• Starting Chemo

    Asked by AlexisJ on Friday, May 19, 2017

    Starting Chemo

    I am getting a port put in on Wednesday and will start chemotherapy the following day. I am distraught and don't feel like myself. My emotions are everywhere. My whole summer will be spent isolated due to risk of infection. I am not sure I can handle this. Any suggestions?

    29 Answers from the Community

    29 answers
    • BabsWon's Avatar
      BabsWon

      Been through this and took it one day at a time. Always felt they took good care of me at my clinic and I continued to work through chemo & radiation. Tried to have infusions on Thursdays because by Saturday I was wiped out, but by Monday felt good enough to go to work. Drink plenty of water, exercise (even a little helps), try to keep food in your stomach (not spicy). I received Neulasta shots after each chemo and never isolated myself. I was extra diligent with hand washing however and did not get any infections. If you have a lot of trouble with anxiety, you can ask for an antidepressant (others here say that helps). I know it's not easy, but I always felt I would do anything to get through treatment so I could be rid of this disease. Best of luck.

      4 months ago
    • Carool's Avatar
      Carool

      Hi, AlexisJ! I, too, didn't get any infections during my four A/C infusions, and I didn't stay isolated. Avoid movie theatres, obviously, and other places where large groups of people congregate for hours at a time. I worked throughout my chemo, took subways all over, and was fine. Not at all fun, but you'll get through it, and I hope without feeling too bad. The anti-nausea meds are better than when I had chemo almost two decades ago, and even then I felt queasy but not actively nauseated except for two separate times.

      Wishing you all the best -

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi there, AlexisJ! You can do this!!!! There are millions of us who have, and so can you.

      Having emotions all over the board is perfectly understandable. You have been diagnosed with cancer. That's scary. And, yes, your life will never be what it was before that diagnosis. It might be just as good, but it will be different. That's scary, too.

      But, once you get your port (smart choice) and go through a chemo treatment or two, it won't feel so new and scary. Everyone is different, but my blood levels didn't tank. I was able to work, go on daily walks, go to agility classes with my dogs, and even go to agility trials in horse barns while i was getting chemo. It wasn't easy, but it was doable. (Some people do have to be more careful. You will be closely monitored. You will know what you can do.)

      Be sure to come back here with questions as you go through this experience. You have lots of support here from people who have been there done that. We can help you.

      Good luck. YOU CAN DO THIS!!!!

      4 months ago
    • IKickedIt's Avatar
      IKickedIt

      Have you been told you will need to be isolated all summer? I had 12 rounds of chemo over 6 months and continued working as a teacher (computer teacher...yes, a very germy job) and living my life with as much normalcy as possible. There were only two times when my counts were low and it was recommended that I relax and stay home for a few days.

      I was as cautious as I could be. My students had to "goop" (Purell) when they walked into the computer lab and after they sniffled or wiped their noses. I had goop at my house and my kids' friends had to goop when they walked in the house. I had goop in my car and in my purse and I'd clean after touching public pens, door handles, shopping cart handles (which I tried to always wipe down before I touched). I never got sick which was pretty amazing since I worked with students from 3 years old through middle school. Lots and lots of germs.

      I didn't want cancer to affect my life or the lives of my loved ones any more than absolutely necessary. I maintained as much normalcy as possible. I went to the movies, I went to the ballgame and even the shore (in the evening, though, in order to stay out of the heat and direct sun).

      We were all anxious and scared to death of our first chemo treatment, and that's perfectly understandable. See how your first treatment goes. You may be surprised. You may have some side effects while not others. You may feel good for the first few days, then lousy for a few days and then good again. Keep a journal. In general, most of us figured out the pattern, the cycle. Once I knew which days were going to be my "down" days, I scheduled life around that. I planned to lay low, stay home, sleep on those days.

      Good luck with this first treatment and let us know how you're doing.

