Starting Chemo June 2017
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Boy mslin, was i ever happy to read your post. I am scheduled for the same medicine as you and i am terrified . Would love to follow your progress. Best of luck to you. How are you feelung now? Also, i love that you said we can all do hard things. I've only known for 2 days that I'll need chemo so I'm still in a bit of shock. Will rely on the women like you here on these boards to help me through it. Thank you.
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Upheld. My taste buds are the same, everything just tastes bland. Even zesty Italian dressing tasted bland.
My head felt swimmy as well, not bad just not me...I guess anti-nausea meds and steroids will do that to you.
My head (hair maybe?) feels tingly. Too soon for hair loss so I am not sure what's going on with that!
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KimPossible - For some - A/C is worse than Taxol but for some, Taxol is much worse. For me, the neoadjuvant 4 DD A/C were not bad - didn't slow me down at all. But the adjuvant 12 weekly Taxol was very BAD. There is no way to know ahead of time how you/anyone will react to them.
Again how different we each are and our Dr and how they want 'things' done. My port was implanted the morning before I started Chemo. No problem at all. Some have had port implanted and then straight to Chemo.
You might want to ask if the Facility you are going to has numbing spray to be used when port is accessed, if not ask for a script for EMLA cream to put on before going so that it's numb. I've only had my port accessed once without numbing spray or EMLA (generic) and it HURT!
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I thought I'd check in and let you all know how my round 1 progress has been going. I'm currently on day 8. At last check I was on day 3 (I think) and feeling ok, but not great. I returned to work after 7 weeks off for BMX on Tuesday. I am a high school horticulture teacher. I told my students I was moving at about 1/10th the speed I normally move. When I got home that afternoon I walked almost straight from the car to my bed. I tossed and turned all night kicking myself for going back to work. It was exhausting. Wednesday afternoon I was reluctant to go back to school, but it was a 1/2 day so I figured I'd just go home a little early (which I did). By Thursday I was feeling pretty darn good. I worked with the students out in the greenhouses. I actively taught lessons. I felt great. Today we had testing so I didn't really teach, but I spent most of the morning cleaning out cabinets in my room. Today I felt human again for the first time in weeks.My side effects are fatigue on days 3-5. Very little nausea, but I'm on top of those meds like crazy. I do get super hungry. It could be from the steriods, but it also could be because I'm not filling up on junk food any more. I'll probably end up losing weight not from lack of appetite, but from eating healthy. I'm going to treat myself to cupcakes on occasion just to make sure my "boob" fund stays in tact. During my surgical consult I asked the PS if he could DIEP flap reconstruct 2 breasts with what I had. He felt around and said, "Yeah, I could get 2 B's out of that." Those cupcakes are becoming an investment!On the food front, I do have some taste changes. Salty things taste good which they normally don't always. The smell of coffee makes me gag. It smells like skunk. I had to switch to drinking tea. Water tastes like spit which is gross, but I keep drinking it. I hate flavored water. Other things that taste really good are grilled salmon or halibut, dark leafy greens, apples, carrots, salami (which is irritating because I'm a pescatarian). For breakfast I usually have a smoothie that consists of goat milk yogurt, peanut butter, 1/2 an apple or pear, frozen strawberries, peaches, blueberries and cherries. I do have to add in a bit of coconut sugar to sweeten it up a bit. On days 3-5 I had to add a little lemon juice too. Lunch consists of salami with a bit of cream cheese on it, a few slices of cheddar, carrot sticks or radishes and a small piece of smoked salmon for a snack mid-day. Dinners have been grilled fish with greens. We did have quesedillas one night and they tasted like bland hot food. I picked up some great snacks at Target. They have a simply balanced line of dried fruits that are good. I bought fruit/veggie leather, freeze dried apple slices and mixed fruit sauce in pouches. I also bought black cherry carbonated water that tasted awful. The last snack that I enjoy are little peanut butter cracker sandwiches.
