Need Help & Support

nudgie
nudgie Member Posts: 1,478 Member
edited March 2014 in Colorectal Cancer #1
Maybe I am being too much of a baby or sissy with this beast. Since the beginning there has always been a bump in the road and it does not look likes its going to stop.

10 July 06 - Colon cancer tumor Stage II NO/MO removed.
18 Aug 06 - Port-A-Cath implanted
17 Aug 06 - Air in lung cavity due to implant of port-a-cath. Chest tub installed
18 Aug 06 - Started FLOFOX Regime of 5FU,LV & Oxiplatin.
21 Aug 06 - Chest tube removed
15 Sept 06 - 3rd round of chemo. Starting noticing breathing changes. Informed Onc Doc and nurses. No action taken. Made an appointment with my lung doc and had several breathing test done. Results were all normal. Also had an on-going CT Scan done on 29 Sept to check on Pulmonary Nodule. No change
29 Sept 06 - 4th round of chemo rescheduled due to low WBC count .7. Rescheduled for 6 October
6 Oct 06 - 4th round of chemo done. Onc Doc recommends starting Neulasta shots 24 hours after pump is removed.
9 Oct 06 - Neulasta shot
12 Oct 06 - At work and around 9:30am heart started to race. Heart rate 155. Called Ambulance. Blood work indicated my WBC on 12 Oct was reading 44.3. ER Doc spoke with my Onc Doc and he indicated that this was okay and tht the shot would not cause this. My lung doc recommended I stay in hospital overnight for observation. I was hooked up to an wireless heart monitor machine and all went well. All tests came back good for blood, counts, chemistry, enzymes, etc.. The only thing I noticed was one of my liver counts were up to 120 from 45 a week before, so I called my Onc Doc and he indicated since it was still within the normal range not to worry, but I questioned, it was 45 a week before, now it reads 120, why the jump? Could not provide an answer.
14 Oct 06 - Woke up this morning around 12:30am and noticed a lot of little (large than a pin head, but smaller than a penny) red itchy bumps on my back, so I rubbed some lotion on them and went back to bed. Got up to help babysit my niece around 5:00am and noticed more on my arms, neck, underarms and knees, so I put more lotion on and waited. Still have not gone away, so I called the on-call Onc Doc and explained. He recommended Benadryl and call him in the morning, but after reading the Benadryl box i noticed it stated not to take if you have a breathing problem, and with my high heart rate, i have decided not to take them and see him tomorrow, 15 Oct 06, morning around 9:30am
20 Oct 06 - Will be my scheduled 5th round of chemo. I am thinking of stopping due to so many weird and unexplained side effects that docs don't know where they are coming from or dropping the chemo dose and stopping the Neulasta shots. Did not have a high heart rate until AFTER the shot. Onc Doc swears it did not cause it, but i do know that 5FU can.

Also, when I tell my nurses and Onc Doc what side effects I am having them seem to not be worried even when some of them are listed on THEIR paperwork they gave me as to take SERIOUSLY and GET EMERGEMCY HELP right away.

I try and be BRAVE and suck it all in, but i find myself crying too much lately and not wanting my husband to leave and got out with this friends. I also find myself getting mad at him when he does leave. He has been sooo GREAT since the begininng. Staying home with me, missing work, riding to work together, only working 5-6 hours each day, etc.

I admit, I am SCARED and just want to get through my chemo to make sure it gets everything, but when do you know you have had enough. I am stage II w/NO/MO, should I take a chance and stop chemo, reduce dosage, or continue with full strength and the WBC booster, will need RBC booster soon. PLEASE HELP!!!!

Comments

  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #2
    Hi -
    I wish I knew something about Neulasta, but I never had it.

    However, from the Neulasta web site itself comes the following regarding possible side effects:

    "Neulasta® can cause serious allergic reactions. These reactions can cause a rash over the whole body, shortness of breath, wheezing, dizziness (a drop in blood pressure), swelling around the mouth or eyes, fast pulse, and/or sweating. Sometimes these symptoms could come back within days after stopping treatment for the allergic reaction. If you get these symptoms at any time, stop using Neulasta® and call a doctor or get emergency care right away. If you have an allergic reaction during the injection of Neulasta®, stop the injection right away."

