Friday, May 16, 2014

New Hope . . .Bodaecia Rising

Since my last post in January, things have gone from bad to worse and it has been an extremely difficult time.  Many times, I tried to begin a post but I was overwhelmed by how I was feeling and the frightening fact that the drugs were failing me and my lambda light chain was going up at a precipitous rate. My warrior spirit had left me and I was beginning to feel defeated.

In my last post, I was on 200 mg of thalidomide along with dexamethasone.  I felt postively toxic and never felt well and at times, I felt like a toxic dump. To make matters worse, my lambda light chain kept going straight up along with the beta 2  microglobulin number. The thalidomide was having no effect on the myeloma and after one 28 day cycle and part of the next cycle, my doctor stopped that regimen.  My creatinine was creeping up and being watched carefully.  

My next plan included a 21 day cycle of 20 mgs of revlimid daily  along with dexamethsone.  I continued to feel toxic and the creatinine was still misbehaving.  I was ready for the week off after the 21 days, thinking I would start feeling better.  That was not to be.  Each day I felt worse and by the fourth day, I knew I needed to get into the doctor and soon.  I went the next morning and by afternoon I was in the hospital with acute renal failure.  They flooded me with fluids and transfused me and on the fourth day I was able to go home.  My doctor reduced the revlimid to a much lower dose: 10 mg every other day.  On April 22, I was hospitalized again because my calcium had become dangerously high and I was still in acute renal failure.  Again, I was flooded with fluids and transfused.  This was followed by:


- A kidney ultrasound which showed that my kidneys did not look damaged.

- A kidney biopsy that revealed that the myeloma was sending proteins to gather in the kidneys and that was causing the failure.

-A bone marrow biopsy which revealed that the myeloma burden in the bone has risen to about 70%.  This has caused my wbc and rbc to have taken quite a prolonged dive. My white count has hovered from .7 to about 1.6 for about three months.  However, yesterday, the wbc was 2.9!

- Next, my feelings of toxicity were validated because the toxins were unable to be processed out of my body and the residue was still in there swirling around. It was determined that kidney dialysis was in order, so I had surgery to place a hemodialysis catheter.

-Another phase of treatment was to begin plasma phoresis.  This process uses a centrifuge like is used to separate out platelets, stem cells. etc.  The goal of plasma phoresis is to remove the proteins from the kidneys that are impairing the kidney functions.

- While I was still in the hospital, I began dialysis and plasma phoresis.

- I was released after nine days, but have been going back to the hospital to continue dialysis and phoresis.

Last week my outpatient schedule looked like this:

Monday, 8:00 AM -  Four hours of dialysis 
Tuesday1:00 PM -  Two to three hours of plasma phoresis
Wednesday, 8:00 AM -  Four hours of dialysis and two units of blood
Thursday, 1:00 PM -  Two to three hours of plasma phoresis. (This  turned out to be a seven hour day....a long story.)
Friday, 8:00 AM -  Four hours of dialysis

I had seven plasma phoresis treatments and am finished with those.  But the dialysis continues on Monday, Wednesday and Friday.

In the meantime, my oncologist started dexamethasone again at 40mg each day for four days and then four days off and repeating that.

I have been feeling much better lately even if I am  being "propped up" by dexamethasone, dialysis, and transfusions. I even baked bread yesterday!   However, there have been some dark days especially when I was still  in the hospital. I felt like I was nearing the end and starting to think about things like not making it to my 45th anniversary in June, attending my  50th High School Reunion in the fall or finding out how the last season of Mad Men ends.  Of course, there were many other much more important worries and laments that were troubling my emotional state. It was the worst of times.

My oncologist was adament that I go back to Seattle Cancer Care Alliance (SCCA) which includes world renowned Fred Hutchinson Cancers Research Center. In 2010 I had my autologous stem cell transplant there.   I was able to get an appointment with Dr. Bill Bensinger who is their myeloma expert and guru.  He has been prominently featured a in number of Patient Power videos with Andrew Schorr.  That appointment was today and I feel like I have a new lease on life.

