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Deciding When to Retreat

Deciding When to Retreat

After three years since my first treatment for follicular lymphoma, my doctor and I recently decided it’s time for retreatment. I had a full response to Rituxin monotherapy in December 2015. Rituxin, a monoclonal antibody therapy, shrunk the 12 plus lymph nodes in my abdomen and along my aorta back to normal size. Unfortunately, at my six-month scan, the lymph nodes had started to grow again. I’ve been on watch and wait/worry for the last three years, and at each scan, they continued to grow.

No clear path

Treatment decisions about slowing growing or indolent lymphomas like mine are not clear-cut. From on-line forums such as Blood-Cancer.com and others, I’ve seen a diversity of treatment approaches for people at similar stages of this disease to me. There have been those who stay on watch and wait for years, and then those who doctors recommend they start out with multiple chemotherapy drugs.

Focus on my treatment goals

As a patient, it can be hard to know what is the best approach. For me, a youngish follicular lymphoma patient in overall good health with no other major health issues, I’m also focused on doing the least amount of damage to my body from the treatment since I will likely have multiple treatments in my lifetime.

So what’s a patient to do? For me, the decision came after multiple discussions with my doctor and focusing on the goals we set for treating my lymphoma. Currently, the enlarged lymph nodes are not compromising any vital organs, but I have persistent fatigue and abdominal pain that might improve from knocking them back. My doctor felt I could wait another six months but also supported a decision to retreat now.

Multiple factors considered

Ultimately, I decided to retreat now versus waiting another six months. This was based on a mix of medical, practical and emotional reasons. First off, I’m hoping the treatment will eliminate or improve my fatigue and pain. I decided it seemed ridiculous to suffer from those for another six months. On the practical side, I didn’t want to do the retreatment in the summer. It’s my favorite time of the year, and my kids are home for school. A month of getting treatment and recovering from it when we could be at the pool or on vacation didn’t seem like fun to me. In January, I usually want to hibernate. Now I’ll just have a good excuse to stay in my bed binging TV shows.

Emotional reasons also valid

On the emotional side, watch and wait is hard. Just sitting back watching cancer grow in my body is challenging for me. I can intellectually understand why watch and wait makes sense, but I haven’t always been able to eliminate the anxiety it causes. Deciding to treat it and knock it back feels empowering. It’s like hitting a reset button, and it’s nice to know that I likely won’t need treatment for another few years.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dan122
    2 months ago

    Hi Terrilyn, how are you now?
    I’m in the phase you were on that post. Looking for the first retreatment. My first shoot was R chop. the only thing they do here in Brasil. after 8 months 3 lymph nodes are already growing. I decided to change the doctor. look for someone more updated. I’m also young, with young childrem and intended to see my grandchildrem. But I also expected more time to the second relapse. I pray.
    Did you follow Robert Miller’ FL diet?

  • Juliews
    4 months ago

    Hoping not to retreat any time soon. Got diagnosis of NHL follicular Lymphoma 12/31/15 after discovery during routine mammogram. Did watch & wait for 14 mos. Doc was waiting for the cancer cells reach 4 centimeters. I had several cells at 3.75. None were in organs but were in bone marrow, on trachea, aorta & inferior vena cava as well as in both sides of breasts, axillary & groin. They were also in my neck. Bloodwork was also indicating a high rate of inflammation above acceptable numbers.

    We did Rituxin & Bendamustine treatments 2 days per month for 6 months. Following the 6th month of treatment, my CT scan showed no signs of Lymphoma. Tests indicate that I’ve been cancer free for 18 months.

    Treatment seemed to make my energy level even lower than when I started treatment, but I’m THANKFUL for having no sign of cancer at present. Retiring Feb 1st so I can focus on doing things to improve my fitness & diet. I want to get the most out of this precious gift of life.

  • Ann Harper moderator
    4 months ago

    Have you started the pretreatment yet? I wish you good luck and hope you have many years before having to be treated again.

  • Terrilyn McCormick author
    4 months ago

    Hi Ann – I’m through three of the four weekly infusions. I’m hanging in there and looking forward to being finished.

  • Shelly
    4 months ago

    Hi Terrilyn,
    Your article hit home for me, as I also have NHFL, diagnosed & treated with R&B starting in Aug. 2015, finished in Jan. 2016. I had a CR until one of the 6 mo. CT scans (March 2018) indicated those pesky nodes were growing again. Unlike you though I have no other symptoms, so I’m on W&W and will continue with 6 mo. scans to check their growth. The most recent scan in Aug. 2018 indicated little to no growth. I’m grateful to be on W&W, as unnerving as it can be, as I’m looking at a SCT possibly for my second line of treatment. I so understand your decision to do the second line now, you’re having pain and fatigue, you want it gone. Curious what your second line of treatment will be … Rituxan again along with chemo? Or something else? Thanks for the article and I wish you the best possible outcome that is long(er) lasting than the first!
    Hugs, Shelly

  • Terrilyn McCormick author
    4 months ago

    Hi Shelly – Thanks for the kind words! My plan is to use Rituxin monotherapy as long as I can before turning to the bigger guns. I got three years from my first round of R treatment and will be thrilled if I get the same results this time. Unlike most people, Rituxin a tough treatment for me (lots of reactions and leaves me feeling lousy) but I’m sticking with it because my biggest treatment goal is to live with FL with the least amount of collateral damage from the treatment. R is by far the winner in that regard even if it doesn’t give me a long period of time before the growth begins again.

