A Little Background – Part III/Final

19 Aug
The past few days have been pretty good ones.  I’m definitely feeling the fatigue, but I’ve been able to work pretty close to full days every day.  I have periods of very mild nausea, but nothing too terribly bad.  Probably the most challenging part at this stage is the inability to eat much of anything other than plain foods.  My stomach just won’t tolerate anything with spices or much flavor.  My diet consists of things like mashed potatoes, baked potatoes, plain grilled chicken, turkey sandwiches, Jello, toast, cantaloupe, celery, oatmeal, Gatorade, and Ensure.  Foods taste different now and most things don’t sound or taste that good.  After losing a few pounds last week following the first treatment, I am at least maintaining my weight right now.

To wrap up this crazy long piece on the background of my diagnosis, here’s a little information on what it actually is, what my treatment plan looks like, and what I can expect in the future.

Diagnosis

My official diagnosis is stage 4 indolent b-cell follicular lymphomain the kidney and skin.  (Stage 4 sounds scary, but hold on and I’ll explain what that really means in a minute.)  Dr. Daniel believes the kidney is most likely the primary source of the lymphoma with the skin being a secondary location.  When receiving a cancer diagnosis, there are two important factors that help the doctor determine the proper course of treatment:  the grade and stage of the disease.

Grading is typically either low, intermediate, or high.  Mine is low grade (indolent), which means that it is slow growing (not aggressive).  This is good news; however, indolent follicular lymphoma is not currently a curable cancer.  It is considered a chronic cancer that will most likely appear again either in the same location or another location.

Staging for lymphoma has four levels.  Mine is stage 4 because 1) it involves an organ and 2) because it is in more than one location with one of those locations being above the diaphragm and the other location being below the diaphragm.  Stage 4 lymphoma sounds terrible, but is not quite as awful as stage 4 when you are dealing with systemic cancers that have metastasized throughout your body.  Staging in lymphoma has more to do with the location of the disease than how advanced or aggressive it is.

Treatment Plan

Dr. Daniel selected Rituxan and Bendamustine as the drugs of choice for my treatment.  Rituxan is monoclonal antibody that specifically targets only cancerous cells.  Bendamustine is more a general drug that goes after fast growing cells, but it does not strictly attack just cancerous cells.  Bendamustine is more of a traditional chemotherapy drug that goes after good cells, too, such as the fast growing cells in your stomach, mouth, and hair.  When used in combination, these two drugs have proven to be very effective at pushing non-hodgkin’s lymphoma into remission.

These two medicines are somewhat mild compared to some chemotherapy drugs, and the side effects are not anticipated to be as severe as what many people experience.  Fatigue will be my greatest challenge, followed by mild nausea, flu-like symptoms, loss of appetite and nasal congestion.  Dr. Daniel feels it is not likely I will lose my hair, but it is a possibility.  Most likely, my hair will thin a bit.  How much?  We just don’t know yet.  I expect to see something happen around the four week mark.

The goal of my treatment is to send the lymphoma into remission.  How long it will stay in remission, we don’t know.  It could be 10 years.  It could be 10 months.  If it recurs quickly, Dr. Daniel said he would likely refer me to a more specialized facility like Vanderbilt to be evaluated for a stem cell transplant.  The prognosis for me with indolent follicular lymphoma is another unknown that depends on how well I respond to treatment, how long it stays in remission, and what treatments are available when it shows up again.  It’s possible that some of the treatments currently in trial might be available by the time it recurs and they could actually cure it.  Let’s hope and pray that’s the case!

The treatment plan has me going for infusions (a round of chemotherapy) every four weeks for 4 – 6 times.  Basically, it means I will have treatment once a month for 4 – 6 months.  Treatments are over a two-day period, with the first day being a longer infusion and the second day being a short infusion.  My next treatments are scheduled for September 7 & 8.

The Future

It would be easy to freak out and worry about all the what-ifs because even though we have a diagnosis and have started treatment, there are still a lot of unknowns surrounding the outcome of treatment and remission.  But God doesn’t tell us to worry, He tells us not to be anxious and not to fear.  So that’s how I’m moving forward, with a faith in God and confidence that He is always in control.