    It sounds as if these things would most likely occur during the injection or shortly after, but your reaction may still be allergic - I would REALLY press your oncologist.

    You are Stage II - I don't mean to imply "only", but chemo is at least questionable / experimental / optional at this stage. I know how much you want to finish and hope it gives you the best outcome, but I suggest making an appointment with your oncologist and telling him that you are considering stopping chemo, tell him why and ask him to convince you to keep going - maybe then he will take you seriously (sort of sounds like that is not happening now). Not sure how many cycles are planned, but especially at Stage II, chemo should be a little something extra rather than something that feels life threatening.

    I don't think you are being a baby. I really think you should have an in person appointment with your oncologist BEFORE starting the next chemo round.

    In my thoughts,
    Betsy
  • JADot
    JADot Member Posts: 709 Member
    #3
    Nudgie:

    You've been through a lot! But don't let it overwhelm you. You have to sort it out one by one, find out what's the cause, consequence and corrective action for each thing you're facing.

    No, chemo is not easy and we certainly don't it for fun, but my onc told me that the 1st 3 month of it is really important, and you're almost there.

    I had fast heart rate and sudden rise in blood pressure - they were both due to the steroids that's in the pre-infusion nausea drug. Ask your nurse if you are getting Decadron.

    This thing made me physically ill, so I opted out. Right away my fast heart rate slowed. blood pressure dropped, and I could sleep again. OK, I was throwing up more, but it was a tradeoff I was willing make.

    Good luck to you!
    Ying
  • steelerfan
    steelerfan Member Posts: 26 Member
    #4
    Dear Nudgie, I was Stage II with no lymph nodes and opted for the chemo. I had 5FU but not neulasta. I did not have the problems you are having. Obviously, something is causing your symptoms. You are not being a baby! I agree with Betsy--you need to see the doctor in person and be persistent to get some answers. You have been through alot. Hang in there. Mary
  • CAMaura
    CAMaura Member Posts: 719 Member
    #5
    Here is my STRONG opinion. You are NO sissy. And you are not being a baby. These side effects are happening to you -- along with nausea and fatigue.
    Have a serious heart to heart with your doctor. Get him/her to understand that you are not a punching bag for the chemo drugs. If you need to, have someone go to the appointment with you to advocate for or with you. It may be that your body is just NOT handling the drugs well. Have you lost a lot of weight? if so, the amount first calculated could be too high for you. There is a reason your liver counts are going up...It is working hard to filter the drugs and may be having a hard time.
    I am truly not saying anything to scare you -- just to have you get your doc's attention focussed on YOU -- not a medical journal or what he thinks is okay or acceptable. I am furious when I hear of doctor's not 'getting it' that we are not just a statistic. Really push for some communication which will work for you. Have a printout of all of your bloodwork and go over everything with him. If you are not satisfied, call your insurance company and the hospital group and ask for a referral for another onc. YOu can also just tell him that you are not satisfied with his level of comunication with you; that alone might kick him up a notch.
    Rest and eat well and fight for the best treatment possible. You are NO baby...You deserve the best! Take care - Maura
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #6
    I think you should stop chemo. I think it is killing you. It almost killed my mother. It is not for everyone. It is not worth do die from side effects of chemo. Please look into alternative methods. email me if you want to talk about anything you want or need.
  • jerseysue
    jerseysue Member Posts: 624 Member
    #7
    Keep your list and keep getting in their face. Also do you have the opportunity to change doctors? Keep at them you know what feels right and what feels wrong.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #8
    Nah, each person's fight is as important as another.
    Please, please, please ask about Neupogin. This is the same stuff as Neulasta, just a different delivery. I had it for my colon chemo....biggest trouble was going in every day for a shot...but Neulasta! WHEW! I had flu symptoms, my shoulders were VERY painful....I really think the Neulasta was worse than the chemo itself!

