david-s

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 46 total)
  • Author
    Posts
  • in reply to: Sorry I haven’t written in a while #25850
    david-s
    Member

    Just thought I would drop a note. As you know I started chemo again in November 2010. This time we aren’t having the luck we had the first time around. I have only been able to have 5 treatments so far. My marker number is still going up and my WBC/RBC/Platelets are all going down. I get neupogn shots when I get treatment for my WBC/RBC. They can’t do anything for boosting platelets. Last Friday was the worst so far. I actually started to think what if my body can’t handle the treatments. There is no other option for me except one trial but I am not willing to go into a trial yet. That would be the last resort. I am so mad at my body. My mind is good but my body just will not corporate. I am scheduled again for treatment this Friday. Feeling a little blue tonight. I will keep in touch.

    in reply to: Sorry I haven’t written in a while #25848
    david-s
    Member

    Margaret,
    Thanks. Funny as we get older we need to go back to childhood fixes.

    in reply to: Sorry I haven’t written in a while #25846
    david-s
    Member

    I had my second treatment on Friday. My blood count was low but the decided to go ahead with my treatment. Dialing it down a little seemed to help me yesterday and today. I feel full but not as nausaus. My problem seems to be not going to the bathroom. I am on so many laxatives based on the constipation from the gemzar from two years ago. My hair is starting to feel like straw. Just hope our donkeys don’t mistake my hair as feed. :-)

    I start my shots on Monday for the next three days. Even after all the shots I have had, I am still a wuss when it comes to needles.

    To the grumpiness, I wish people would understand and let it go. My family is still mentioning the change in my attitude sometimes. They don’t seem to understand I am not doing it on purpose. Heck, I don’t even know I am grumpy at times. If I don’t go to the bathroom soon, then they can complain I am grumpy :-)

    My spirits are high. Knowing this is just something else God has given me to overcome. He won’t give me anything I can’t handle.

    Everyone have a great day

    in reply to: Sorry I haven’t written in a while #25843
    david-s
    Member

    I want to thank all of you for understanding. Everything you all have said from being in control of your life to not so much really hits home for me. I am the one that should be taking care of my family and now well….

    I hate being gumpy. Not really in my nature. The first go around really made me evalulate my life. Not taking things so seriously, live life to the fullest, etc.

    I told my managers today. They support my fight 100%. So my job is one less thing I have to worry about. Tomorrow, I will team my team members. I am bringing in ice cream cake. Should take the sting off a little. Ice cream always makes things a little better :-)

    Thanks again for all your support. Today has been a little tough on me

    in reply to: Sorry I haven’t written in a while #25836
    david-s
    Member

    Day 2 after chemo. Boy I felt lousy yesterday. I couldn’t believe it was bad this soon. Two years ago it took a few days. Today I feel much better.

    Last night a family member told me I was grumpy. I snapped and now feel real so bad about it. I said I am dying of cancer what do you expect. I never had an outburst like that last time. Hopefully this will be the last outburst like that. I am sure it sounded like I was giving up. That will not happen. Kicked cancer’s butt once and will continue to do so.

    Its so nice being able to just put a post up here. Makes me feel like I can really discuss things that no one else understands.

    Thank you all and God Bless each of you

    in reply to: Sorry I haven’t written in a while #25834
    david-s
    Member

    Kris – Encourage to hear that you survived after the reoccurrence. That gives me strength. My oncologist believes that no one should be given a time limit on life. I asked today and he said I knew better then to ask. I did but still I wanted to ask.

    I am in Stage 4. I started the Gem/Cys treatment today. 6 HOURS of sitting. Glad I have a port.

    I am now eligible for 1 trail. I don’t recall the name. It is being conducted by NCI only in Ohio. The bad thing is that to be eligible for the trial, I can’t make any progress under this treatment.

    Thanks for all the kind thoughts. I beat this two years ago and like you Kris, with the Good Lord’s blessing I will be around for many years to come. This is just another bump in the road.

    My prayers have and will continue to be with everyone on this great site. It offers strength and hope.

    in reply to: Sorry I haven’t written in a while #25829
    david-s
    Member

    Hello everyone. I am back and so is the cancer. We found out almost two years to the day of my post-op physical. They see four tumors throughout my abdomen.

    I have been battling CA-19-9 marker numbers in the 40-60 range since I went into remission back in March of 2009. I had my normal scans in Feb/June/September of 2010. February and June’s scan was reported normal. The September scan showed activity. They compared the September scan to June and it was there. (They missed it) Then they compared February’s scan and it was clean. I then had a PET/CT in September. It showed activity. I had another CT last Friday and they confirmed everything.

    I let my oncology team guide me through this. I see my oncologist tomorrow for the plan. I am now taking my care into my own hands. This will be a partnership from here. My surgeon is recommending a Gemzer/Cisplatin treatment. My surgeon also said I am eligible for a trail at UC. Not sure if I will op for the trail or go straight to a known treatment. Surgery is not an option anymore.

    Tomorrow is two years since my first chemo treatment.