It was an encouraging and uplifting consultation as we reviewed my case and discussed possiblities.  His recommendation is a combination therapy with two new drugs, carfilzomib and pomalidomide along with dexamethasone.  He indicated that it has been an effective combination in a high number of cases and he was confident that it could help me. This may also allow my kidneys to improve their function if the myeloma is being beaten back.  No guarantees on this but I am hopeful.   He said this combination has the ability to get patients back into remission and if not remission, close enough that an autologous stem cell transplant  could be the next step. I still have 5 million stem cells in cold storage at SCCA and we can follow up the combination regimen with a transplant if necessary.

It was the best of times today.  We left Dr. Bensinger feeling there was hope again and that has been sorely lacking over the last few  months.  Today, I began  to feel my inner warrior emerging again.....she has been absent for months.  I think I'll call her Bodaecia after the Queen of the Iceni who led a revolt against the Romans in ancient England.  She was a fierce warrior and that is exactly what I need to be as I enter this next phase of fighting this insidious disease.

Bodaecia
by
GnarlyCranium


20 comments:

  1. Carole Leigh, I have been so worried about you. I can relate with the renal failure. My creatinine is creeping up as well in spite of the chemo infusions (Rituxan). Then I came down with a bad case of shingles, due to the Rituxan knocking my already suppressed immune system even lower. The shingles came after a 12 hour bout of vomiting following the fourth infusion on May 1st. I was thinking of my last wishes about that time. The shingles are going away but I still have residual pain and may have it for awhile. My most conservative doctor, after sending me for labs this week, told me to go ahead and go to Hawaii with my family and I kinda felt as if it was granting a dieing wish! Not to be overly dramatic or anything like that. I hope things are looking up for you. It sounds as if you have the right doctor with the right plan of action. I am happy about that. I don't know where I am headed with my kidney failure but I know all my doctors are concerned. I did get a little improvement after the infusions in October and perhaps that will happen again if I am lucky. Good luck to you and keep fighting! Love to you. Doris

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    1. Back in our days together at Cascade Elementary we could never have imagined that both of our lives would lead us to where we are today medically. Isn't it wonderful that we can't see ahead! I am so glad you got to go to Hawaii and see Beazy. I hope your trip gave you a good boost and you have recovered from your shingles. Much love to you. CL

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  2. Bodaecia would envy your spirit, Carole Leigh! Gathering ebbing energy to bake bread, the simple desire to make food for your family rather than snatching it from a grocery counter, describes your love for those who share life with you. Live with hope. You are strong and brimming with a kind and gentle innocence of expectation. Blessings.

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    1. Thank you for this uplifting comment. Blessings to you, too!
      CL

      PS I'm baking cinnamon rolls today!

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  3. HELLO. BODAECIA!!! I am so happy to hear you have arisen from the depths of despair and feeling so awful for so long. and you baked bread !!! living with hope is so powerful, a mighty shield and another kind of good medicine - for mind, body, and soul. EM to follow...

    much love,

    Karen xoxo

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    1. Karen,
      I am feeling better and living with hope AND I am baking cinnamon rolls today. EM to follow...
      CL

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  4. Carole Leigh - it is wonderful to read all that you have shared and MORE wonderful that you have the energy to share with such depth of these many months of a myriad of emotions and physical challenges.