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      It may not be as bad as you're expecting, but talk to your doctor about your feelings, because he or she may want to prescribe you medicine for anxiety (not the same as an anti-depressant), especially before your first visit.

      Remember to keep talking to your doctor about how you feel, because they have remedies for you. Best wishes.

      4 months ago
    • Anniekell's Avatar
      Anniekell

      I found that when I was diagnosed everyone wanted to rush me too.... Into chemo, into surgery, into getting a port. But that's not how I do things and I had to make it very clear that the rush rush rush wasn't going to work for me. I have never had a port and my oncologist and I negotiated on when and how many and how much of any procedure or drug or test and we go at my pace - not some arbitrary schedule mostly predicated on fear. If you're not ready for the standard of care treatment you need to push back and make it clear what YOU find acceptable and what YOU need to feel better. Medicine that makes you feel sicker than you are isn't medicine and the initial tenet of the Hippocratic oath is "first, do no harm." I believe that the standard approach does lots of harm - including the rush rush rush approach - and you are the only one who can truly know your own dear body.

      4 months ago
    • msesq's Avatar
      msesq

      Depending on what chemo you are on you may not need to be isolated. I was on TCH, had a Neulasta shot after chemo and was able to work through treatment except for 5 days after each chemo. Ask your oncologist about Neulasta and what else you could do to avoid isolation. I even went to a 4 day conference attended by over 1,000 people without a problem

      4 months ago
    • suemartin's Avatar
      suemartin

      I was going to mention the Neulasta shot as well. I had no major problems, worked full time all through chemo.

      4 months ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      I too had chemo during the summer but was not isolated. In fact, my pastor insisted I come to church whenever I could to prevent me from getting into the habit of extreme hybornation. I took precautions: Neulasta shots, wearing a mask and gloves when cleaning out the cat box, resting a lot during my first week and doing gentle exercises and activities when feeling stronger. I think that I missed only 4 church services during the entire 5 months I was on chemo or having surgery. The only bummer was I had to skip out on a vacation because my mother thought I wouldn't be strong enough to really partake and enjoy the attractions. Remember, we're all here for you. HUGS and God bless.

      4 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Unless your doctor tells you you HAVE to be isolated, just take precautions. I also worked through chemo, although unlike KickedIt,, I work w/adults in an office setting. Although that can be worse...at least kids don't get offended when you tell them to keep their cold germs away from you! Other than treatment & appointment days, I missed 2 days of work throughout chemo. Didn't get a cold until after I was finished (go figure!). And if your doc insists on isolation, make sure you have your computer, tablet, cell phone so you can stay in touch w/family & friends (and WhatNext!). Yeah, it stinks to have to go through chemo. I can only imagine during summer, as I started in Sept & finished in January. But as Barbara said, it's likely not going to be as bad as your imagination is saying. I was scared to death going in. But even though I had a couple of problems, it was seriously not the end of the world. Orthopedic surgery & recovery several years ago was worse than chemo. Good luck!

      4 months ago
    • Jouska's Avatar
      Jouska

      Chemo is not fun, but it is survivable. I, too, worked, traveled, went to the barn (have horses) and was cautious - I really washed my hands a lot, but tried to keep my life as normal as possible given the circumstances. Not sure what kind of cycle you will be on, but mine was 3 weeks (TCH plus Perjeta as I am HER2+). The first week was rough and I typically worked from home, second week better and third week much better. Drink lots and lots of fluids - it will help mitigate the effects of chemo especially that first week. 64 oz a day of water, gatoraid, fruit juice etc. Caffeine doesn't count/help. My white counts got very low, but I was never told to be isolated. Yes there will be an impact and no, you will not feel normal or even good, but as others have said, one day, one week, one cycle at a time. Hugs.

      4 months ago
    • Nanzee's Avatar
      Nanzee

      What a collection of good answers! I found this site a year ago, when I was starting chemo and feeling much the same way as you. I referred to it often, with dozens of questions, from loosening fingernails to food tasting funny, and always got lots of support. Now I am finished, my only challenge is reconstruction, and I'm enjoying my summer with a cute short haircut and renewed energy, and a trip to Europe planned for August. I did stay away from young children (it seemed like my youngest relatives always had colds) but met often with my friends and older family members, and never got a cold. I tried to look at it as a year of hard work, which it was, and of changes, but the things I feared most did not happen. A year from now it will be over for you, too. There are answers here, and friends, so keep in touch!

      4 months ago
    • SuSudoggie's Avatar
      SuSudoggie

      Hi Alexis! I don't know how old you are, but no matter how young or how old you are, you have a wonderful life ahead of you!!!! I am a seven year survivor. Have seen three grandchildren born, gotten married and enjoying my new normal and life!! Treatment took two years, but now it's over and I'm enjoying life! You can do it, cuz you have a lot to look forward to and enjoy!!!! God Bless you!

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      P.S. When I'm afraid of something in the future, I remind myself that if other women can do it, I can, too!! (That's gotten me through several scary things, like childbirth.)

      By now, you've had your first chemo, so let us know how it went! Best wishes.

      4 months ago
    • Marinace's Avatar
      Marinace

      You have many friends to support you on this site. I believe most of us had the same feelings when we started this journey. Ask questions, don't worry, there are always answers here, as well as support. Hugs!

      4 months ago
    • Lindy's Avatar
      Lindy

      Yes you can. This is about your life and the loves in your life. Yes you can for each other.

      4 months ago
    • Nanzee's Avatar
      Nanzee

      You willl come to love your port. It is a little bothersome, but it means your veins will be intact, and it makes the whole process, including some diagnostic tests (MUGA scans, etc) so much easier. My oncologist wants me to keep it in for one more year, and I agreed. He said he's just superstitious, but I think if anything bad is going to happen, it's most likely to happen in the first year. That's something I heard somewhere else. I get it flushed every six weeks, and it gives me a chance to go back and visit the nurses and discuss anything that has come up since my last time there. The only part I hated was the healing after the surgery. You are going through that now, probably wearing sticky plastic sheets to shower. Good luck, and stay in touch!

      4 months ago
    • cllinda's Avatar
      cllinda

      I had mine during the winter, so I really was isolated, because it's cold and flu season, too.

      So I only went out for doctor appointments and things like that. We have to be so careful if going out during treatment. Use hand sanitizer often. A mask might help, too.

      I didn't go to church for months, and I had communion brought in on Sunday mornings if I was up to it. They usually called the night before but a couple of times, they didn't and I had to turn them away because I was sick from the chemo.

      Also, listen to the nurses. I hope they gave you a sheet of information that helps explain things, and when to call the office. Never hesitate to call if you develop a fever, or something else. Even on weekends and nights, most doctors have answering services and they can tell you what to do. Sometimes, it may be an early appointment in the morning for fluids, or a trip to the ER, Listen to what they say.

      Also, because cancer of any type can be hard to understand, bring someone with to doctor appointments. When I started, I brought my daughter with me, and she took notes so we could look things up when we got home. The doctor even spelled some of the words for her.

      Good luck as you start this part of the journey. And I thought my port was wonderful. I'm a hard stick, and I was so happy to get this device implanted so I wouldn't have to get stuck more than once. And they even have sprays and creams that they can use to numb the port so there is no pain at all. It's a great thing to have.

      4 months ago
    • Ejourneys' Avatar
      Ejourneys

      I had chemo all during the summer three years ago. I didn't need to isolate myself, but I did avoid large crowds. For example, I ordered various items online rather than shop at the mall.

      I posted the following a while back on another thread (I've updated it a bit):

      The first infusion is the scariest because each of us responds differently and we don't know how our bodies will react until we've gone through that first chemo. But after that you pretty much know the drill. Also, chemo nurses are *awesome*.

