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Viewing 15 posts - 1 through 15 (of 61 total)
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    Morning All,
    Have had a rather difficult few weeks. In Aug and Sept I had a Squamus Cell carcimoma removed —twice. didn’t get it all the first time. Then a mass developed under my right ear/neck area. Since it was not MDS related my doc referred me to a ear, nose throat doc. After a biopsy we found the cells were atypical but no specific DX. C T Scan indicated there were several large lymph glands involved and the growth attached to the Parotid Gland/ HAd surgery on 11/6. After 5 hrs of surgery found an incision extending from the top of my rt ear down under my chin and forward about 4-5 inches. All told about 9-10 in. Also found 2 drains from the area behind and below my ear.
    Went in with HGB of 10.8 and plts of 10,000. HAd a six pack of plts before, another during and a 3rd after. 11/7 AM Ihad HGB ,at 8. Then around noon was at 7.0. Seems my counts took a radical downward turn. Did not feel that bad considering the drop in HGB. Last night had 2 units of Packed red cells (I/R of course). Have been on morphine for pain till last nite and switched to Percoset, Much more effective. Doc is due in a couple hrs and have a CBC coming to find out where my counts are this AM.
    To complicate matters further, had a Aranesp shot due yesterday. Tried to get it administered in the hosp. but no luck—yet. Seems the hosp pharmacy does not inventory it and there was some confusion about billing.Told them it would be covered under Medicare Pt B, but could see some reluctance to proceed. So today I am scheduled to have the drains removed and get released. My docs office is connected to the hosp. so will borrow a wheel chair and go to his office for the Aranesp shot today before going home. I warned them I kind of look like Frankenstein, but they thought they could move me in and out quickly. No CBC needed since they can pull one up from the hosp system.
    Am a little more than curious why my counts responded this way and what the future holds. Blood glucouse responded similarly. It has been over 270 with 2 periods around 100 -120.
    Next is 8 weeks of radiation 5 times a week and a PET Scan at some point during the radiation.
    Plan to spend a few days doing nothing other than to watch Adrian Peterson go after another 200 yard game.
    Sure hope the rest of you are doing better than I am.


    Hang in there buddy! Your body has been through a lot. It may be that your body was just so focused on healing from the surgery, it was too busy to make blood cells. Will be praying that now it can kick back in gear.



    Hi Zoe,
    Thanks for the kind thoughts. You could be on the money.The surgeon mentioned much the same. Another thought occured— have had quantum amounts of saline and antibiotics all IV. could be my cells are diluted by all the fluids. Really keeping them busy measuring output. will be curious to find out what my hematocrit is since it volume sensitive. would love to see it between 34-35.



    Get well soon. I am sorry to hear that you have been through so much lately.

    My Dad’s counts also dropped when he was on IV saline and antibiotics for Cellulitis twice during last summer. The doctors gave his body awhile to re-adjust before they got concerned over his low counts.

    Our hospital does not stock Aranesp either. When Dad is in hospital, we have to take his needles to the hospital and they administer them to him.

    Get lots of rest to allow your cells to rejuvenate themselves. Enjoy your football games. I hope that Adrian Peterson comes through for you.




    Dad’s counts were low when he was hospitalized and on IVs as well. They checked for internal bleeding and found none. Once he was off the IVs the counts rebounded.

    Take care and know that many people are thinking about you and praying for your quick recovery. You have been such a source of information, strength, and hope to more people than you can even imagine.




    Our prayers and best wishes go out to you.

    I am curious as to how the squamous cell carcinoma was detected – a regular dermatology check up or by you? Proof positive that we also have to monitor other aspects of our health.

    Please keep in touch with us, BUT also stay rested. I hope your man, Adrian Peterson does well, EXCEPT when he is playing the Lions smile !



    Positive thoughts coming your way with prayers going up for you. You have been such a blessing to all of us on this forum. I know I speak for many who only want you to rest, relax, take care fo yourself and feel better soon.


    Hello niel sending you a big bowl of chicken soup
    Prayer and love …take care of yourself… wink


    Hi Mary,
    The first Squamus cell was found when I went in to have a dermatologist remove some pre cancerous lesions with liquid nitrogen. It was a larger spot than the pre-cancerous. When the dermo biopsied it , it was necrotic. I could touch it and it was wet. The parotid and lymph nodes were apparently a result of the orig spot metastisizing. The pathology report came thru a while ago. The parotid is squamus cell and he removed 34 lumph nodes, 27 of which were squamus cell. After the incision heals I will get a PET Scan to determine if there are any more cancerous cells forming at a cellular level then radiation 5 days a week for 8 weeks to kill off any possible cancer cells that might be forming.
    Apparently this is a result of excessive sun exposure I experience in the 1940s and 1950s. No obvious relationship to MDS. expect to be learning more as time passes.


    Hi, Neil!
    I was shocked that you had been through so much! Hopefully, you’ve weathered the storm by now and will soon be back to your “old” self. I am thinking of you and wishing you the very best.
    Your friend,


    hi neil

    hope things start getting better for you – you have always been the concrete holding this forum together – all your information really helped me and i am sure many others get to understand mds

    prayers are with you

    good luck


    Hi Neil, hope you are feeling better soon, and enjoy the game and lots of rest this weekend! (That Peterson sure is something!)

    All the best,


    I am also thinking of you and sending some positive thoughts and prayers your way. I bet the surgeon is right… your body has been focusing on something else and with a little bit of rest, you will be back to normal. smile Please keep us updated


    Hope all Goes well, you are in my prayers Neil.
    Keep us posted.
    God Bless


    Hi Neil,

    I found soon after diagnosis that your name on this forum meant reliable information, hope, and a link to positive thinking.

    May your treatments go well. Will pray for you.


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