• Starting chemo next week jan 4 2017 for CLL

    Asked by Lindyver on Saturday, December 31, 2016

    Starting chemo next week jan 4 2017 for CLL

    I will have 3 days a month of FCR(fludarabine, cyclosphamide, rituximab)For up to 6 cycles. Very scared about the treatment. I don't even know what my question is. I guess just looking for what it is like for the first treatment, what if felt like during and after. Thank you for any advice.

    16 Answers from the Community

    16 answers
    • cllinda's Avatar
      cllinda

      Each chemo and the side effects are different. Hopefully, your chemo place will give you a "Teach" session where they give you the side effect list, and what to do when something happens. When to call them, when to seek the ER, etc. And always call if a fever, rash, or something else weird to you happens. That's what they are there for.
      And some people may breeze by the side effects with just minimal discomfort, and others (like me) end up in the ER and the hospital several times during treatments.
      Bring someone will you for the appointments. Have them take notes because things can be overwhelming. My daughter came with for note taking, and the doctor even spelled medical words for her so we could look them up when we got home.
      Also, because you don't know how the chemo and other drugs will effect you, have someone drive you and stay with you for the day. Each chemo can be different and the infusions can be from a couple of hours to 5 or 6 hours or more. Bring a light meal with you but nothing that can be too smelly and be upsetting to the person or people next to you. In our chemo room, there was 6 chairs in a section (recliners) and a tv. Also, beverages such as Gatorade, sprite, and other beverages should be brought with you. Different centers may provide beverages and other things, but mine didn't.
      Also, in the "teach" will be a walk to the chemo center where you will see where treatments will be, and meet some of the nurses. One thing about chemo nurses is that they are some of the friendliest nurses you will ever meet. They make you feel so at home, even though you are going through a battle.
      During your chemo treatments, expect blood tests to see how your body is coping with the chemo, and how your blood levels are doing. Sometimes, vitamins, or shots or transfusions may be necessary to get blood levels to come up or down to ordinary levels.
      It's a lot to go through. Hugs to you as you start this part of the journey.

      over 3 years ago
    • cllinda's Avatar
      cllinda

      One thing I forgot about. A power port can be a lifesaver for chemo. It's a device that the chemo is put in each time for a treatment. It's a device that they put on your chest through a minor procedure, and it is used instead of having the nurses search each time for a good vein in your arms. If your doctor hasn't told you about the power port, ask him.

      over 3 years ago
    • GregP_WN's Avatar
      GregP_WN

      I can't give you any feedback on those drugs, I didn't have them, but just wanted to say all of us on the WhatNext Team are wishing you the best.

      over 3 years ago
    • MoveIt2012's Avatar
      MoveIt2012

      I'm going to echo everyone's comments. My power port was great and the general info from clinch is spot on. Haven't had those drugs but the general info helped me a lot. Best wishes to you.

      over 3 years ago
    • 0008184's Avatar
      0008184

      Just a couple of notes from my perspective. First trust your doctor. I was on oral chemo first. It worked for a couple of months . I then got bad fast. I had chemo for the next 6 months. I can't tell you what meds they were but I had 5 days of infusion chemo and then a week of shots to build my whites back. Then the next month the same thing. I told him five years later he had a great mixologist. Every day my blood work told them how much of what to give me. 15 years later I still thank them. I have had bladder cancer and now am dealing with a tumor. Neither have anything to do with my CLL. I am alive and generally well 15 years after I thought it never would be happy again.

      over 3 years ago
    • anniemk's Avatar
      anniemk

      All of the feedback is spot-on. I was very apprehensive for my first infusion of Rituxin. I was given Benedryll 30 min. before which made me tired, which was good. I brought a book and smart phone but I didn't feel up to it, I just stared at the TV and observed the nurses work. My center had about 30 chairs, a few in back had drapes for privacy. There were soft drinks, coffee, and water and a lunch and snack cart. My favorite were the Lorna Doon cookies which I will forever refer to as 'chemo cookies'. I had about 8 infusions, along with oral med if Irutinub, which I will take forever. My counts are all normal, white count fell quickly from 435,000 to 8,000. Best wishes!

      over 3 years ago
    • Carolina105's Avatar
      Carolina105

      I didn't start out with a port..... big mistake. After being continually stuck for blood test & chemo, my veins were shot (not good to begin with). If you haven't do so, I urge you to get a port before you start treatment. My doctor did not encourage having a port, so I didn't get one in the beginning. After I realized he wasn't the one being stuck constantly for blood draws & chemothearpy, I insisted on having a port. I would get so anxious for every blood draw (which there will be many) & chemo because I knew they were going to have trouble finding a vein. The reason given by doctors is concern for infection at the port site. If proper access is followed, that should not be a concern. I find being constantly stuck trying to find a vein to be a big concern for infection.
      I certainly understand your anxiety about your first treatment. I was treated with rituximab & bendamustine every 28 days for 6 months then rituximab evert other month for 2 years. My last treatment was July & have been in remission for several months. I see my hematologist every 3 months for follow up & labs.
      Take a deep breath & say a prayer and you will be fine. Good luck

      over 3 years ago
    • anniemk's Avatar
      anniemk

      Also, I had a chest port. I had no trouble with it, quick access by needle and it was flat so didn't even 'show' with fitted tops. It was taken out after 10 mo., at my oncologists suggestion. He said I would be treated with oral meds from now on out.