    Well, here goes another battle.

    in reply to: Waiting is the pits! #31915
    david-s
    Member

    Louise,
    Gosh, di I know how you feel. Our prayers are with you. Hopes for a clean PET

    in reply to: Sorry I haven’t written in a while #25828
    david-s
    Member

    Thank you for all the goodness coming my way. I have my ups and downs when my doctors are involved. Your words put me at ease and help me battle this thing. All of you know how helpful you are to everyone on this site. Without support, we would be lost. Thanks again for supporting me!!

    in reply to: Sorry I haven’t written in a while #25823
    david-s
    Member

    Saw the oncologist today. My PET was negative (Thanks for all the prayers). My marker is now down to 24. They think that my nausea was due to the massive surgery last year to remove the cancer. They also think my stomach enzymes were causing the marker numbers to go up. The reglan they put me on has helped the nausea and the marker numbers.

    Too bad they did not listen to my complaints back in March when the nausea started. Water under the bridge at this point.

    I go back in six weeks for another blood test then back on the three-month oncologist visits.

    Today is truly a great day. A big weight has been lifted off my back. Thanks again for all the thoughts and prayers. It really helped

    in reply to: Sorry I haven’t written in a while #25820
    david-s
    Member

    Unofficially, my PET scan was negative. My oncology nurse told me. I had also sent the CD to our daughter-in-law and she had her team’s radiologist look at it. He confirmed it was negative. Did more blood work today. Those results will be back Tuesday when we see the oncologist.

    Can this cancer be so small that the makers pick it up but scans don’t?

    Not sure what the next steps will be. I guess I will know on Tuesday. I would do another round of chemo before I would let them go back inside me

    in reply to: Sorry I haven’t written in a while #25818
    david-s
    Member

    I had my follow-up yesterday with my oncologist. The CT is “inconclusive” two radiologists looked at it and said they can see inflammation. Numbers were at 64.4 last week. At least “inconclusive” isn’t bad news. More like no news must be good news.

    It’s like a light went on. I was asked how long have you been nauseous.” Reply “Look in your records. I have been this way since stopping chemo.”I am on raglan now for nausea and Ativan for nausea and anxiety that I don’t realize I have. The Ativan wiped me out yesterday. No more of that only at bedtime.

    Today a have a PET/CT at 5:00 PM. The plan after that is give the meds until next Friday to work. Blood work on 2 Oct and follow-up with results on 6 October.

    Options were discussed. If nothing is found by the PET/CT and my blood levels keep rising, my oncologist will talk to my surgeon about exploratory surgery. I am not keen on them going back inside me. Still don’t know other options. Maybe just start chemo again and watch the blood numbers?

    If the PET/CT sees something, develop a plan of chemo and or radiation. Maybe surgery. Still don’t like the idea of then going back inside me.

    That’s it for now. I will let you know if I hear anything on the way. If not, I will post again with the results and game plan on 6 October.

    Feel free to comment on what you think are options. I am all ears.

    in reply to: Sorry I haven’t written in a while #25816
    david-s
    Member

    Had my CT today. Results this Friday. You would think they would make a better tasting liquid to drink for the CTs.

    We got back the cancer maker that was taken this past Friday. It jumped another 17 points. I am at 64.4.

    I will let you know the CT results on Friday. Here’s hoping it’s nothing.

    in reply to: Sorry I haven’t written in a while #25813
    david-s
    Member

    Updates:
    July 26 I was vomitting so they admitted me. A big discussion between my PCP, surgeon and Internal Med doctors on who should take care of me. The Internal Med doctor took me. No news from the EGD so must be good news.

    I had my three month check-up today. My CA-19A went up another 30. March was 11, June was 17, Sep 47. The doc felt a hard lump in my neck. He is finally concerned with my nausea, cramps and fatigue. One thing might not be much but putting everything together might. CT on Monday now. He said I can go back on the Kitril for the nausea. It helped during chemo. He also prescribed compazine.

    Yesterday we had to put our dog of 14 years down. She also had cancer. She had Hemangiocarcinoma. (Spleen).

    Not a good way to end the week. I follow-up with the doctor next Friday. I hope the worry is for nothing. If it has come back, I honestly don’t know what I will do. I don’t think I can handle another big surgery. Chemo wasn’t to bad last time. I just hate being a cancer patient. Just a big mental blow. Sorry I am going on about this.

    I will send an update next week. Thanks for listening!!

    in reply to: Experiences with Gemzar as solo agent #31099
    david-s
    Member

    I was on a 3 week on, 1 week off plan. I took Gemzar alone. I was also given a steroid; it makes the body handle Gemzar better. My first treatment I was very nauseous. They gave me anti-nauseous pills to take after treatment but did not. After that, I took them and had no problem. My hair thinned but I did not lose it. I was constipated the first week but used a stool softener and a vegetable laxative and that worked fine. Because of the steroid, I was hungry after treatment and went to an all you can eat buffet. I ate healthy just a lot of vegetables and fruit.

    My veins did collapse and I had a port put in. It is the best thing as long as they numb the site before they insert the needle for treatment or blood work. I went to two different hospitals and they did not numb the site. Very painful but I do not like needles anyway. I wish I had the port when I was in the hospital for 36 days.

    If I had to repeat chemo, I hope it is with Gemzar.

Viewing 15 posts - 1 through 15 (of 46 total)
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation