The journey starts

Discussion Board Forums Introductions! The journey starts

Viewing 15 posts - 31 through 45 (of 65 total)
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  • #33046
    tchoskins
    Member

    Tom,
    Hope you are doing well. I’m a patient too. My journey so far has been almost the reverse of yours. The Left lobe was resected in July of 08. Then I had 28 days of targeted radiation and a chemo pill called Xeloda. In May of this year I had a chemoembolization. Next was gemzar and cisplatin for about 4 cycles. The Dr. is switching me to a 5-FU and Oxaliplatin combo soon. He is trying to get the insurance straightened out.

    Good luck and keep us posted.
    Tom from Denton, NC

    #33045
    tomf
    Member

    Lalupes, it looks like your sister and I are on the same schedule. My next cycle starts tomorrow. I was a little concerned when I met with my Onc this morning. The results of my CBC last Thursday showed that my platelets were low (80), which meant they would either delay or change my treatment tomorrow. So they stuck me again and did another CBC. From Thursday to today, the platelets increased to 400. All the other checks were also back to normal.
    I did find out that I am a good candidate for the Sir-Spheres. So unless things change, I will finish this cycle. Then wait 2 weeks to get the chemo out of my body and get on with the Sir-Spheres. They said the Gemzar hs to be out of the body before the SIRT. They are also checking with the Insurance for coverage.

    My weight seems to have leveled off. What I have been doing is eating when ever I think about it. Not very much at a time, just constant. I try to drink a Boost in the morning and another in the afternoon. I’m on colesterol medicine, but for now I don’t worry about stuff high in colesterol. I love vanilla milkshakes. One thing I do not care much is for foods high in sodium.
    I did notice yesterday that my hair is starting to come out. Not bad yet. I’m going to hold off getting a buzz and see if it just thins or comes out in patches.

    #33044
    lalupes
    Participant

    You sound to be doing well indeed, Tom. I’m really, really pleased. I heard about Sir-Spheres for the 1st time last week & I want to raise it when my sis & I see her Onc on Monday, She’s had her week off Gem/Cis this week, too. She starts her next cycle on Wednesday.

    My sister takes Fortisip Plus to help with getting her weight up – what are you on to help?

    Pam – Thanks for mentioning Biotene; I’ve checked it out & found it in Boots the Chemist. My sister’s mouth is incredibly dry but not particularly sore yet. I’ll bear it in mind in case she needs more help with the dryness.

    #33043
    tomf
    Member

    It’s been a while since my last update. This week was my off week of Gem/Cis. Feels good not to be tired all the time. Was able to take some walks and get a little exercise. I did go see a Interventional Radiologist to talk about a Sir-Sphere. It’s not scheulded yet, but we are talking about January. They want to try and shrink it as soon as they can so it can be removed. The plan is to eventially remove the right side of liver along with bile duct and gall bladder in March/April time frame. They are still after me to eat more and not loose any more weight. I have been eating more this week. Still no hair lose, no nausea. It’s been a couple weeks without a blood test. The next CBC will be Monday.

    #33042
    cherbourg
    Participant

    Tom,

    I forgot to mention that one of the things that my mom’s doctors recommended for mouth care was the biotene line. They make a toothpaste and mouthwash that can keep your mouth and tongue from getting sore and uncomfortable. You can purchase this at most drug stores. (We got it from KERR drugs and Walgreens. It worked well for Mom.

    You continue to be in my thoughts and prayers.

    hugs,

    Pam

    #33041
    tomf
    Member

    It’s been a few days since I have posted any updates on my journey. Not much new happening. Probably ate to much over Thanksgiving, but what the heck, my nurses said eat any thing anywhere any time. I was a little constipated about a week ago, but with the prunes, grapes, liquid I’m ok. Still no nausea which is good.
    This is my off week of treatment, so not sure what to expect. I’m mostly just tired. Usually in the morning I feel jittery/nervous.
    I have appt with a interventional radiologist this Thursday to discuss a possible chemoembolization after 3-4 cycles of Gemzar/Cis. Removing the tumor and right side of liver is another alternative being considered.

    #33040
    tomf
    Member

    Hi Cherbourgh.

    I’m beeing treated at CMC in Charlotte. I find it interesting on how they work. I have a Onc that is my direct contact. She has a team of specialists that meet every Monday to discuss things. There is a surgeon that all he does is liver surgery. There is another doc that all he does is UltraSoundEndoscopy. Also there is a Interventional Radiologist that I see. My name comes up every Monday on how things are going, what things to try in near term and further down the road. I just finished my 2nd Gem/Cis treatment yesterday and all went good. They want me to try to eat more smaller meals to keep from loosing weight. May not be a problem tomorrow. Should have turkey and all the trimmings.