      The way that I prepared was by getting a bunch of stuff that I *might* need, figuring that it's better to have and not need than to need and not have. This included:
      -- Colace for constipation (I did have constipation especially after the first infusion, but a smoothie with prunes, banana, applesauce, and yogurt did the trick; later just prune juice helped. I never needed the stronger stuff);
      -- Imodium AD for diarrhea (I didn't have diarrhea, so didn't need it);
      -- earloop masks in case my immunity dropped (these helped when I took my partner to doctor's appointments; I also wore them when I had nosebleeds from Taxol because they kept my nasal membranes moist);
      -- a reading pillow with a high back and arms (helped tremendously; sometimes I had to sleep partly upright);
      -- light cotton long-sleeved button-front shirts (I had chemo during the summer in Florida and was very sensitive to sun from the chemo; the button front let the nurses access my port);
      -- baby wash (for the shower, since my skin was very sensitive under chemo);
      -- trays for making ice chips (in case I had trouble drinking water; I was fine there);
      -- water bottle (my constant companion!);
      -- hand sanitizer (both at home and to carry with me; this is a must);
      -- what I called "chemo food" -- bland, soft, sweet stuff like peanut butter, bananas, yogurt, soft bread, etc., plus ginger tea, which helped with my queasiness. Later I craved saltier foods. Taste preferences under chemo can turn on a dime.
      -- I also ordered chemo caps in advance for when I lost my hair. I ordered from TLC (http://www.tlcdirect.org/) and Hello Courage (http://www.hellocourage.com/).
      -- I got Rx-strength Clinpro 5000 toothpaste and extra-soft toothbrushes from my dentist. In the bathroom I also had salt and baking soda at the ready in case I needed a sore throat gargle (I didn't).
      -- I also prepared a first aid kit to carry with me that included band-aids, gauze, tape, and Neosporin. I didn't need to use the kit, but the Neosporin came in handy when a spot on my bald head became inflamed.
      -- Skin can get dry during chemo, so I also got Vitamin A&D ointment and Curel Intensive Healing lotion. I didn't need them during chemo (I kept myself very well-hydrated), but they came in handy during radiation.

      My partner came with me to my first two infusions, in case I couldn't drive home. But I was fine. (She has MS and was really better off staying at home.) The American Cancer Society has a Road to Recovery program for people who need lifts to treatments. My cancer center has a separate waiting area for people accompanying patients because the chemo bay can be very active.

      I blogged about my chemo in detail. This entry describes my chemo bay and the infusion process:
      http://csn.cancer.org/node/276484

      I made sure that on my good days I did my errands and got enough food etc. to tide me over for several days after each infusion. (I had infusions on Thursdays. With Adriamycin/Cytoxan I napped after getting home, went back the next day for my Neulasta shot and then stayed home, was really down for the count on Saturday and Sunday with lots of naps, started feeling a bit better on Monday, and felt good enough to venture out again on Tuesday or Wednesday. With Taxol I was pretty much fine throughout. I got A/C every 3 weeks, Taxol every week.)

      I posted what follows on another thread while still in treatment.

      This is what helps me:

      1. Drinking plenty of water, including the day before chemo. It helps flush the toxins out and helps with some side effects like constipation. I drink at least 10 glasses of water/day, more on infusion days, because chemo can be very dehydrating. I'm practically surgically attached to my water bottle.

      2. Keeping track of side effects (mine have been mild all told; I hope yours are, too) and communicating them to my medical team. One of my SEs was heartburn; my ARNP prescribed Prilosec, which solved the problem. I give my team a weekly SE report modeled on the chemo worksheet here:
      https://www.cancer.org/treatment/treatments-and-side-effects/tools-to-monitor-treatment.html

      3. I tailor my chemo bag based on the suggestions here:
      https://www.whatnext.com/blog/posts/be-prepared-22-things-to-bring-to-chemo
      https://www.whatnext.com/blog/posts/things-to-bring-to-chemo-part-ii

      4. Eating healthy food and exercising have helped me tremendously. They boost my immune system and the endorphins from exercise are great for my mood and help fight fatigue. That said, I take naps when I feel the need. I listen to my body and cut myself a lot of slack. I also focus on doing what I love as much as possible and on living in the moment.

