F. Linda Cohen, from Baltimore, now lives in Franklin, Michigan. She attended UMBC and attained her Masters’ Degree from Oakland University, Rochester, Michigan. Linda, a retired reading specialist, with a specialty in dyslexia, published a book documenting her parents’ story in February, 2019. Cohen’s book, "Sarinka: A Sephardic Holocaust Journey From Yugoslavia to an Internment Camp in America," is currently in the libraries of the United States Holocaust Memorial Museum in Washington D.C. , Yad Vashem Holocaust Museum in Israel, the Zekelman Holocaust Memorial Center and other community and school libraries.

Cohen was diagnosed with small lymphocytic lymphoma in 2009. 

Linda Cohen

Linda Cohen is a survivor of small lymphocytic lymphoma and was diagnosed in 2009. Catch up on all of 

I have had lymphoma for 15 and a half years — but who’s counting? I am! That’s for sure. When I was first diagnosed, I read everything I could about my chronic lymphoma. Back then, the average survival rate was said to be 10 years. That was many years ago. Recently, I decided to look again to see what’s being said today. Most sources now say that people can live for decades, especially if diagnosed early. That’s certainly a much more optimistic outlook than what I read 15 years ago. Blood cancers have benefitted from so much incredible research, leading to new treatments and medications.

I’ve been on Calquence (acalabrutinib) for two and a half years now. Some of you may be familiar with the new minimal residual disease (MRD) blood test. When my doctor first tested me, he told me it was so new that doctors weren’t even sure how to interpret it yet — there was no established protocol. I’ve now been tested twice, and thankfully, each time my numbers have gone down.

Three months ago, my doctor suggested I reduce my dose to one pill a day instead of one every 12 hours. I was hesitant, but he was concerned about some side effects, especially how easily I bruised. Then, at my most recent visit, he told me he’s actually taken some patients off the medication entirely because new research shows the cancer may not return for a couple of years. "It’s better to be off of it at this point, with your MRD number so close to zero," he told me. "It will come back, but you can always go back on it. Who knows how many years that will take? Being off the drug also has its benefits.”

I feel so good on Calquence — living a normal, productive life. I asked if we could wait three more months and do the MRD test again at my next appointment. I want to see what happens after being on a lower dose for a while. I wanted to see how my numbers were trending. My husband was ready for me to stop taking it, but my doctor heard my hesitation and agreed to wait until our next visit to decide.

Now, I find myself thinking about it all the time. Maybe this would be a good time to have my knee replaced since I’d have to stop the medication before and after surgery anyway; it acts as a blood thinner. Maybe I could start eating grapefruit again, one of the only foods I’ve avoided because it interferes with the medication. Maybe I won’t get as many infections — Calquence suppresses the immune system, and my white blood cell count is on the low side.

Writing CURE blogs helps me process all that I’m going through and I am starting to convince myself that I should take my doctor’s advice. Maybe now is the right time to stop this BTK inhibitor. It’s been killing not only my cancer B cells but all my healthy B cells as well.

I also want to emphasize how much writing helps me. That’s why I’m so grateful to my daughter, Jaime, for giving me my first ten-year journal over a decade ago. I’m now on my second one! It has just enough space for a few thoughts each day, with all 10 years listed vertically on one page. It’s not intimidating, and it’s so interesting to see what I wrote at this time last year — or even years before.

So, I’ll leave you with this recommendation: Buy a 10-year journal! (You can find them on Amazon.) And remember, buying a 10-year journal is a little like buying green bananas — it’s a sign of optimism.

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Articles

Living with lymphoma for over 15 years, the author reflects on the evolving prognosis and treatment advancements in blood cancers. Initially facing a 10-year survival outlook, recent research suggests a more optimistic lifespan, especially with early diagnosis. The author has been on Calquence, a BTK inhibitor, and is considering reducing or stopping the medication due to side effects and promising MRD test results. Writing has been therapeutic, aiding in decision-making. The author recommends keeping a 10-year journal as a symbol of hope and a tool for reflection.

After living with lymphoma for 15 and a half years, my doctor has suggested reducing the dose of my medication and possibly taking me off of it.

Going Off Medication for Lymphoma: Could It Be True?

For 15 years, I have lived as a lymphoma survivor, never free from anxiety and worry. Through great effort and discipline, I have learned to compartmentalize these feelings. It’s the only way I know to avoid wasting the precious time I’ve been given.

More than a year ago, a CT scan showed my disease had progressed. My doctor was almost certain it had transformed into a very aggressive type of lymphoma.