    Stll no major side effects. Had some mild indegestion last week, but eating less qty and more meals seem to help that. No problems the last 3-4 days.

    The 6 hours it takes to receive the treatment seems to take a load out of me. Really bushed when I get home. Still kinda tired today, but I seem to feel better if I am up and doing something.

    Now I am off a week and start my 2nd cycle on the 8th of December.

    I hope everyone has a super Thanksgiving and forget about this terrible disease for 1 days and can enjoy their families and friends.

    #33039
    cherbourg
    Participant

    Welcome Tom!

    I’m sorry you had to find us but it’s nice to meet another North Carolinian! (or as we say down here on the coast….Nawth Cacalackey!

    May I ask where you are being treated? My Mom was treated during her illness at Duke. (Greensboro is home for my family).

    Do you have a port? My Mom had one and it was wonderful as she progressed through her treatments. It’s sounds as if you have wonderful doctors.

    Come here often! You will meet some of the most kind, considerate and compassionate people from all over the world.

    Hugs to you and your family!

    Pam

    #33038
    marions
    Moderator

    Tom….smooth takes on a different meaning doesn’t it? Something as simple as reducing the flow of the chemo can make a difference of feeling good vs. not so good. I am glad that it worked.
    I hope that your hunger will kick in on Turkey day.
    Best wishes,
    Marion

    #33037
    tomf
    Member

    Thanks Marion for the input. What I have been trying to do is fill 2 x 16oz bottles of water in AM, 2 more in PM and another 2 at night. Currently the tongue issue is minor. Nothing major, but I will keep the candy man handy. I’m just about finished with Gemzar. What I found last week and the same thing this week is the Gemzar hurts when it goes in. All they did was slow it down and everything is ok. They started it on 500 and slowed it down to 400. I told them to remember that the next time I come in. Looks like I will skip next week and start another cycle again in 2 weeks. From what I can guess my days will be Tuesday.

    As far as Turkey goes, we will be spending Turkey day with my daughhter. I requested turkey, dressing and gravey. She’s a good cook. Takes after her mom.

    Looks like they are coming to unhook me so I can go home. It’s been a long day. No way am I going to be hungry with all the stuff they have fed me today.

    Hopefully this week will go as smooth as last week. If you can call this smooth.

    #33036
    marions
    Moderator

    Tom….My husband sucked on hard candy. It helped combat the dryness of the mouth. And, remember the importance of fluid intake. It is difficult to gauge the exact amount taken in. This prompted my fill a

    #33035
    tomf
    Member

    Here it is Tuesday already. I’ve been at infustion for about 4 hours. Started off with blood test. All came out normal. The were checking for WBC, HBG and PLAT. Since they have to watch the kidneys so closely, I had a bunch of saline to start the kidney flushing. After that they added the anti nausea meds to the IV. Finally about an hour ago they started the Cis. After that will be the Gemzar. Should get outa here in about 3 more hours. They were concerned about my losing 5 lbs since last week. As a result my Onc nurse brought me lunch of about 1,000 calaries. Seems like Thanksgiving was a good week to come. Lots of good eats that the nurses fixed. Since the SANCUSO anti-nausea patch worked ok last week, my Onc gave me a prescription for more. It seemed to work since I did not have nausea at all.
    I did take the recommendation of eating prunes to assist in keeping me regular. They taste ok, and what the heck, if they work why not.

    The only thing I have noticed out of ordinary is my tongue was a little raw this morning and I have had a little dry mouth at night time. Still nothing major. I assume my hair will start thinning a little this week.

    I

    #33034
    gavin
    Moderator

    Hi Tom,

    Glad to hear that everything seems to be going okay. For heartburn, my dad was given Gaviscon. My dad also started eating prunes when he was in the hospital as they were always on the breakfast menu and has continued this to this day, but not as much nowadays. He also takes lactulose twice a day and has done since last year.

    Hope everything goes okay on Tuesday.

    Best wishes

    Gavin

    #33033
    marions
    Moderator

    Tom

    #33032
    lainy
    Participant

    Hi Tom. Mylanta seems to work pretty good. Also we have a search engine at the top of the page and if you type in heartburn I am thinking a gazillion answers will come up! You seem to be doing quite well, keep it going, keep it going!

Viewing 15 posts - 31 through 45 (of 65 total)
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