I would love it if you would join me in praying the following:

  • Pray that this treatment regimine is effective and sends the lymphoma into remission for a long, long time.
  • Pray that four rounds of chemotherapy will be enough.
  • Pray that there is no permanent damage to my kidney either from the cancer or from the treatment.
  • Pray that a cure for all cancers will be discovered soon.

Oh, and if you don’t mind, pray that my kidney responds quickly so that the stent can come out soon!  Thank you very much.  :)

Hope you all have a wonderful weekend!
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14 Responses to “A Little Background – Part III/Final”

  1. Becky Robinson August 19, 2011 at 6:39 am #

    Thanks for your updates. Hope your day is good. We love you.

  2. Cindy E August 19, 2011 at 2:50 pm #

    Hey girl! Are you sure you aren’t in the medical field? I do this for a living and ‘oh my stars’ I could not explain that any better than you did!!! Just a suggestion for the taste thing- this is the time to try foods you have never liked, since everything taste different or bad you may discover new foods you like.
    Love you! Cindy

    • rachturner August 19, 2011 at 6:49 pm #

      Ha! You are too funny. All of my medical knowledge I got from you. And Google. ha ha

  3. The Savvy Sister October 19, 2011 at 1:51 pm #

    I read every word of your 3 part journey to the wonderful world of cancer treatment ( what is the word “treat” doing in that word?). Very nice writing! Since I speak the language of sarcasm, I understood every word without google translator.
    I am doing the praying you asked for. (great request) and I’ll be following your progress.

    Cheers!

    • rachturner October 19, 2011 at 8:12 pm #

      Thanks for reading my story and leaving me a note! Appreciate the encouragement. I just visited your blog and it looks like a great resource – so glad we’ve connected.

  4. Claudia Schmidt March 11, 2012 at 10:06 am #

    So you’re still in active treatment, at this stage? When will you be complete with the 6 months of chemo? I’m hoping you don’t have terrible side effects. I’ll now go read some other posts to get up to speed with where you are in 2012. Thinking of you. I’m not much of a pray-er, but will send out good thoughts into the universe for you (my way of praying). XO Claudia

    • rachturner March 13, 2012 at 9:00 am #

      Hey Claudia – I finished my first phase of treatment in January where I was receiving Treanda and Rituxan every four weeks. Because this is not curable at this stage, I am now doing maintenance treatments of Rituxan every 8 weeks for two years. I’ve had one so far and it was a piece of cake. Made me a little tired, but not sick at all. Thanks so much for the caring thoughts! I really appreciate them!

      • Claudia Schmidt March 13, 2012 at 8:23 pm #

        Hi Rachel,
        Well, I’m glad you’re not having any negative reactions to the Rituxan. It sucks that you have to do it for 2 years, but hopefully you will tolerate it fairly well. You’ve got a very strong and positive attitude which is great. I’ll be thinking of you. I’ll be “back” to visit your site…..take care!
        Best,
        Claudia

  5. J June 10, 2012 at 3:07 pm #

    I think attitude is everything and you certainly have a positive one. Just like my sister. :)

    • rachturner June 11, 2012 at 4:21 pm #

      Thank you so much, Jarie Lyn! Hope your sister continues to do well – I am so glad that she beat this nasty disease!!

  6. Marta Azuara January 28, 2013 at 12:06 pm #

    I pray for you, for my sister and for all the people who are going through this disease. Your story has moved me a lot, I understand the disease and has given me strength to go on.
    Love

    • rachturner January 28, 2013 at 4:47 pm #

      Thank you so much, Marta! I really appreciate your kind words.

  7. Marissa February 5, 2017 at 7:19 pm #

    Hello! My husband was diagnosed with follicular lymphoma cancer 5 years ago (stage 4). About 6 months ago, after 4 1/2 years of watch and wait, they found it has spread to both kidneys (very small). He has been undergoing Rituxan and we have a scan next month.

    Did your treatment course kill the cancer on your kidney?

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