FancyNancy - the shock is real, but it does get better. I didn't know I'd need chemo until a month after my BMX, but I'd told myself it was going to happen. In preparation I cut my hair in a pixie cut and had my stylist dye it rainbow colors. My theory was that I'd rather see a rainbow falling out on the counter than clumps of brown hair. It made me feel good and brightened my mood0 -
Hi, everyone - checking in again. I was supposed to start AC on Tuesday, June 6, but that's been put off while I have a CAT-guided biopsy of my spine. Apparently there's "something" there, as detected on the bone scan, and on the PET-CT scan, they just can't tell what it is. Don't know if it's cancer, don't know if it's the metastasized BC, don't know if it's a new one...
I hate not knowing, I hate that the internet is full of so many scary things, I hate that I no longer have control over ANYTHING.
My daughter graduated from college, and we planned her party for June 24, which was supposed to be Day 18 of my first round. Everyone said I would be feeling strong and "good as new" by then... and of course I have lots of offers of help. But if my start is delayed, I'll be much earlier in my cycle then, and dread the thought of postponing the party, or spending the day in isolation while the party goes on around me. I'm trying to keep everything as normal as possible for my family, but it's HARD.
I so appreciate reading about everyone's journeys - we're all so different, but so very similar at the same time. Love and healing thoughts to all.
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Hello everyone, I am starting adjuvant chemo on June 23rd, 4 rounds of Taxotere and Cytoxan every three weeks so I should be finished in late August. I have a good friend who went through it about two years ago so she has been giving me good advice including the icing for the hands and feet. I thank all of you for all of the tips. It is good not to feel alone.
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Upheld...
It looks like we are pretty close in the type of cancer we have .... only I'm stage 2A due to my tumor being smaller ..its 1.7 at the widest...
I will be starting the same treatment and meds as you are on May 16th....
Hugs... we've got this ...
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Hi folks, I'm joining in this thread since I will be starting AC+T in the next two weeks. I had my BMX with DIEP reconstruction on 4/21 but blood supply problems meant it had to be removed again 3 weeks later; I will redo the reconstruction after chemo/radiation is done, probably next January or so. The tummy incision has been slow to heal which is why I haven't started the chemo yet, but I'm possibly getting my port on the 8th or else on the 16th based on doctor availability. Then I would start soon after that. I am doing Penguin cold caps and having someone from Penguin come for my first treatment to help us learn how to do it, so I have to be able to give them a little notice. . .it's hard to schedule when you don't have a date yet. :-) Anyway I have been reading through all the great info on these boards and appreciate it so much. I am going to make every effort to contribute as much as I can!
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Kicks, Thanks for the advice about numbing spray! I also was advised to take some hard candy with a strong taste to try and mask the taste that apparently the chemo produces in your mouth. I was advised if it was a flavor you like, such as lemon, you may have a challenge later enjoying lemonade, lemon bars etc. Since I hate licorice, I was thinking I would do something like that, since I wouldn't miss having it later. The main thing is to get through each treatment - one at a time.
Hugs to us all!
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Hello ladies! I thought I had entered a post, but it's not showing up, so if this is a repeat post, I'm sorry!
I had my first TCHP infusion on Tuesday, so this is day 4. I have been doing really well! My major side effect has been indigestion and no appetite. I have been taking Zofran every 8 hours round the clock until today as a prophylactic to nausea. My doctor advised that, as he said that if you get nauseated in the first round, you usually predisposed yourself to get nauseated from there on out. Zofran does constipate, so you have to be careful about that. Today, being the first day without the Zofran, I had some diarrhea which I understand is a side effect of the Perjeta.
I took the Claritin the day before chemo the day of chemo and took my last dose yesterday. I have had some aches but am used to it as I have bad joints and arthritis to start with. I and keeping Motrin in my system as I have bad joints and arthritis anyway.
