• CancerChicky's Avatar

    CancerChicky asked a questionMalignant Mesothelioma

    I have been told that chemo and radiation will affect all of our senses. Which of yours have been affected?

    • IKickedIt's Avatar
      IKickedIt

      Taste buds. My family couldn't believe they were watching me, the Queen Chocoholic, spitting out chocolate! It lasted throughout chemo, but resolved and now I am back to being the lover of anything once again! (and the weight came back on, darn it!)

      Eyes were never affected nor was my hearing, however, I suffered from severe bilateral vestibular dysfunction because of the platinum-based drug I was on (fried inner ear and affected balance). Platinum-based drugs can affect hearing, too.

      And yes, certain things smelled funky to me, but my family assured me it was only my sense of smell that was weird. And that also resolved for me soon after I finished chemo.

      6 days ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I am going next week to have my eyes checked to see if they have been impacted by my treatments. I have tinnitus pretty badly, but I can't remember if I had it before treatments or not. My taste buds are fine ... if anything, I started liking more varieties of foods and I think my sense of smell is as good as it ever was. I only have touches of neuropathy and that only comes occasionally so I'm going to say "feel" is okay, too.

      6 days ago
    • GregP_WN's Avatar
      GregP_WN

      I lost taste in all of my three diagnoses, lost weight, I couldn't tell about sight or hearing. My smell seems to have been enhanced. That's about all I could tell.

      6 days ago
  • CancerChicky's Avatar

    CancerChicky asked a questionMalignant Mesothelioma

    How many scans can our body take in a lifetime? When is it too many?

    7 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      @andreacha, sometimes, my radiologists complain about the lack of dye, but I've seen the scans ... they look pretty clear to me... I went into shock from the dye one time - it worried them a lot ... so my files are marked and double marked ... no iodine dye!!!! (I had a MRI and I mentioned to them that I couldn't have dye. They told me theirs was different and wouldn't bother me. I was a little worried, but they were right. Thankfully, though, my kidneys are okay so far so we don't have the same concerns as you do!!!

      about 1 month ago
    • SandiA's Avatar
      SandiA

      @LiveWithCaner how did you know you developed the allergy. I had a scan yesterday and had the dye. It went well and I always get that warm feeling but yesterday it felt warmer and lasted a little longer. About the time I was going to say something it got better. So i didn’t but I wondered if you can develop a reaction after years of no reaction.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @SandiA, the first time I had an allergic reaction, I thought I was having a panic attack. I could barely breathe. I sat out front in the lobby for a few minutes and talked to myself about panicking. (I do not have anxiety attacks and had no reason to have an anxiety attack, but I never dreamed I was having an allergic reaction.) I didn't say anything to anyone and it got better after a bit of time.

      Too bad I didn't pay attention or know that what I was experiencing was a problem. The next scan, there was no hiding the fact that I was having symptoms. The moment they unhooked me, I had a terrible taste in my mouth (more so than normal), was so dizzy I could barely walk, and was very, very nauseous. I could also not catch my breath. I sat down for a few minutes again in the lobby, trying to get control of myself (STILL thinking I had some kind of emotional issue going on).

      Someone came in while I was trying to get my breathing right, talking about drinking banana barium. That sent me running to the bathroom, where I threw up multiple times. A doctor came into the bathroom while I was there and was really worried. I told her I was on my way up to the chemo lab to get my port de-accessed. She'd already alerted them that I was coming before I managed to get there.

      Fortunately, we had taken my blood pressure and oxygen and stuff when they accessed my port so we knew what was normal ... and everything had gone bonkers. I can't remember if it went high or low (or both) ... but nothing was normal. They went into emergency mode, got me some benadryl and I had to sit there for several hours while they hydrated me, gave me intravenous drugs and watched me like a hawk! Naturally, I had gone for my scan alone so had no one to drive me home. They really wanted me to get my husband to come get me, but I'm so hardheaded that I drove myself home when they finally deemed I was stable enough to be let go.

      I have never, ever had an allergic reaction. This one literally nearly killed me. I had been getting the iodine every 6 weeks for years with no problems. There is something they can give you if you have a reaction, but my doctor just has orders to not give me iodine dye. The radiologist can just suck it up and read the scan without it rather than put me in harm's way again...

      Soooooooooooooooo.... with all of that said ... do you have the results of your scan yet? I know there's been some worry and I'm hoping that is resolving itself in a way that says there is no more worry!

      about 1 month ago
  • CancerChicky's Avatar

    CancerChicky asked a questionMalignant Mesothelioma

    Has anyone had blood clots in their legs after or during treatments?

    • LiveWithCancer's Avatar
      LiveWithCancer

      I had one leg that got really swollen. My oncologist was concerned it was blood clots so sent me for tests. In my case, there was no apparent reason for the swelling.

      I personally would send a note or make a phone call to my oncologist's office. Blood clots are not something to mess around with.

