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  • Finally sinking in...

    Met the oncologist yesterday for the first time to go over things after my right orchidectomy. Am healing up ok form the surgery - still bruised, but able to hobble to shops and back without too much difficulty

    Oncologist gave me the results from the CT scans - and one of the lymph nodes in my abdomen has a tumour the size of a penny. Cancer markers seemed normalish apart from AFP which was ~22 (read off his notes so i could be rememebring wrong). No stomach/digestive problems i've noticed. So He's reccommending 3x3week B.E.P. treatment. Hearing him reel off all the side effects was so daunting at the time - he's pretty blunt about it all. Was a wreck last night - i always suspected that chemo would be on the cards but hearing exaclty what's involved really hit it home. But feeling more positive this morning - cant be upset on a sunny day spending time with my g/f! Tho my positive attitude has taken a dent, and i'm finding it harder to keep it going!

    My biggest fears are how i'll cope with the chemo. Seeing a list of side effects on paper does really tell me anything - Fatigue is what i seem to suffer every day after work. Can you guys give me a more personal account of what i should expect? Also what should i do to prepare? Things are due to start first week in july, so i need to start making plans. Are there anything i can change in my diet (more antioxidants) to help stave off some side effects? Just what can and cant i do on chemo - will i feel up to reading, writing, watching tv, playing on computer, walking etc?

    How long after the chemo until i start feeling life returning to normal?

    I realise a lot of these questions are answered on the site, but i'd appreciate some personal experiences if possible to give me a better feel of what to expect, and how to cope

    Thanks

    Tatt

  • #2
    Sorry to hear about the BEP but the good news it it will fix the problem (I know easy to say that I am not the one having to do it)
    There are many on here that will give you some good ideas and things to do to make it as easy as can be expected.
    Just remember we are all pulling for you!!!!!! Keep us updated
    Good Luck
    Brian
    5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07

    Comment


    • #3
      Tatt, if you search the archives you'll find pretty similar advice from everyone who's had chemo, even though the toleration of it varies widely from person to person. You can check my blog (in my sig) as well as others' blogs for detailed narratives. What you'll generally hear is:

      1. Drink lots of water
      2. Eat what you can when you can, in small amounts
      3. Take your antinausea meds like clockwork
      4. Do what you feel like doing, and rest when you get tired
      5. Get a port for easy needle access
      6. Arrange for someone to drive you to and from treatment, if it's outpatient

      I had some of the common side effects (Peripheral Neuropathy, Reynaud's Phenomenon, Bleo stripes, hair loss, hiccups) but not others (mouth sores, severe nausea, severe acid reflux, tinnitus, hearing loss). Some weeks I was able to work 1/2 to 3/4 days, other weeks I slept.

      Some folks also recommend a low-fat diet and banking sperm prior to the start of chemo.

      As they say, YMMV. Good luck! It will all soon be a bad memory.
      Vinny (aka Frank)
      http://vinnysgotcancer.blogspot.com

      left I/O 1/5/05; 95%EC / 5% mature teratoma; stage IIIC
      4x BEP 1/24/05 - 4/11/05; RPLND (left side) 5/31/05
      VATS resection of teratoma from left lung 4/26/06
      Presently surveilling

      Comment


      • #4
        Originally posted by Tatt
        Hearing him reel off all the side effects was so daunting at the time - he's pretty blunt about it all. Was a wreck last night - i always suspected that chemo would be on the cards but hearing exaclty what's involved really hit it home.
        Doctors have to say all of that so you don't sue them later for not warning you. If I told you that visiting the U.S. could cause you to get hit, stabbed, robbed, shot, carjacked, tortured, and even killed, you would understand that there is no one person that has had all that happen to them when they visit the U.S. I just gave you all of the possibilities