I find if I am not keeping food in my stomach, I feel badly. I normally love sweets but can't stand anything sweet now. I can't even put jelly on my toast! I'm not complaining, it's probably a good thing! So I am experimenting, trying to find food that sustains me as I have no expectation that it's going to taste good. I'm taking Zantac twice a day but still have this indigestion. I'm definitely going to talk to the doctor on my appointment next week about the indigestion and see if he has any suggestions.
I've been drinking water constantly and I think that has really helped as well. I just don't feel like myself. Just strange. I know that each of you understands. We're going to have to find a new normal.
I was on a steroid high for two days and ended up doing too much. Yesterday, day 3, I paid for it. Didn't feel well all day. I am much better today.
Any suggestions on indigestion and foods to try would be much appreciated! Protein seems to be the best and stays with me the most. I am so blessed bye each of you!
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My friend who went through this said icing hands and feet helped her not to experience this.Also massage of feet with lotion. Here is what my friend said:
"If you use ice on your fingers and toes, you will minimize the damage, as it prevents the meds from getting that far, as you are numb and your blood won't circulate very well. It makes for a miserable six hours, but saves you months or years of collatoral damage. I ordered really expensive chemo gloves, which I used on my hands. I put my bare feet in a dishpan sized tub of ice water. I wrapped up in lots of blankets, and teh nurses were very kind about giving me warmed blankets. In addition to making you cold, it also makes it impossible to do anything for yourself while you chill. I always had a chemo buddy to keep me company, change the channel, feed me ice chips (to prevent mouth sores) and wait on me hand and foot.
I believe it was totally worth it. Many of my Pink Sisters have reported blackened nails, loss of nails, and very uncomfortable mouth sores. My oncologist always commented on how well I had done. The only damage I suffered was to my right big toe. It's been two years. It hasn't grown at all--but it hasn't fallen off, either. I think I got off easy."
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Upheld - I too had indigestion and that never happens to me. I talked with my nurse about it and she said it is a side effect of the steriods. Mine subsided around day 5 or so. She said just take an over the counter like Zantac or Pepcid and that should help.
On the food side, I'm not sure how to help there. Things that taste good to me are grilled fish and dark leafy greens. Salami with cream cheese also tastes good. I wouldn't normally eat that since I'm a pescaterian, but I'm making the calories count. Carrots also have been quite tasty. Keep trying things until you find something that you like. For me most everything is quite bland.
Oh! I did discover cranberry juice with a little club soda mixed with it tastes delicious! That was tonight's win. It's actually a funny story to go with. We went to a Japanese Steakhouse for our goddaughter's birthday. I ordered the cranberry juice with club soda instead of the glass of wine I'd normally order. The kids ordered shirley Temples. It's prom season so the restaurant had pitchers of Shirley temples to refill kid's drinks. They kept offering to fill my drink with Shirley temple too! I thought it was f
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Upheld. Feeling the same way as you. As long as I keep a bit on my stomach I am good but, I do have a bit of indigestion. Baked chicken tastes okay, toast with butter, a bit of mac n cheese. I had some nuts, there go the indigestion as well as when I drink juices. I have been trying small bits of foods suggested by our group and I it's a little better now. Had my first chemo Wednesday and am tired. tired. tired. I did get up, take a shower, did my devotional and ate, for me it is necessary for me to at least try to remain normal. My new normal for now.
Everyone, WE CAN DO THIS!
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Hi everyone. I just joined and am feeling super frustrated at the moment. I had a bilateral, nipple sparing mastectomy on 4/13. I ended up with extensive necrosis, so PS did revision on 5/2. I had lymph node involvement and will need radiation. My oncotype came back at intermediate risk, so they are recommending a 12 week cycle of taxotare and cytoxan. I had a port placed on 5/16.
Now for the frustrating part, PS keeps delaying start of chemo due to lack of healing from the second surgery. So far he's delayed twice. Right now, I am scheduled to start on Tuesday 6/4, but see the PS on Monday. I am so scared he will delay again as I still have pretty bad scabs on both sides. I feel like I've prepared myself for everything, and I just want to get started so I can get it over with. Anyone have a similar experience or any advice/words of wisdom?