      5. To protect my immune system, I stay away from crowds as much as possible, since I don't want to risk coming into contact with anyone who has cold or flu. I also carry hand sanitizer and wash my hands with soap frequently. Additional precautions are in this document:
      https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/infections.html
      Johns Hopkins has a great guide for people who are immunocompromised from chemo. See p.114 at
      http://www.hopkinsmedicine.org/kimmel_cancer_center/patient_information/education/Patient-Guide.pdf

      I was plenty nervous before my first infusion -- visiting the chemo bay isn't the same thing as actually sitting in the chair. But after the first time I knew the drill and I also knew how my body reacted. My cancer center gave me a chemo teaching sheet (I posted it at https://www.whatnext.com/media_posts/45530) with advice on how to deal with various side effects. Since I had no idea what to expect, I prepared for as much as I could with OTC remedies. I also made sure I had various types of food in the house, since I didn't know what my appetite would be like.

      These days they give pre-chemo meds that really help decrease side effects. Don't be afraid to ask questions of your team and let them know about any discomfort. (As my oncologist's assistant told me, "People are afraid they're seen as complaining, but they're not.") Chemo nurses have seen everything and are terrific.

      Good luck. You've got this!

      4 months ago
    • Nanzee's Avatar
      Nanzee

      Wow, that is a comprehensive guide! Wish I had been so prepared. But I'm like AlexisJ, it all happened so fast. My infusion clinic gave me many of the supplies you listed, though. I took my Neulasta home with me and injected myself 24 hours later--it was a no-sweat thing.
      I wish I had known to soak my fingernails in ice water during chemo. That might have kept my nails attached. They have still not grown out normally, though they are better. I don't think you have to ice them constantly, just until it becomes uncomfortable.
      I also took an antiviral during chemo, because I had three attacks of shingles prior to this. One was a mild case, but it was two years after I had gotten the vaccine. So be aware of any pain that follows a nerve pattern, even if there's no rash. One woman on this forum had unrelenting pain during radiation that was later diagnosed as shingles.

      4 months ago
    • Ydnar2xer's Avatar
      Ydnar2xer

      Hi Alexis! First of all, RELAX if at all possible. I too, had all sorts of apprehension the days before I started chemo. Mostly, I was afraid I would throw up! (Never did; Doctors now are very lenient with the use of nausea drugs, so generally, NO BARFING! ) I am a 2x b/cancer woman and about 5 years past my chemo. Looking back, I can honestly say that going through chemo is one of the events in my life of which I'm proudest. I DID IT! And you can, too! Be good to yourself--take naps, meet with (healthy) friends to talk, treat yourself to a cozy blanket,some good snacks, music, magazines & crossword puzzles to take along in your "chemo tote bag". I kept my chemo bag in the hall closet where it was always ready to go. I was treated with TCH and every third week I felt BAD like I was coming down with the flu for about four days--and there were some unpleasant side effects like having my nose dry out, etc., but it wasn't NEARLY as awful as I had imagined. Please keep in touch with us; maybe we can help you stop worrying so much about it. YES, it is POISON you will have running through your body--but MANY of us have done this---and because of this poison
      , MANY of us are still alive and kicking it! Trust me, YOU CAN DO THIS! We are on the sidelines here, cheering for you all the way! I'm sending good mojo your way, Alexis! Take care!