  • hammosa
    4 months ago

    Hi Terrilynn,
    I just wanted to say I really appreciate your post. So much of what you shared resonates with me. My Mantle Cell Lymphoma was caught early. I was offered the whole gamut if treatments in hopes for remission. At the time I was asymtomatic and chose to watch and wait. I waited until my lungs were filling with fluid and I couldn’t breath from the tumor wrapping around my aorta and trachea. I had palliative radiation done and the tumors all shrank back.
    So basically I did nothing for the first 5 years, now I have done some successful radiation. I tell you this because the path I chose has helped me to achieve my goal. I did not want to stay in the hospital. So far I haven’t spent one night there!
    Having the right to choose is empowering to me. You are so right about having to do what empowers us. No matter what treatment path we take, we choose! It is hard to not think about what’s next? Where is it going to rear it’s ugly head next. I do not want to allow it that power over me , so I try to stay as active as my body will allow.
    I am so grateful for you open and honest share and all the others on this board. It nice not to be alone in this journey. I have all kinds of support and love from family and friends, but not all truely understand. God bless you, Joanna

  • Terrilyn McCormick author
    4 months ago

    Thanks Joanna for your kind words. It is wonderful to have this forum where we can all share with others who “get it.” Wishing you all the best.

  • Yolanda Brunson-Sarrabo moderator
    4 months ago

    @terrilyn-mccormick So sorry you’ve had a time with this. I hope you continue the light in fighting, and eliminating the anxiety that hasn’t moved you, but has empowered. Power on. Best!

  • Terrilyn McCormick author
    4 months ago

    Thanks so much Yolanda!

  • Daniel Malito moderator
    4 months ago

    @terrilyn-mccormick I completely understand. Timing is half the thing with illnesses like ours. It can cause anxiety and other issues just to wonder if it’s the right thing to do now or later. Great post. Keep on keepin’ on DPM

  • Terrilyn McCormick author
    4 months ago

    Thanks for the kind words, Daniel. Wishing you the best.

  • Bob McEachern
    4 months ago

    Hi Terrilyn.
    It’s kind of funny — when I read the title, I saw the word “retreat” as “pulling back” or “withdrawing,” not as “treat again.”
    But it’s just the opposite of pulling back, isn’t it? You’re taking charge and forging ahead.
    I hope that decision is empowering for you. I think it will be for a lot of others who read your piece.
    Thanks for writing it, and good luck with the treatments.
    Bob

  • Terrilyn McCormick author
    4 months ago

    This is why I love words — so many meanings! But as I read your comment while feeling so lousy from the treatments maybe it is also fitting to see it as a pulling back — retreat and then heal so I can charge forward! I’ve got one more treatment to go so I can see the end. Wishing you all the best.

  • CindyC moderator
    4 months ago

    I’m sorry to hear that your FL needs re-treatment. It would be nice if our cancers stayed in remission forever. I have multiple myeloma. I’m glad to hear that you and your doctor set treatment goals and your decision for re-treatment was based on those goals and conversations you had with your doctor. Being informed, engaged partners in our care is vital. Especially for cancers that you will have to deal with for a long time. Wishing you success in your new treatment protocol. I hope you find a good series to binge watch whole you hibernate.

  • Terrilyn McCormick author
    4 months ago

    Thanks for your kind words, Cindy! And I found a lovely series — Call My Agent. I’d highly recommend it even if you have to read the subtitles if like me you don’t know French. Wishing you all the best.

  • Nichola75
    4 months ago

    Hi. Like you I was only young (41) when diagnosed 2 years ago. Reading this was like reading a piece out of my own journal. I had radiotherapy on my parotid gland but am now on watch and wait as I have tumours in my abdomen. PET scan due in March. I completely understand that feeling of wanting to just attack it. I don’t think anyone understands just how hard watch and wait is. I agree that no one knows what’s around the corner but sometimes I feel like I’m just waiting for it to get me. However, treatments are improving all of the time aren’t they and that’s good news. I’m glad you are happy with the treatment plan, that’s what’s important as the emotional impact of follicular lymphoma can be so hard. Wishing you lots of special wishes during your treatment. Please let us know how it goes X

  • Terrilyn McCormick author
    4 months ago

    Thank you for your kind words. I’m through three of the four treatments and it’s been better than last time in some regards and worse in others. But the end is in sight! I completely agree with you that the emotional side of FL is almost as big as the physical impacts. Compared to when I was first diagnosed and treated, I know more about the disease and how it’s behaving in my body. My hope is that this time, I can put it a bit further out of my mind for at least a year knowing that the Rituxin worked and while my FL grows steadily, it also grows slowly. It will be interesting to see if I’m able to let it go a bit. Wishing you all the best.

  • Nichola75
    4 months ago

    Let’s hope we can both let it go a little X

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