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More About Moffitt Cancer Center In Tampa, Florida

Posted on February 14 2010 by Pat Killingsworth | 3,099 views

Yesterday I shared my first impressions of  Moffitt Cancer Center, which is just north of Tampa.  I found that, like Mayo Clinic in Rochester, Minnesota, Moffitt was a warm and welcoming place.  Moffitt is much smaller than Mayo.  It is easier to find your way around.  But what about the techs, doctors and nurses?

My visit last Thursday was an introductory one.  I met Dr. Melissa Alsina, her oncology nurse, Ally Zheng, and another oncologist, Dr. Kenneth Shain.  Dr. Shain was excellent and thorough.  He had reviewed my medical history from both Mayo and my local medical oncologist, Dr. Daniel Anderson, from Minnesota.  A short time later, Dr. Alsina introduced herself and her nurse, Ally.  All three sat-in on the 30 minute meeting which followed.  Dr. Alsina was quiet, yet engaging.  I believe she is originally from Spain, but her English is very good.  All agreed I should continue with my current course of treatment:  10 mg Revlimid 14 days on/14 days off.  No dex.  If and when my myeloma becomes measurable, Dr. Alsina suggested I consider a stem cell transplant (SCT).  No surprise there–SCT is Dr. Alsina’s specialty–and her RN, Ally, is a Transplant Nurse Specialist.  I countered with my plan to increase my dose and frequency of Revlimid to see if that might knock the myeloma back down–possibly even adding dex if necessary.  No one objected to this anticipated plan of action.  However, Dr. Alsina did point out that, with my worsening history of peripheral neuropathy (PN),  I may want to consider a transplant sooner rather than later.  “Why?” I asked.  “Because if your PN gets any worse, you may lose the option of using Velcade later.” she replied.  I understood immediately.  Velcade does have a reputation for being more likely to cause PN than Revlimid.  So, if I already have an issue with PN while using Revlimid, there is a strong likelyhood that trend would continue–or even get worse once I started Velcade.

I hadn’t considered the possibility that if I allowed my neuropathy to get worse by staying on Revlimid, I might lose the option of using Velcade, either before or after a SCT.  Multiple myeloma patients are often forced to make many difficult and unfair treatment choices, aren’t they!

I will share more of my thoughts about future treatment options on Sunday.  For now, let me conclude by adding how pleased I was with my new medical team’s first meeting!  Since Moffitt is more than an hour’s drive from my home, Dr. Shain and Dr. Alsina both agreed it might be a good idea to find a general practitioner/internist and possibly even a medical oncologist closer to home.  Pattie and I both thought that was pretty “cool”–showing a willingness to work with other docs outside Moffitt–and putting my convenience and welfare ahead of Moffitt’s business self-interest.  I was to return to Moffitt one week later for some baseline medical testing and a blood draw to check-out my M-spike, which had been present but not yet measurable on my last pathology report from up north.

Feel good and keep smiling–and may all of you have M-spikes too small to measure for many years to come!  Pat & Pattie

8 Comments For This Post

  1. V.S. Shivan Says:

    thanks for the medical information
    Quality Medical Transcription and Medical Billing Services

  2. Pat Killingsworth Says:

    You are welcome! Thanks for reading! Glad to help- Pat

  3. Gino Says:

    Re-send: Can I ask why you have resistd an ASCT as long as you have? GC, diagnosed 1/09, ASCT 11/09

