After Treatment anxiety

I was DX with DLBCNHL in May, 2016. I presented as a large lump in my axilla. Biopsy diagnosed this as diffuse large B Cell. PET scan showed enlarged nodes throughout my abdomen. BM biopsy showed follicular but no DLB. 6 rounds of R-Chop and 17 radiation to what were originally "bulky tumors". My PET was clean. I was elated. However now everything is stressful. My first labs show low WBC, that scared me, I feel under my armpits for lymph nodes sometimes. My skin itches and I freak out. I wondering if these feeling subside at some time.

5 Replies

  • It is very early days yet and given how much chemo and RT you've had, it'll probably take quite a while for your WBC and blood counts generally to recover. If you are in full remission, then that is excellent but it is quite usual to feel unsure and worried about that future. I'm sure you are being seen and monitored at hospital regularly which should begin to put your mind at rest. It's sensible to have the habit of checking for lymph nodes. Your skin may be itchy because of the RT, that's common too, ask your CNS if can rcommend a cream.

    You might find a support group helpful, either a haematology one or a broader group to share fears and concerns and help you look forward and live well. Ours has been a lifeline for me over past 4 years:

  • I think it is normal to freak out a little about everything that could be related to our Lymphoma after completing treatment. Your WBC will start going back up and you should be able to call a nurses line at your chemo/radiation center to discuss skin itches etc.

    I switched laundry detergents and had rashes all over my body right after completing 6 R-CHOP treatments and I totally thought the Lymphoma was back until I realized it was the new detergent.

    My anxiety was so bad I bought "The Mindfulness and Acceptance Workbook for Anxiety". Make sure you eat healthy, exercise, meditate and pray.

  • Anxiety is normal, but you can't let it overwhelm you. Don't hesitate to call your doctor or the nurse if you have concerns. That's their job. Don't google your.symptoms. I am very fortunate. I had few side effects, but it took quite awhile for my blood counts to come up, so they did regular scans to play it safe. Even incurable lymphomas are considered very treatable as almost chronic conditions. I agree that meditation is helpful. So is excersise, eating well and coniuing to do things that are creative and fun. Lean on the group.

  • If you are taking maintenance rituximab your WBC will remain low. From what I've read it takes about 6 months from when you stop rituximab. Since NHL has a strong tendency to progress, please research your next treatment now.

  • For me the anxiety is mostly 2 weeks before 3 or 4 month oncology visit. I've been done with chemo since May 2013. I don't remember the itchy skin related to chemo but I'm diabetic so I've had itchy skin related to that and winter in mn. I was low iron and was also used to that from heavy menses so guess I was pretty fortunate. I'm in a support program through the ywca. Live strong. Really helpful.

    Take care,