      4 months ago
    • Mimi19501's Avatar
      Mimi19501

      I was diagnosed with HER2 Breast Cancer in Dec,2016. My first Chemo was 02-13-17 but along with that my husband had to have a
      "Open Heart Double Bypass Surgery" on 02-14-17 the next day. I debated rather to have My 1st Chemo but I ask the Surgeon and he suggested that I don't cancel it cause my husband would be taken care off. So I went through with the treatment and was not their for his surgery. My daughter Facetime me with him before he went in. I am now going on my 6th and final Chemo next week and the break for 4 weeks the Radiation for 6 weeks (5 days/week) Will be over in mid August but still have my Herceptin Injection till February 2018 and then my follow ups from whenever.
      I was a nervous wreck, crying, emotional but my daughter was then and now a great help. I took it one day at a time but my sister was diagnosed with Ovarion Cancer 7 years ago but now it's just a matter of time she has left. She fought a strong battle and always had something go wrong but she was a survivor and has husband that would not leave her side. I believe that's what gave her the strength she needed the whole time to keep going. She gave alot of advise and I found it very helpful. Be sure and listen to the Dr cause I've already experienced twice what the Dr says and what the nurse says and it's two different stories. To me I think it's better to have someone go with you to listen just in case you don't catch it all the other person can. It's a lot of processing to deal with and it can be difficult at times. Be sure to keep a daily record if needed. I dipped my hands and also sucked on ice during the 4 hours of treatment and on the 5th I didn't. I noticed my fingers and feet were numb and no taste. It keeps it from going to those areas. I also take 3-4 days before treatment Clariton about 8-9 days straight to help with body flu like symptoms that I never got but with the first treatment which I only took it off 5 days. I experienced a pain on both front and back ribs that felt like it was in my bone marrow. Felt very different and was very uncomfortable but with the Clariton it HELPED.
      Take it one treatment a a time. You will get through this.
      Keep in touch.
      May God Bless you and your family,
      Mary

      4 months ago
    • Nanzee's Avatar
      Nanzee

      Forgot to mention the Claritin! My first Neulasta experience was terrible--nobody had warned me about the bone pain! I took Claritin for several days around all the others and never had a twinge. I guess word was just getting out to my clinic about that time. Some people still say they have some pain, but so far all I've heard is that Claritin really takes away the worst of it.

      4 months ago
    • AlexisJ's Avatar
      AlexisJ

      What time did you take the Claritin? My neulasta is at 7pm tomorrow. Should I take Claritin in the morning or right before the shot?

      4 months ago
    • Nanzee's Avatar
      Nanzee

      I would start it right now, and every day for three or four days after the shot. It can't hurt, and I'm not sure anyone has figured out the optimal time. But have it in your system before the shot. And keep us updated on how it's going--lots of us care, as you can tell from all the answers!

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      AlexisJ, don't forget to update us about how you are feeling! Did you tell your oncologist you were feeling nervous?

      4 months ago
    • AlexisJ's Avatar
      AlexisJ

      My port placement went smoothly but I am very sore. Infusion yesterday went okay. A few hours after I had bad stomach pains and decveloped a rash. My oncologist said it was an allergic reaction and had me take extra steroids. Seemed to help. Slept very little last night, but woke up feeling okay. Thank you all!

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Be sure and tell him if you are still feeling nervous. Even nerves can cause stomach problems and rashes, so you should tell them if you are.

      I take a chemo pill every day, and the times I get nauseous are when I'm stressed or anxious, so I have to be very aware of how I'm feeling and be extra careful if I'm upset. (Both my parents were sick last year and passed away a few months ago, and I can really tell when I take my chemo pill if I've had an emotional day. I've had many more problems than I had before.) Best wishes.

      4 months ago
    • Ejourneys' Avatar
      Ejourneys

      I agree with @Nanzee on the Claritin. My chemo nurse told me to take 10 mg Claritin (regular, not D) and 2 tabs Tylenol (350 or 500 mg, doesn't matter which) on the day of chemo and for 4-5 days thereafter. I never had a problem with Neulasta except for feeling slightly flu-ish after the first shot.

      4 months ago

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