      2 months ago
    • po18guy's Avatar
      po18guy

      An ultrasound can quickly identify or eliminate a thrombus as the cause. Make that call.

      2 months ago
    • GregP_WN's Avatar
      GregP_WN

      My Dad lived with blood clots for years. He would usually complain of pains in different spots on his legs. That's usually where the clot was.

      2 months ago
  • CancerChicky's Avatar

    CancerChicky asked a questionMalignant Mesothelioma

    Do you stay at home more now? Did your diagnosis cause you to not want to be out in large crowds?

    8 answers
    • cllinda's Avatar
      cllinda

      During treatments I was told to stay out of crowds. It was winter and flu season. It was a long winter.

      4 months ago
    • GregP_WN's Avatar
      GregP_WN

      During my chemo treatments over 30 years ago, I looked terrible. I lost so much weight I looked like a malnourished person from a third world country. People actually took a step back from me before like they were afraid they would "catch it". On the flip side, I was worried too much about others, but my doctors did tell me to stay clear of others that were sick. At the time, that seemed strange, me being as sick as I was and told to stay away from "sick people".

      4 months ago
    • Caddo's Avatar
      Caddo

      Yes I don't feel comfortable in crowds besides Dr said stay out of crowds avoid flu

      4 months ago
  • CancerChicky's Avatar

    CancerChicky asked a questionMalignant Mesothelioma

    Just a curiosity, where were you and what were you doing when you got the news that yes, you have cancer?

    18 answers
    • GregP_WN's Avatar
      GregP_WN

      For diagnoses 1 and 2 I was in the doctor's office when they told me. For #3, I was on a jobsite when the surgeon who did the biopsy called me.

      5 months ago
    • aracooper's Avatar
      aracooper

      I was home and I got a call from my doctor, he told me that I had cancer. He wanted to know if anyone was there with me and when I told him I was alone he said that he would stay on the phone with me until I was able to get someone over to my house to be with me. So with the doctor on my home phone, I used my cell phone to call my sister who was on her way over. While I waited for her to arrive my doctor explained to me that I had Lymphoma but he did not know the stage yet and that he would need to refer me to an oncologist fo further testing. This doctor remained on the phone with me for over 20 minutes until my sister walked in the door. He then insisted on speaking to my sister so he could explain to her what was happening too, just in case I was overwhelmed with emotions and had forgotten his instructions about appointments. Some people may criticize my doctor for telling me over the phone but I think it was just fine. There is no best way for a doctor to do this. Had his office called me and had me come into his office then I would have had to drive home by myself which may have been dangerous after hearing this type of news. My doctor handle this horrible situation in a very kind and compassionate manner. I am very grateful to him for that.

      5 months ago
    • Vaughnn's Avatar
      Vaughnn

      I was home sitting in my den watching TBN. The doctor called and told me 2 days after the biopsy.

      4 months ago
  • CancerChicky's Avatar

    CancerChicky asked a questionMalignant Mesothelioma

    Have any of you had any "ambulance chaser" attorneys call you about your cancer diagnosis?

    4 answers
    • po18guy's Avatar
      po18guy

      I don't have FB, Instagram or any social media exposure. I hide behind my username on the web, so ambitious attorneys will find it very difficult to locate me. I live in great hiking territory, and that is exactly what I would tell them to do.

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      My lung cancer (adenocarcinoma) is too common - no one has called me. I do see ads all of the time for mesothelioma so am not horribly surprised that you have been called. My first question, though, is how they know your diagnosis. Where's HIPPA?

      4 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      LWC -- Believe me, HIPAA can be breached. Should NEVER be, but it can be.

      4 months ago
  • CancerChicky's Avatar

    CancerChicky asked a questionMalignant Mesothelioma

    Here we are on Sunday night again, treatment tomorrow. I'm dreading it so much I want to go to bed and not wake up.

    6 answers
    • JaneA's Avatar
      JaneA

      That was exactly how I felt every other Sunday. I'm feeling better and now I had to go back and do this again. But it's what we have to endure to live.

      If there is a particular side effect that bothers you, talk to your oncologist and see if there is something that you can take to help you feel better.

      6 months ago
    • BoiseB's Avatar
      BoiseB

      I was so sick by the time I was diagnosed and started treatment that I thought I couldn't get any sicker and given the prognosis I wasn't even sure I would wake up the next day. I had two types of chemo one that I had for several hours in the chemo suite and one that was strapped on for 4 days. Chemo brain was so bad that I couldn't remember what day it was so I guess it might have been a blessing as I didn't dread the next day because I didn't know what that day was

      6 months ago
    • GregP_WN's Avatar
      GregP_WN

      I can relate to that completely. That's exactly how I felt on my every 2 weeks treatments. I would just start to feel good again and then it was time for another treatment. It sucks, but I felt like there were no other options,

      6 months ago