  4. Pat Killingsworth Says:

    Hi Gino-
    How much time do you have? I wrote several chapters about my struggle with the decision if or when to SCT in my book, Living with Multiple Myeloma. I also have a number of posts about it on my blog, including one a few days ago–although I try to be sensitive to those who choose to SCT right away. Here are a few of my reasons: Most novel therapy drugs work after SCT, even if they stopped working prior to SCT. So, I figured I might add a few years to my "holding action" against mm–in other words, doubling my "alive time" by using drugs before and after SCT. The growing use of maintenance therapy also convinced me to wait. Why get a SCT if you are going to use novel therapies afterwards for mainenance anyway? What's the point? Now Mayo Clinic and a number of others (Moffitt in Tampa agrees) don't necessarily use maintenance therapy after SCT except in the toughest cases. But more and more mm centers are recommending maintenance regardless. I have a number of other reasons. But all of this is predicated by the fact even an ASCT is an invasive, risky procedure. True, there are worse. But I have a friend who went blind and a number of others who recieved no benefit or improvement. That is a lot of pain, fatigue and risk to endure if it doesn't work! I'm not anti-transplant. But my wife's goal for me is to use novel therapies without SCT until a longer term fix or cure is found. I'm neutral at this point and may consider getting one soon if my mm returns, as it looks like it will. Does that help? Gino, I have lots and lots of readers who have had transplants, or are very "pro" transplant, like most University of Arkansas Research Center survivors. I try not to go overboard–and I can argue both sides with gusto! How did yours turn out? E-mail me at [email protected] or call toll-free 866-336-1696 and let me know how you are doing, or if you would like to discuss/debate/get more specific. Glad to help- Pat

  5. Garfield Says:

    I got sick a little over a year ago and without the help of medical billing services, there's no way I could afford to pay for my treatments.

  6. Pat and Pattie Killingsworth Says:

    Garfield-
    Ever notice how healthy politicians with great medical insurance are quick to cut programs for others who aren't so fortunate? Pat

  7. Kerry Brodersen Says:

    I had a stem cell (autologous) transplant 3/9/12 at Stanford. Prior to this, I was on Velcade, and later added Revlamid, and my MM was progressing to the point where my bones were disintegrating and I had repeat compression fractures. I kept asking if I should be referred to a spine specialist, since I was shrinking. My doctor kept saying that they needed to treat the cancer first, and that the chemo was the tx. for the compression fractures.
    I started out at 6’5″, and dropped to 6’2″, and by the time I got to Stanford had dropped to around 6′. I was in severe pain, on heavy doses of morphine for the compression fractures and bone disintegration.

    Fortunately, the doctor at Stanford suggested a procedure called a vertebroplasty. This was done on an outpatient surgery basis, and the procedure took about an hour, with another three hrs. recovery time in the hospital. It was done in a unit called interventional radiology, but is also done in neurosurgery. It involves injecting epoxy into the vertebra to shore up the spinal column. This procedure was of major benefit in stabilizing my spine. I had lost t-6, and the interventional radiologist who did the procedure said it was good that I had got there in time. He was able to save t-5 and t-7 before they collapsed. If they had, I would be walking bent in half, looking at the ground.
    I think it is important for doctors to recognize that they need to focus on the total picture, rather than just tx. for the cancer. Had I been referred sooner, the dr. who performed the procedure felt he might have saved t-6 before it collapsed, and saved me from losing 5″ of height.
    Fortunately, I was tall enough that I could lose 5″ with only a slight hump as an outcome. However, if I had started out at 5’8, this would have posed more of a hardship.

    I would like to encourage you to keep yourself open to a stem cell transplant. It was the only procedure available to kill the cancer enough for my bones to re-calcify and heal. After the procedure, I gained back 90 of the 120 lbs. I had lost (I looked like a concentration camp survivor), and almost 2 years later, I am still in remission, living with my wife at our vacation house in Baja, Mexico. I chose not to continue maintenance tx. with revlamid, due to the difficulty in getting this medication in mexico, and my desire not to keep taking medication which has it’s own side effects (I have neuropathy in both feet, which is irreversible, but am basically fine).I know that w/o the transplant I would likely be dead, and would still be on morphine for the pain of all my areas of bone disintegration. I am now medication and pain free, and my bones have re-calcified.

  8. Pat Killingsworth Says:

    What a wonderful, hopeful story! Sorry it took so long to post. I have been having trouble with my comment screening system and important posts like yours sometimes get lost among the spam that isn’t being caught by the system. Blogs are a wonderful thing but complicated and delicate–and I’m not very strong technically. But I can spot a fascinating myeloma interest story a mile away! Good luck and keep us updated.

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