it was my decision, but he still thinks 6 would be best. I've tolerated the first 3 pretty well and today was #4, but I'm wondering if I really need 6. I'm thinking about stopping at 5.
I will be doing rads and either Tamox or an AI eventually. May consider having my ovaries removed too.
My oncotype DX number was 21 and I was peri-menopausal going into this at the age of 57. The rest of my DX is in my signature. I know there's even an older thread about this and I've looked at it, but wanted to poll those of you here who are doing or have done 6 CT treatments.
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I have the exact same question. I was told I would do 4-6 courses depending on how I tolerated it. Since I have only completed 1 treatment I have not questioned my Dr. about it again, but I do wonder and will readdress it with him. I have not been able to find any information on the benefits for 6 versus 4. I am triple negative and I thought that might be why. Any information would be appreciated. Thanks.
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Goldie1431 I do think being triple negative makes chemo a more critical piece of your treatment plan since you won't be able to fight the possibility of recurrence with hormone therapy.
But let's keep asking the question. Why and when are 6 CT treatments better than 4?
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Hi -I had my first treatment 4 days ago and have had a surprisingly easy time with the SEs. A little nausea, a little diarrhea, and some fatigue so far and that's it. I will have three more treatments. My question: do the SEs get worse with each treatment? I am planning a trip cross country 3 days after my 3rd treatment and wonder how feasible this is. Any advice?
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i am borderline triple negative er- pr+ (5%) and her2- i am getting 4 treatments, not sure why!!!!!!!!!!
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I'm thinking about stopping at four. Although I've tolerated them fairly well, I'm now asking the question, just because I could tolerate six, does that really mean I should do six? Would it really improve my prognosis with my particular diagnosis stats? I've had no second thoughs about opting to do chemo, but see a lot of gals with diagnosis similar to mine who are doing four. This may mean a hard conversation with my MO, but I think we can both handle that.
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Donabelle, I think that trip could be pretty hard with that timing. The side effects are cumulative. Would this be a road trip? If you go back a few pages you'll find that someone else (Runnermom, I believe) raised that question and got a lot of good feedback, although she was going to be flying.
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Donnabelle- If you are planning a trip cross country, talk to your onco about the trip about the specifics of your trip. ( whether you are flying/driving... where you are staying, etc.) I know you have been probably told that the side effects are cumulative. In my situation, I became more fatigued after each round of chemo; my heart rate was became faster and my breath shorter. I also became tired more easily to the point a short walk seemed extremely taxing on me. With that being said, please remember that the time you are travelling is during the period that your white blood counts may be dropping. You want to make sure that you have a back up plan in the event that you become ill while away. I would definitely talk to your onco about what to do in the event you do start not feeling well (high temperature, etc) while away. I don't know if you have had a node biopsy. You also want to talk to your BS and onco about the risk of lymphedema and whether you should wear a sleeve and hand glove/gauntlet when flying or going through high elevations. Please don't think that I am trying to discourage you from travelling; jsut giving you some things to think about.
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I received 6 rounds and not absolutely sure why. At my first appointment with my oncologist, she said that I would most likely have 6 rounds because of the inital pathology from my lumpectomy and the risk factors. After I was told that, I never really questioned the number rounds. Also, I'm a participant in the Herceptin B-47 Clinical Trial and if one is having this chemo regimen, 6 rounds is required under this study. I remember having this same discussion in the March/April Chemo T/C X 4 thread that I was on last year. I don't think we ever really figured out why some got 4 rounds and others got 6.
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Thank you Annie and Melrose for the replies. I had never heard of a sleeve or gauntlet so I will definitely ask about that.
The trip will be a flight with a layover along the way. My team did not seem to worry about me traveling at all. In fact they went out of their way to schedule the treatments around my schedule. Now I'm wondering if I'm crazy to do this.
I will be heading to New Hampshire and there is a small hospital in the next town if I have problems, or Boston is about 2 hours away. It's our annual family trip where I see all my siblings, nieces, nephews, etc. so I don't want to miss it. Maybe it will be bad for me physically, but so good for me emotionally.
Risk vs. reward. So hard to figure out.0 -
Melrose, back to the 4 vs 6 question, I notice that your staging and grading were a bit higher than mine and you had both a dcis and an idc tumor. I think the biggest factor that weighed into my decision to have chemo at all was my idc tumor size.
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Annie - I am doing 4 rounds and have similar stats (slightly smaller primary tumor but had multiple tumors IDC/DCIS, plus LVI). 6 wasn't even considered. When I "researched" this a few weeks ago, it seemed the conclusion/consensus was that 4 is just as effective as 6 but 6 had more SE's (some of them long-lasting). I feel like I'm doing chemo more as insurance, so 6 would be over-the-top & unnecessary. I suppose 5 would be a good compromise if you can't decide!
Donabelle, I'm only on round 2 so I can't say for sure but... I just can't imagine flying cross-country 3 days post chemo. It just sounds like a recipe for misery. I'm sure it's possible, but maybe not enjoyable? And I am having a relatively easy time with SE's. The SE's are slightly different between first & second round and the fatigue and some other things are worse/cumulative. I'd try to reschedule if you have the option, but you're right, emotional health is just as -- or even MORE -- important than physical. Any chance the family could fly to you instead?
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Its my understanding you get 6 vs 4 due to stage and lymph node involvement. So stage 1 would typically get 4. My MO said theres something to be said for doing sick, but his partner in the office said 4 was enough. Since I had no lymph node involvement and may be doing this for nothing I opted for 4.
Regbeach my paternal gma was over 70 when she was diagnosed and opted to just have radiation. She did not have triple negative though, this would be a tough call, do you have any more info like we have under our posts?