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I had my port placed and my first treatment with AC on Friday June 2nd. The nurse gave me too much sedative for the portplacement so a recovery that should have taken 30 minutes took almost a 2 hours. I was throwing up and felt terrible. I managed to come around and then I had to go to a different building about 10 minutes away to have my first infusion. The infusion went well but the ride home sucked. I live about an hour away and the whole time felt nauseated, and very jittery. I don't know if it was the chemo or the steroids or just the combination of not having eaten, port, plus infusion all in one day. Yesterday I was a little better and today was able to eat whatever. I am still a little tired but was able to bathe, play with my kids a little and able to get up and fold a few clothes. I'm hoping my next appointment goes a lot better.
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HapB, I completely understand what you mean about reading too much! My husband keeps saying, "you really should get off the computer". . .I can get a little obsessive about researching things. Sometimes I think you just have to stop yourself and go do something else.
Eschofi, I am having a similar experience to yours with necrosis/revision/delaying due to wounds not healing faster, and feeling that frustration as well: let's just get going already!! I'm also seeing the PS again tomorrow to see whether he thinks I can get my port this week or not until next week (I hope not any later than that). It is a weird feeling to be anxious to start something that I am apprehensive about.
Now, I am going to go watch a movie and not read any more today! :-)
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Thank goodness that I found this support group and I appreciate all of the advice and info that you friends are sharing. I was having shortness of breath and some tightness in my chest. My father, and best friend, died at the age of 63 back in 1988 of heart disease so I wanted to have some test ran. My mother will be 90 years old in August and I did not want to worry her...so I did not tell her about the heart issues or that I was going to have a stress test until I knew if there really was an issue. My cardiologist instructed me to have a stress test. I decided that since I would need off work for 4-5 hours that I might as well make a complete day of fun and have a mammogram. I was getting mammograms about every 1-2 years as I had no problems before. I called my Mom from the Mammogram office as I knew she might call my work and be worried if I wasn't there. I didn't think a thing about telling her that I took off to have a mammogram, thinking it would be a non issue. The stress test came back that I do have a high risk of heart disease and they put me on 2 kinds of heart medicine...but I had no blockage, Praise The Lord. The next day I received a notice that my mammogram results were abnormal. From there I had another mammogram with an ultrasound and a few days later a needle biopsy. I received the news that I had invasive ductal carcinoma on Thursday, April 27th and had surgery scheduled the following Friday, May 5th. My surgeon did a fabulous job with removal of the lump which was 1.4 centimeters with clear margins and there was no cancer in my lymph nodes. However, that nasty HER2 was positive and my cancer was a grade 3 so it was very aggressive. My oncologist said that had I waited 6 months, my cancer would have probably been stage 4 and in my lymph nodes. I have made peace with the diagnosis and I am not mad at all...but still really sad and scared. The unknown is what is scary to me. I think I have also made peace with losing my hair..but I have always been known for my "big" hair as I refuse to let the 80s go all together! :-) I get my port put in this Tuesday and will have my first chemo on June 14th. I will have treatments every 3 weeks for 6 times. Radiation will start October 17th for 16 days and then a year of Herceptin infusions. It is going to be a long road but I love my life and am going to fight every single day and pray this journey will be a distant memory and I will only come out stronger than before. I have an awesome husband (who lost his mother to breast cancer), my sweet Momma and a wonderful group of friends who are my prayer warriors and such an awesome support team. Actually 3 of my best friends and co-workers have been though cancer and chemo within the last year or 2 and have held my hand many times when the tears started to flow. SO many people are affected by this ugly disease and I will continue to pray for them as I will for you all in this group. We WILL beat this and hopefully pay it forward and share our success stories and be there for those who need us just like our friends...and even strangers have been there for us. Much Love to you all.