    Bread - the staff of life - baking it, eating it, nourished by it - so indicative that this is the one - perhaps first - tangible entry back to a more hope-filled time. May you bake many loaves in the days to come!

    xo Lynn

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    1. Lynn,
      I love your line about baking bread, "...tangible entry back to a more hope-filled time." Intuitive and so true! I can't tell you how happy I am that you are feeling better. I am going to look forward to seeing you at the September ADK meeting at Sally's!
      Much love,
      CL

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  5. Mary Jane HendersonMay 16, 2014 at 3:03 PM

    Thank God and your new doctor for things taking this positive turn. You are a warrior and have an amazing spirit. I send you love, prayers and good wishes along with so many others. Mary Jane

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    1. Mary Jane,
      Thank you for your prayers and good wishes. Congratulations on a successful term as Alpha Delta Kappa Idaho State President. I know you were wonderful!
      Love to you,
      CL

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  6. After you called me the other day I found myself on my knees in daily prayers and with tears. I know our Lord will be there with you and that the positive, power of prayers from many will be with you and help you throughout this time. As we have said time and time again, if only we lived closer. I would do anything to help..hey, I am the queen of take out! I'm with you in spirit and in faith my friend. My love, hugs and prayers.

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    1. Linda,
      Your heartfelt words mean so much to me. I cherish our long time and long distance friendship and all the wonderful memories of the times we have had together. You and I, my friend, share a rich history. I look forward to the day when we can go on an epic shopping spree again.
      My love and hugs to you,
      CL

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  7. Hope you know that was me...Linda Rissel

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  8. Carole!! I am so glad to see a post from you! As we know, when we don't see a post from our MM blog buddies... we all worry so much! wow what a torturous journey you have been thru, but you are such a warrior queen! Thank goodness for all the recent positive progress you've made in your battle!!! You are so strong and have battled so much! You are my hero (heroine!) I've wondered why your Docs had you on Thalid vs Rev? And I am so happy your Docs are now moving on to some of the new generation meds! I'm sure you follow all the current research, and thankfully you are getting what it take to send MM out of your universe! What a crazy thing MM is, but sounds like you are in good hands and I hope to see more updates from you, as I miss reading your updates! Sending love, healing hugs and strength your way Carole. I think of you often, and I hope all the new treatments send MM packing so you can celebrate your 100yr anniversary!!! Love and hugs, Julie

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    1. Julie,
      I am feeling a lot better now and have had my first two carfilzomib infusions and I start pomolidamide today. After the last few months, it is so good to feel hopeful again. My outlook is so much improved and part of that maybe that I am reconnecting with the warrior within! I had been on thalidomide during my first round of chemo back at the beginning and it worked well for me, so it seemed to make sense to try it again at a higher dose. I hope you are doing well with your treatment and making good progress. We have so much in common with our MM journeys and I am so thankful that we connected. You are an inspiration to me....we need each other. :)
      Love to you,
      CL

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    2. Hi Carole, I have been checking back regularly for your update. Hoping your new meds are pummeling MM out of your universe. You are in my thoughts and heart all the time, and I look forward to hearing from you or seeing an update. You are an inspiration to me! Love, hugs and friendship, Julie xoxo

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  9. Sheri from IdahoMay 19, 2014 at 1:13 PM

    Carole, your story sounds familiar. But I didn't know I had MM until we discovered the kidney failure. Kidney ultrasound looked good, but kidney biopsy showed the proteins clogging everything up. A week later, bone marrow biopsy showed the cancer. I had a peritoneal dialysis catheter inserted and did PD for 2 years. They said plasma-phoresis wouldn't work for me, and that my kidneys, most likely, would never get better. Never give up, because 2 years later, my kidney function increased enough for me to go off of dialysis. My kidney function was at 8% when it all started, and when I got to 15%, my Dr. said I could stop and see what happened. Well now it has been 7 months off dialysis and last week my GFR was 18%! I hope things continue to improve for you, and don't lose hope!

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    1. Sheri,
      Thank you so much for your comments. Sharing your story has given me such renewed hope that it is possible to regain my kidney function and I am just so happy to know that you are doing so well with yours. I will never give up hope.....your example will keep me going! Thank you...thank you.... :)
      Love to you,
      CL

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  10. Carole! I think about you all the time and worry when you don't update your blog :/ Hoping you are doing ok, and just too busy to check in here! I also emailed you. When you can, let us know how you are, and how your treatments are going. You inspire me too :) Love and supportive hugs! Julie xoxo

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