        Your doctor and the people here should be able to give you some good information about staying well during chemo. Here are some things I did that were "out of the norm" that worked for me:
        --Talk to a nutritionist before chemo starts. They can give you hints on what and what not to eat during chemo. For example, you're doing chemo and you feel sick, but you need to eat something. In front of you is an apple and a piece of apple pie. What do you eat? The answer is apple pie, it has more calories and that is what you need if you are not eating.
        --I assume they are giving you Bleo. Ask to see a pulmonologist before chemo starts to get a baseline Pulmonary Function Test (PFT). Then have the pulmonologist follow you periodically throughout the chemo. That saved my lungs.
        --Chemo is like our national debt. We bring in $100 billion but spend $200 billion. Eventually it catches up to you. The first and probably the second cycle will be OK, but the third and, if you need it, fourth cycle will be tough. The two weeks between cycles is not enough time for your body to recover, so you are always starting the next cycle a little weaker.
        --If you can take off from work for at least nine weeks, do it. You will have a weakened immune system and you don't want to catch something. Also, you will be very tired.
        --When you are really, really sick, don't let someone force your favorite food on you. During my last week I was so sick. My wife knew I liked donuts and practically forced me to eat one. Now when I see a donut, I get sick.

        Chemo is not all that bad. Read my thread about the benefits from chemo at http://www.tc-cancer.com/forum/showthread.php?t=3636
        ________
        WASHINGTON MEDICAL MARIJUANA DISPENSARY
        Last edited by BeachTech; 08-12-11, 12:22 AM.
        BeachTech
        Diagnosis
        Diagnosed May 2005
        Stage IIa
        Pure Embryonic Carcinoma
        One 2.0cm tumor in testicle
        One 1.0cm tumor in lymph node

        Treatment
        Radical orchiectomy
        Two cycles of BEP
        Two cycles of EP (the Bleo was causing lung issues)

        Complications
        Pulmonary Embolism (Almost died)
        Extremely low red blood count (Required 4 blood transfusion)

        Status
        In remission since August 2005
        July 2011-tumor markers clean!

        Favorite Question
        "Which testicle did they remove?"

        Comment


        • #5
          Rplnd????

          Tatt,

          Was RPLND ever brought up???? I am not sure what all your markers were but the AFP leads me to believe that it was low. If it returns to normal, afet the I/O, then you may be a good canidate for the RPLND. Just one more thing you have to look into. Anything you can do to avoid Chemo is good.
          Diagnosed 7/5/05, Rt. I/O 7/29/05, Nonseminoma Stage IIa, Started 3XBEP 9/06/05 changed to 4XEP due to reaction from Bleomycin. Currently surveillance.

          Comment


          • #6
            Go to the Bank

            Originally posted by Vinny
            Some folks also recommend .....banking sperm prior to the start of chemo.
            Oh yeah, I forgot to mention that. Unless you have kids and absolutely don't want anymore, I would strongly suggest banking before the first day of chemo. You have to allow about 3 days between deposits (to regenerate the little fellas), and 3 deposits should be good.
            ________
            Web shows
            Last edited by BeachTech; 08-12-11, 12:23 AM.
            BeachTech
            Diagnosis
            Diagnosed May 2005
            Stage IIa
            Pure Embryonic Carcinoma
            One 2.0cm tumor in testicle
            One 1.0cm tumor in lymph node

            Treatment
            Radical orchiectomy
            Two cycles of BEP
            Two cycles of EP (the Bleo was causing lung issues)

            Complications
            Pulmonary Embolism (Almost died)
            Extremely low red blood count (Required 4 blood transfusion)

            Status
            In remission since August 2005
            July 2011-tumor markers clean!

            Favorite Question
            "Which testicle did they remove?"

            Comment


            • #7
              RPLND hasnt been mentioned - thisis somethign I'm not clear on. How likely is it i'll need surgery after the chemo - either RPLND or just to remove dead mass?

              ANother question about the chemo - just how much care/attention will i need? I'm being pressured by my parents to move back in with them (200 miles away from where i live now), but I think i'll feel more comfortable in my current home, although there wont be someone on hand as often but i will be nearer to my partner. I know my parents are getting upset because i'm resisting moving into theirs but should i be forgoing my comforts for the chance of having someone on hand more often?

              Comment


              • #8
                Hope you dont mind another quick question!

                how big a risk is teeth loss as a side effect of BEP? I've seen it mentioned in a few survivors stories, but its not in the main lists of chemo side effects? Just wondering if its worth popping by the dentists before I start my course?