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Eschofi, chemo prevents your body from healing, so the PS probably doesn't have any choice but to wait until you have healed
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Hello Everyone,
Good to see new peeps coming in an introducing themselves :-), and big shout out to those who have started and are sharing their experiences. Overall, it sounds like the treatments are going ok (yes)?
Re: food/indigestion, if helpful - my friend told me she always kept crackers by her bed, and even if she woke at 6am feeling a little off, she ate a couple of crackers and went back to sleep and it helped so that she always had a little something in her tummy.
eschofi - as lrwells50 mentioned, chemo (and some of the anti nausea drugs too) slow down healing. I am 10 weeks post op, and I was adamant that I wanted to go as late as the onc said that we could wait, because I know if I'm really not healed when I start chemo, then that's a potential big problem with healing. It's frustrating, but better to have healing. I was seen by a specialized woundcare nurse (not requested by my PS which was frustrating, but by homecare nurse), and started seeing improvement. It's still been a slog, and I'm glad I was able to wait. It's not perfectly healed but around 90% which is TONS better even from 3-4 weeks ago.
!!!! In other news, I start my first chemo round (FEC-D) on Tuesday and would love some encouragement and any words you all may want to share. In the past week, I've prepped some food with a friend, we created a beautiful garden on my balcony and I'm finishing up all my pharmacy shopping so I will have the mouthwash, toothbrushes, moisterizer, eye drops, etc....But I am nervous, and unsure. Of course. I'm going in without a port and am hoping I have no issues with the 'red devil' and that my veins stand up. If not, we'll likely move to a pic line. It's been a long time it feels to get to this point and it's scary, even though I'm feeling 'ready' in terms of having the things I need...
Limonia,
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Thank you moodyblues for understanding and offering encouragement. You mentioned eating nuts and drinking juices - did they make your indigestion worse? Thank you again for sharing. I am sending positive vibes to you and all of us.
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should I take this poison in my vains? I went to fox chase in Philadelphia because my oncologist did not know how to treat me, I had a mastectomy on march 27 2017 had a 2.7cm tumor triple negative positive and one1cm tumor her2 positive no nodes involved, fox chase said if I do no chem I have a 80% chance it won't come back, with chemo the number goes up to 90% should I take it for just that 10% difference? All those chemicals that can cause problems later on in life.The regimen they suggested was ac dose dense ac weekly, then taxol hersptin perjeta 12 times every 3 weeks, then herceptin to end the year, What should I do?
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Lils The nuts didn't cause indigestion, but mango juice did. Grape juice went ok, no indigestion. I had some OJ and it tasted good. I was able to eat a full meal last night (mashed potatoes, baked beans and a small piece of steak)! I have found that pnut butter crackers, pnut butter toast etc., works well!
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Debbs We all wonder the same thing....should we infuse poison when we've already had a MX or a LX? I personally feel that they took my breast, the PET scan was clear, nodes were clear, what should I do? what am I doing? In fact Hapb questions the same thing as well as others on this site. When you're looking at percentages and recurrences and all of the other variables, I don't know. At first I said "no", then I researched Her2 and decided to do chemo because it's a wonder drug. Even now after my first treatment, I question what the hell am I doing. In one of the forums there was a pie chart/scale where you put in all variables and it will tell you more, that may help.
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Debbs you should do the oncotype Dx that test will tell you the correct parameters to see if you need chemo or not. I was like you why ? Everything was clear i feel perfect. I just received the oncotype last week and it comes to intermediate risk so here i am i start next Wednedsday. Check that test in this site you will understand better. My best wishes for you. ! And for everyone in this Cancer journey.
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Has anyone had continued cramping (abdominal) pain? Sort of like when you have cramps from diarrhea or constipation? I have moderate cramping, stools not loose but not tight either. I wake up with it at night. I have been taking 1/2 of my anti nausea meds because of a tiny bit of queasiness. This pain is not severe but uncomfortable. Any tips?
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MsLin, I love the rainbow idea! I have never colored my strawberry-blonde hair at age 49. You betcha if it comes in gray after I lose it, I will be willing.
