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Anyone else have Mantle Cell Lymphoma?

Blood Cancers & Disorders | Last Active: Jul 27 1:20pm | Replies (118)

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @vivianr66 RChop consists of five drugs, (Rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP) followed by maintenance Rituximab. This treatment has been a standard frontline regimen in older patients with MCL for over a decade, according to ASH publications article https://ashpublications.org/bloodadvances/article/9/9/2302/535660/BR-or-R-CHOP-induction-with-rituximab-maintenance

As with any chemotherapy treatments, quite honestly, there can be side effects such as nausea, hair loss, possibly neuropathy, etc. However most often the side effects disappear after treatment and recovery. If all goes as planned, enduring those early months of therapy may add many more years of a healthy life for you. I was 65 at the time of my treatment for another type of aggressive blood cancer. It wasn't easy but so far I've bought myself another 7 years of a great life that would have been over had I not taken the opportunity.

You mentioned CHOP, so you may not be receiving the Rituximab (the R) portion of the treatment. The treatments generally have a cycle of every 28 days. The first week following, you may begin to feel more fatigue. By week 2 the side effects become more prominent with increased fatigue as blood numbers typically decline. It's normal to feel really sluggish. More importantly is to take your temperature daily to make sure you're not running any fever. As your blood numbers drop (along with the cancer cells) your immune system will be compromised. This makes you vulnerable to infections whether bacterial, fungal or viral. So mask up in public, avoid working in the garden as dirt carries fungal spores. If your temp ever reaches 100.3 you will need to call your oncology team for instructions. That may indicate a neutropenic fever that can come with low white blood counts.

The chemo you're taking does a great job of destroying the rapidly dividing cancer cells. Unfortunately it doesn't discriminate and kills other rapidly dividing cells such has mucosal cells in the mouth and digestive tract, hair follicles, finger nails, etc.
But remember this is temporary and a means to get you healthy again! Our bodies are meant to heal...sometimes they require some extra help.

Wishing you an easy day tomorrow. Though it may be lengthy at the infusion center. Take a little lunch or snack, water, entertainment like iPad, book, phone, etc (and a little extension cord for your charger). If you're having infusions, you'll have a little IV in your arm or hand. But the IV machine is portable so you're not stuck sitting in a chair all that time. You can get up to walk around, use the bathroom, etc.
What has your oncology team told you about your treatment plan? Will you please give me an update?

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Replies to "Hi @vivianr66 RChop consists of five drugs, (Rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone (R-CHOP) followed by..."

@loribmt Thankyou so much for answering! I will be receiving RCHOP and RDHAOx alternately for 6 times in 3 week intervals. They also said I will get ibrutinib and rituximab for 2 years as treatment afterwards. I live in Salzburg Austria so it is all in german. I fell very alone with this, so I am really grateful for contacts with people who have cancer also 🤗