      over 3 years ago
    • Vipvinny's Avatar
      Vipvinny

      My advice to everyone chemo and radiation kill long before cancer does.. use cannabis oil change your diet to high alkaline eat all natural foods! Your odds of beating cancer are higher than killing it temporarily with chemo.. it always comes back life style changes are key..

      over 3 years ago
    • anniemk's Avatar
      anniemk

      Vip, there is much to be said about cancer treatments, I appreciate your perspective. However the new targeted treatments are way different than the older chemos and solid tumour treatment and surgery. And blood cancer is a different animal than solid tumours. Some of the new treatments harness your own immune system to fight it. My treatment works on the blood cell wall. The enzymes and proteins that allow the cells to function. My CLL is presently 'inactive'. It's not a death sentence.

      over 3 years ago
    • still_fighting's Avatar
      still_fighting

      Hi Lindyver I know your nervous and scared about your upcoming treatment, we all were. I have had this combo before for my CLL. Because this is your first treatment series the chemo nurses and doctors will monitor you very closely. In my cancer center they reserve the first 2 seats by the nurse's station for new patients. You will have your blood drawn before you start treatment and they will take your BP several times during the treatment. I have an infusaport...This is my 4th one. I will always have a port. I didn't have one for my first go round and it tore my veins up. Everyone there is super nice because they know what you're going through and will help you in any way they can. if you start feeling weird or different tell your nurses right away. Often they recognized I was having a reaction before I realized it. We have warm blankets and a heating pad to help keep you warm (the Rituxin chills you from the inside out) so if you feel a shiver or chill tell them. My center offers peanut butter & cheese crackers to snack on and cold water and juice but you can take your own snacks/drinks. For some reason the benadryl makes you crave sweets so bring something sweet and soft to eat. Take a mindless game/phone/tablet to play on while you're there. They do have TV but your so drosey that you can't focus well. You will probably sleep most of the time you're there which is good because it will help pass the time. The treatments are really long because they have to give them to you slowly. I was by myself for my treatments since my boys were little and I was divorced. My sister would come sit with me for awhile when I knew I was going to be there for a really long time. My center has a couple of private rooms for those who need special treatment or attention. The side effects will be different for each person but for me on this treatment comb I had dry mouth, nausea, mouth sores, muscle aches, weakness and tiredness. If you experience any of these symptoms tell your team as they can help with a lot of the side effects. I had to eat soft breakfast bars, scrambled eggs, soups and cold things like ice cream, icee type things that helped with the soreness and dry mouth. Hard candy helps too once you get past the dry mouth. My doc wanted me to live as close to normal as I felt capable of but be very aware of where you are (large groups of people, being in a confined area with people who may be sick, ECT.) and avoid people who are sick and running fever. Just tell your doc and chemo team if you don't feel good or feel weird. For me personally, I felt like I had a bad case of the flu...Which is to be expected. I crochet, have my phone and tablet for my mindless games that helps pass the time and bring something to eat and drink on while I'm there. I've tried 2 of the oral treatments but they didn't work for me. I've been on the Rituxin treatments every 6 months for 2 years but now I have them every 2 weeks. I have CLL with 17p deletion which is rare and hard to treat. If you go prepared you'll feel a little better about what you're going through so I hope this helps. I always have a reaction to my first Rituxin treatment but my team knows that and nips it in the bud before it becomes a problem. God bless sweetie for you and your family and go in with a positive attitude it really helps and you meet some really nice people. No matter what...Keep fighting!

      over 3 years ago
    • Lindyver's Avatar
      Lindyver

      Thank you all for the great advice and support. I was fully prepared with a large bag and things to do and food to eat. One cycle down and behind me 5 to go. I started work and am just living life day by day and enjoying every moment.

      over 3 years ago
    • mofields' Avatar
      mofields

      I've read all your answers to this question. My husband just got told today that because the oral chemo was giving him nasty side effects, we have no choice but to start the infusion. These are three of the drugs, plus Bendamustine, that were mentioned. Got a call from the Cancer Center this afternoon to set a date for his port placement. Everything moving so fast. At least we have already met our insurance deductible. I know he is nervous, angry, about this. Me, I'm just plain scared. I am 3 years post breast cancer, but did not have to do chemo.

      about 3 years ago
    • Lindyver's Avatar
      Lindyver

      Just finished my 6 mths of chemo 2 weeks ago! If you have any questions about the chemo FCR I tolerated it well, just ask I will be happy to talk to you. I did not have the bendamustine.

      about 3 years ago
    • Lindyver's Avatar
      Lindyver

      ^ comment to @mofiields

      about 3 years ago
    • mofields' Avatar
      mofields

      Thank you @Lindyver! The port will be placed tomorrow, and we start chemo on Monday. Don't know the combination of drugs yet. Hope we'll find that out tomorrow.

      about 3 years ago

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