Upheld, How encouraging that you are starting out feeling so well! Keep us posted! Water is essential through this I would imagine, and I have heard to stay ahead of the nausea by taking the meds as prescribed, not just when it hits - then it is too late, perhaps. Stay strong!!
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Good morning ladies! I think my Nemesis on this journey is going to be my stomach. I go from constipation to diarrhea to indigestion to acid reflux. I'm just trying to find what will work. A couple of things I think are important is keeping food on my stomach and balancing Imodium with Zofran. Yesterday, for example, I had eggs and toast, chicken and noodles, cheese and crackers. All went down and felt great. I wanted something cold and creamy. I tried a popsicle but it was too tart. I tried a little bit of vanilla ice cream and it tasted good. So I waited a while and tried yogurt with strawberries and blueberries. I've been eating that for the last couple days with no problem. Boy did it set off my stomach! I felt nauseated, I think it's not acid, and rumbly and burpee. I had three episodes of bad diarrhea and took Imodium after them. But t in the evening, I took some zofran. I don't know quite how to get a handle on this.
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Upheld. I feel you. Pre-cancer, I never had problems with indigestion, burping or reflux, now I do. I, like you feel it's important to keep something in my stomach (I feel better that way). I feel cramps in my lower abdomen which wakes me up at night.
I don't have uncontrollable pain (1 Tylenol does it) but, my ears ache, jaw/teeth ache, my absent breast aches. Weird how those places are worse than the joints.
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Hi, everyone!
I had my first round of TC last Friday. Feeling kind of cruddy today, but I've read that Neulasta can cause flu-like symptoms -- also, today is kind of gray and yucky, so that could be part of the issue. Infusions of both drugs went fine: taxotere, then cytoxan. I used two bags of frozen peas on my toes with a towel wrapped around them and two bags of frozen peas around my fingers with another towel during the taxotere infusion; I, also, sipped some water with ice chips. My entertainment during the infusion was an audiobook called "The Brand New Catastrophe: A Memoir." I am not very far into it yet, but if you like a dry sense of humor, I recommend it. Each infusion was an hour long and I was sent home with my Neulasta pod gift. The only discomfort I felt during treatment was my heart pounding a little bit. It wasn't super-uncomfortable, but I was definitely aware of it.
I had some pretty awful heartburn the evening after my treatment, but it went away after about an hour. I didn't feel too bad after that until Saturday evening, a couple of hours after the Neulasta pod released its medicine. Since then, my scalp has felt kind of tender, my throat has been a little sore with slightly swollen lymph nodes, I've had an occasional cough and general yuckiness -- nothing that has kept me from any activities, though.
I've stayed ontop of my Dexamthasone, but I'm trying to avoid the Prochlorperazine, because of the constipation risk. So far, I haven't had a lot of nausea (I've been wearing Sea Bands on and off. I'm not sure if that is why.), but, also, not a lot of appetite. A friend's mom (who was an oncological nurse) made me some beef bone broth and beef tea (I had no idea that was a thing.), so I'll probably heat some of that up in a bit.
Hope everyone is doing well today.
SpeedyTeach: I'm glad that the dental advice helped. I know it's nice to have one less worry during all of this!
JuliaJazz: Looks like I will be receiving my second round of TC the same day you'll be receiving your first!
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Good morning Rukoni! Read about your using peas to ice. We ruled them out as they don't stay cold enough for 1 1/2 hours (15 minutes before the infusion, during the infusion, and 15 minutes after). I used hot pads with opening's on the top that were perfect to slide my fingers down in, wedged between sandwich sized baggies of ice. You need to ice both the top and the bottoms of your fingers. For my toes, put ice in quart bags on the bottom and top, put my feet in gallon size bags and taped them on. We changed out the ice along the way, when it melted. Also, chomped on pure ice in my mouth. Just wanted to make sure you were keeping everything frozen cold....
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