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AnnieLane- There is also another factor that may have impacted my onco's decision for the 6 rounds rather than 4 rounds. My bc (IDC and DCIS) was found inside of a cystic structure. This type of bc accounts for about 1-2% of all bc and is relatively rare. That cyst was aspirated a few days before my lumpectomy and the fluid analysis did not indicate any cancer cells. I had opted to have the cyst removed because of its size. Prior to my lumpectomy, I was told by the breast surgeon who performed the lumpectomy that it could possibly be intracystic bc but it was rare. My pathology report indicated that the ER + (90%), PR - (0%) and HER2 - (+1). (FYI: HER2 scores of +1 and +2 are considered negative in the Herceptin world.)
I met with my oncologist and switched breast surgeons so that all of my care would be handled at one location and one hospital. My case was taken before the hospital tumor board several times and so I know that the decision to have 6 rounds wasn't just a decision made solely by my onco but was discussed and analyzed by a collective of oncologists, a pathologist and my breast surgeon. I was fortunate that I was able the handle the 6 rounds of chemo with minimal side effects.
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Donnabelle- About the LE sleeve and hand gauntlet--- I did some research on the BCO.org main site as well as read on the LE Discussion forum about LE and the risk of developing it after having my SNB. It was only until I was planning a plane trip that I discovered that I might want to get a sleeve and hand gauntlet. I contacted my BS who said that he didn't think I would develop LE because of the low number of nodes removed (5) but he said that if I wanted to be extra cautious, that I could get one. So I went to a qualified LE sleeve fitter and measured and purchased an off the shelf sleeve and hand gauntlet. Yes... you need to have both because merely wearing a sleeve can cause LE. As you are discovering, patients are not told everything. However, the more one educates herself, then one knows what to ask. I know my medical team appreciates my questions because they know I am doing what I can on my end to help the process.
As for missing the family gathering, last spring when I was in chemoland, it was a tough time for me. There are events I missed because I was physically unable to do things and didn't want to risk infection. I missed my son's high school graduation and all of the fun mom events that go along with having a high school senior. It was a trade off I made. He and I both talked about my missing the graduation. In order to keep on schedule with my chemo and avoid any delays in my scheduled rounds, I opted to stay home. It was hard to see him, my husband, and daughter drive away that graduation day but I knew that I wanted to feel well enough at the end of the summer to help him get his things ready to go to college.
Again, you should make plans to go if that is what you want to do. It may give that extra mental and emotional boost to work hard to stay well while in chemoland. You know that you can always opt at the last minute to stay home if you don't feel well enough to travel. Wishing you the best.....
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Had # 3 of 4 on Friday 5/3/13. I am having some new SEs. Thumb nails have a ridge and are sensitive, acid reflux this time (with back pain that I think is from gastro issues), muscle aches, breast pain (the surgerized side), numbing fingers and the chemical mouth seems to be lasting a longer time this round. I realize the chemo is cumulative but geeze! Only 1 more to go.
My onc wanted me to have 6 treatments of ACT +T but the Arydimicin was an issue with me and we discussed it and decided that a 3% potential lower risk was not worth the potential heart issues (we have lots of those in my family and no BC in my family)
I was post-meno prior to diagnosis, so no period issues for me. (I'm 55 and no period since age 40-42).
I did not have neulasta with first infusion. Spiked a temp on day 9 and ended up in hospital for 3 days (low blood pressure sent me to ICU). I got 2 neupogen shots in hosp. 2nd infusion I got a nupogen shot on day 2 and another on day 3. 3rd infusion I got neupogen shot on day 2 only. Not sure what 4th infusion will bring...
I am hopeful that rads will be easier to tolerate.
I am forever grateful for this forum. I love the info I get here, it empowers me and that is priceless. Thank you all.
Hope all have an easy weekend!!
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Melody46,
In response to your question- my mom's tumor was 2.7 cm, Grade 3, triple negative, 0/8 nodes.
One moment I think, the side effects will be manageable, difficult but manageable. The next I read about whoever spiked a temp and ended up in the hospital for 3 days. Yes, that is manageable but it has just been a long year- 3 weeks in hospital after stroke, 5 months in skilled nursing facility for rehab. A couple ER visits for what we learned was post-stroke seizure, then breast cancer. I just need to pray for strength.
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Again, thank you Melrose and indenial. I think that I am going to go ahead and schedule the trip and then make up my mind at the time. I will hope for the best!
Melrose, I can only stand in awe at you making the hard decision to miss your son's graduation. I have my daughter's college grad coming up in June and it didn't cross my mind that I should think about that as well.
It also didn't cross my mind to think of whether 4 or 6 treatments where the best. I am maybe blindly trusting my MO? I did get a second opinion tho, and it was from a different medical group and the recommendation was the same.
So glad I discovered this forum. I am learning a lot. I feel fortunate that my SEs are not bad. Keep up the good fight ladies!
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regbeach there is a forum on here for triple negatives that may be able to give you better info, I'd also get a second opinion, its a grade 3 and over 2cm so I see why they want to treat with chemo. I understand this is also about quality of life, what a tough decision to make. Take your time, do some research and get the second opinion so you feel at peace with what you decide. I'll keep you both in my prayers.
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Donnabelle- You may want to look at your calendar between now and your daughter's graduation so you can have an idea when your last chemo and to see if going works with your treatment schedule. If you are finished by then and able to go, you definitely should try to go to her graduation. Again, you have to look at the big picture when choosing events to go to and where you think physically you will be at that point in time. I know I would try to plan to do everything and just see how I am feeling when the event is closer in time.
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