He prepared me for the worst, explaining that I would need intensive chemotherapy. I told myself I would do whatever it took. Before proceeding, he scheduled a PET scan to determine the most active area for a biopsy. The scan would show which lymph nodes had the highest metabolic activity, guiding our next steps.

When I saw my doctor’s name on my phone, my anxiety surged. I answered, bracing myself.

“I have great news!” he said. “You don’t need the biopsy! The metabolic activity in the largest lymph nodes is the same as in the smallest ones—there’s no increase. This means the disease has not transformed into a more aggressive type. What you have has worsened, but instead of chemotherapy, you’ll take a pill twice a day that will shrink your lymph nodes. There’s no explanation for this. I even consulted my colleagues, and they agreed. It’s like a miracle!”

I was stunned. I had prayed fervently, and I do believe in prayer. Sometimes my prayers are answered, sometimes they aren’t. My family and friends had prayed, too. We all knew the situation was serious, but I didn’t fully grasp just how serious. I was beyond relieved to avoid aggressive chemotherapy, but after that, I didn’t dwell on it.

I try to keep up with the latest research because knowing I still have options is important to me. Last week, I listened to a podcast about emerging treatments. The doctor on the podcast described exactly what had happened to me a year ago. He explained that in the past, when a patient’s disease progressed in that way, their prognosis was often less than a year. Then he discussed new treatments that are showing promise in clinical trials —treatments not yet available but hopefully coming soon.

I paused the podcast and took a deep breath. Until that moment, I hadn’t realized how grave my situation could have been. The weight of it hit me hard. A year ago, if the new enlarged lymph nodes had shown higher metabolic activity, my prognosis might have been devastating.

This realization made me appreciate even more how quickly cancer research is advancing. What wasn’t available for me a year ago may soon offer patients a longer future. It reminded me that, in my case, every day truly counts — more than I had understood at the time. That phone call from my doctor meant I was luckier than I knew, and I now recognize that it’s never too late to feel deep gratitude for every single day of life.

Living as a lymphoma survivor for 15 years, the author has learned to manage anxiety and cherish time. A year ago, a CT scan suggested disease progression, potentially transforming into aggressive lymphoma. However, a PET scan revealed no increased metabolic activity, sparing the author from intensive chemotherapy. This unexpected outcome, described as miraculous, highlighted the rapid advancements in cancer research. The author reflects on the importance of staying informed about emerging treatments and feels profound gratitude for each day, recognizing the significance of ongoing cancer research and its potential impact.

A year ago, I was told my lymphoma had worsened, but a miraculous turn of events spared me from aggressive chemotherapy, making me grateful for each day of life.

A Second Chance I Never Knew I Had After Lymphoma

I have shared that I have lived with small lymphocytic lymphoma for 15 years. I keep saying, “Cancer, we have to stop meeting like this. Just because I need to write a blog for this month and have no ideas, you don’t have to keep giving me new things to write about!”

When you have chronic cancer, every time something new appears, you worry…or at least I do. I was away for the holidays. My daughter and granddaughter, who was sick, arrived for a visit. There wasn’t a whole lot I could do about it. We were there and they had their airline tickets to join us. I should have put on a mask or distanced myself more, but I knew I would probably get it, regardless of what I did. I am so immune compromised that I have to have an antibody infusion every four weeks. I hoped that might save me, but of course, on day three I began not to feel well. I developed an unusual rash that was actually more like small lesions on my legs. A few days later, a sinus infection developed. I was concerned about the leg lesions because it was unlike anything I had ever seen. It didn’t hurt or itch. It resembled shingles, but I knew it wasn’t.

After taking antibiotics for my sinus infection and returning from our vacation, new lesions still appeared. I knew I should go to a dermatologist to check it out. Ignoring my own advice, I told my husband, “It’s just a rash which is most likely caused by a virus. You really don’t have to come for this.”

But being the supportive husband he is, he answered, “I’m definitely coming because every time I don’t go, I’m sorry.” Luckily, he didn’t listen to me, and he came.

The dermatologist came in. He began examining my legs (and now a few on my hands) very closely, asking me many questions. He told me it’s not a virus. We need to do two different kinds of biopsies from two different lesions. Of course, at that moment, I stopped listening. He said we will call you with the results in two or three weeks!

What? “That’s a long time,” I thought to myself!

Fortunately, only ten days later, the physician’s assistant called with my results. It’s called leukocytoclastic vasculitis. I had never even heard of this. Now, I have to see a rheumatologist who I’m told is the one who treats this.