                Comment


                • #9
                  Not likely

                  Originally posted by Tatt
                  Hope you dont mind another quick question!

                  how big a risk is teeth loss as a side effect of BEP? I've seen it mentioned in a few survivors stories, but its not in the main lists of chemo side effects? Just wondering if its worth popping by the dentists before I start my course?
                  I know a lot of people (including myself) have had mild to severe tooth sensitivity (sensitive to cold and heat) with BEP. My dentist recommended Sensodyne toothpaste, and it helped. I got to the point where breathing through my mouth (the cold air coming over my teeth) would hurt. Try to drink water, soda, etc. at room temperature. It went back to normal a month post chemo.

                  I would suggest going to your dentist before just to make sure your dental health is OK. I have heard that you don't want to need dental work when you are going through BEP.

                  Watch for sores in your mouth and gums when you are on BEP. My oncologist checked for this everytime I went in. It can be the start of a big problem.
                  ________
                  RUBINNAJM
                  Last edited by BeachTech; 08-12-11, 12:23 AM.
                  BeachTech
                  Diagnosis
                  Diagnosed May 2005
                  Stage IIa
                  Pure Embryonic Carcinoma
                  One 2.0cm tumor in testicle
                  One 1.0cm tumor in lymph node

                  Treatment
                  Radical orchiectomy
                  Two cycles of BEP
                  Two cycles of EP (the Bleo was causing lung issues)

                  Complications
                  Pulmonary Embolism (Almost died)
                  Extremely low red blood count (Required 4 blood transfusion)

                  Status
                  In remission since August 2005
                  July 2011-tumor markers clean!

                  Favorite Question
                  "Which testicle did they remove?"

                  Comment


                  • #10
                    Honestly, every person reacts to chemo differently. The best bet is to contact a nutritionist prior to BEP and see if white blood cell boosters are recommended for your case. Antibacterial wipes and waterless soaps are indespensible for you and your family to use. Anything you can do to keep yourself as healthy as possible will aid you through the process.

                    My husband had 9 weeks (3 ~ 5 day treatment weeks, 6 ~ 1 day treatment weeks) of BEP. During a majority of those 1 day treatment weeks, he was able to work 8 hour days as a carpenter. He was fatigued by the end of the day but working really helped him mentally and physically. I wouldn't say this is the norm for everyone, but possible.

                    His worst reaction to the chemo was nausea (which my crazy driving didn't help). To help with that he tried to eat frequently during the day even if it was only a few crackers. Ask your favorite pregnant women for helpful tips with nausea.

                    Best of luck!!

                    Comment


                    • #11
                      Tatt,

                      You've received some great advice here. My only additional suggestion is to make sure you have some help, especially during the later rounds. My wife pretty much kept me going for about a month or so with all her help and hard work. This is one time that you should let people wait on you and help you out.

                      Regarding feeling "normal"--I guess it depends. My hair started coming back at 8 weeks, and I had a good appetite after about two weeks (my stomach shows it). However, after 8 months, I still don't have my pre-chemo strength, and I still have varying degrees of neuropathy. Yet, I'm happy to be here, because if this was 1970, I'd probably be gone by now.

                      Also, if your oncologist prescribes Neulasta, Neupogen, or Aranesp, go for it. The injections--though painful and very expensive--sure helped me keep on my chemo schedule by boosting both my white and red blood cells.
                      Left I/O 6/24/05
                      100% Embryonal Cell Carcinoma, Stage III
                      4xBEP August - October 2005
                      Surveillance since Nov. 2005

                      Comment


                      • #12
                        Tatt, sorry about the chemo, but as mentioned, it will take care of this thing...and you can get on with your life! My son Chris had four rounds last year....after a week of chemo, he would fee pretty good on the next Tuesday, and would head back to college....the nausea was pretty bad, but he was religious about keeping on track with his meds to help...he drank alot of decaf iced tea, and had a craving for popcorn...it was tough, but he got thru it...he also had to have RPLND because of teratoma...but right now, he is strong, works a job for the summer lifting heavy boxes...what a difference from a year ago...his hair came back curlier...which he doesn't mind (especially because the girls like it)...he never had ringing in ears, and was lucky to escape any neuropathy as he is a musician...everyone is different though....hope that helps...keep us posted...Mary Ellen

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