    I no longer take anything 'time released'. With my breast cancer (that's when I had the Neulasta), I take Actonel....once-a-week bone strengthener...I was offered Boniva, which is once-a-month, but refused it. I would rather be a bit inconvenienced than in discomfort from a reaction to the time-release stuff.

    GREAT BIG, FUZZY Hugs!!!!!
    Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    JADot said:

    Nudgie:

    You've been through a lot! But don't let it overwhelm you. You have to sort it out one by one, find out what's the cause, consequence and corrective action for each thing you're facing.

    No, chemo is not easy and we certainly don't it for fun, but my onc told me that the 1st 3 month of it is really important, and you're almost there.

    I had fast heart rate and sudden rise in blood pressure - they were both due to the steroids that's in the pre-infusion nausea drug. Ask your nurse if you are getting Decadron.

    This thing made me physically ill, so I opted out. Right away my fast heart rate slowed. blood pressure dropped, and I could sleep again. OK, I was throwing up more, but it was a tradeoff I was willing make.

    Good luck to you!
    Ying

    Hummmm, Ying....my onc graduated from the Minimalist School of Medicine....sigh....never got the steroids, just an antihistimene (spelling bad...darn keyboard). BUT I didn't have half the troubles others have shared...just nausea, but I drank ginger ale for it....
    Hugs, Kathi
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #10
    I don't know what else to tell you besides, I don't know when they started putting Stage II patients on chemo. When I was diagnosed I was told that if there were no lymph nodes involved then, no chemo! At what point did this change? Are there statistical reasons for a Stage II patient to be on chemo or are they just doing it to sell more drugs? Especially Oxaliplatin. That is a pretty hard core chemo drug and I see no reason for you to be on it! For real!
    I would stop and never think twice about it.
    Opinion of a Stage IV survivor who has never been on Oxy. Doc said to save it if ''God Forbid" I needed to go back on chemo at some future time.
    -Susan.
  • Puddy
    Puddy Member Posts: 14
    #11
    shmurciakova said:

    I don't know what else to tell you besides, I don't know when they started putting Stage II patients on chemo. When I was diagnosed I was told that if there were no lymph nodes involved then, no chemo! At what point did this change? Are there statistical reasons for a Stage II patient to be on chemo or are they just doing it to sell more drugs? Especially Oxaliplatin. That is a pretty hard core chemo drug and I see no reason for you to be on it! For real!
    I would stop and never think twice about it.
    Opinion of a Stage IV survivor who has never been on Oxy. Doc said to save it if ''God Forbid" I needed to go back on chemo at some future time.
    -Susan.

    Susan I agree with you completely. I am Stage II, N0, M0. I had a subtotal coloectomy on Aug 3 and at six weeks the onc wanted to put me on the full plan including Oxaliplatin. I asked for time to think and do some research. I am 54, in good physical condition but have reacted to almost every antibiotic known. Steriods do not agree with me and heart disease runs in my family (although I seem to have no issues at this time--knock wood). But the onc's plan seemed extreme to me. I wanted to know what my options were and asked her opinion of Xeloda. It seemed far less complicated (eliminating much of the stress surrounding chemo scheduling) and the dosage could start low (I am on 2000 a day). I do not know if this is the right decision, but I considered the health risks involved with my onc plan and thought they were not worth taking for a reduction from a 25% chance of cancer returning to a 10-15% chance. Also, I had to consider I was uping my risk of heart disease, and of getting an unrelated cancer further down the line as a result of the treatment. If I had a stage IV, I would have moved forward, but at a Stage II I had a choice. We can also alter other lifestyles that increase recurrence odds. You are right about the Oxy being there at a point in the future if it was needed. I referred to it as the big bomb and told my onc that I was saving it for a bigger battle if it became necessary. She was resistent to my plan, but agreed because she didn't want me to do nothing. I have to say that in the beginning I was told there was no right or wrong choice regarding Stage II and chemo and just a few short years ago it would not have even been considered and if it was certainly not at the mega doses being recommended. I am almost through my second week of the Xeloda and have not had any noticeable side effects. I would not think twice about dropping it if I started having serious issues. At a Stage II the risks simply do not justify the complications.
    Puddy

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