So, my health saga continues. That’s why I say you have to have tough skin when you have cancer. Cancer has damaged my immune system, which is why I am so grateful for the immunoglobulin antibodies that have helped me stay healthy. I was always prone to sinus infections, but since having these infusions, it’s been much better. However, the doctor thinks this sinus infection triggered my new diagnosis. I’m not sure it could have been prevented. I was finally beginning to let up on wearing my mask unless I was in a small, crowded indoor area. Sometimes, as a patient with cancer, especially when I’m feeling good, I need to remind myself I’m not like everyone else who doesn’t have a compromised immune system, no matter how much I want to be. I still need to be extra careful for the rest of my life.

Living with chronic cancer, such as small lymphocytic lymphoma, presents ongoing challenges, particularly for those with compromised immune systems. Exposure to illness can lead to complications, as seen with the development of leukocytoclastic vasculitis following a sinus infection. Regular antibody infusions have been beneficial, yet vigilance remains crucial. The experience underscores the importance of maintaining protective measures, like mask-wearing, even when feeling well. The journey with cancer necessitates resilience and adaptability, as new health issues can arise unexpectedly, requiring prompt medical attention and specialist consultations.

Living with lymphoma for 15 years, I developed a concerning rash post-vacation, which led to a leukocytoclastic vasculitis diagnosis.







You Need Tough Skin With Cancer

It was the morning of my three-month checkup with my oncologist. My husband said, “Are you sure you don’t want me to go with you?”

I answered, “Absolutely no need. I’m feeling ﬁne. There shouldn’t be any issues to be concerned about, and my medicine is still working great. Just stay home and relax.” I meant every word of that.

Nine months ago, my doctor asked me if he could take my blood to obtain results from a newer diagnostic test. Three months ago, we repeated the MRD test which stands for minimal residual disease. It measures the number of cancer cells that remain in my body after treatment, even when there are no overt detectable signs of cancer. My results came back: The abnormal B-cells represent 0.12% of total cells. When my oncologist received the results, he texted me that it is almost the same as six months ago, but only better. His conclusion at that time was to continue on the same twice a day dosage of Calquence (acalabrutinib).

So, you can see why there was no reason to feel that I needed to have my husband with me this time. This “routine appointment” was to follow up and discuss how I was doing. I told him I was doing ﬁne … feeling great. Then he noticed how much redness there was under my skin on my stomach, which I attributed to the known side eﬀect of my medication. I explained that this was normal for me, and I know that one of the side eﬀects of Calquence is bruising easily. My stomach felt itchy that morning and I was rubbing it to alleviate my discomfort.

“Just from rubbing it?” he asked, looking very perplexed.

“And”, my oncologist continued, “You said this happens even when barely provoked?”

“Yes,” I responded. “I assumed this was the bleeding and bruising side eﬀect I had read about.”

After much thought and discussion, my doctor decided to cut my dose. He explained that he thought this was not a normal reaction. I knew he was concerned when he took a photo of my stomach.

Now, I was getting concerned. I was mad at myself for telling my husband not to come. Here we were planning a potential big change in my treatment. This was such a big appointment that I was now sorry my husband wasn’t with me.

I’m not sure why I have such a hard time with change. Not sure why it has always evoked an uncomfortable feeling within me… good or bad, but here I was facing this alone with no input from my husband, a retired doctor who keeps up with reading about my small lymphocytic lymphoma.

The decision was made to only take one pill a day from now on and see if this will diminish the redness and bruising that I have experienced. The hope is it will still continue to keep my lymphoma under control … enough. I’m concerned and a little worried because this change is huge to me.

The jury is out until the next time I check my MRD level.

You can be sure I’ll take a second pair of ears to my next appointment!

A patient undergoing treatment for small lymphocytic lymphoma reflects on a recent oncologist appointment. Initially confident, she attends alone, but unexpected concerns arise when her doctor notices unusual bruising, a side effect of her medication, Calquence (acalabrutinib). This prompts a dosage reduction to mitigate side effects while maintaining cancer control. The experience highlights her discomfort with change and the importance of support during medical consultations. She resolves to bring her husband, a retired doctor, to future appointments for additional support and insight.

At my routine oncology checkup, I regretted not bringing my husband when an unexpected medication changes left me feeling overwhelmed and alone.

Linda Cohen

Going Off Medication for Lymphoma: Could It Be True?

A Second Chance I Never Knew I Had After Lymphoma

You Need Tough Skin With Cancer

Always Bring a Second Set of Ears to Your Oncology Checkup!

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