I’m not an athlete by any means, but I could swim and I could walk. As long as I moved and tried to do those things, even though I felt crappy, I would always feel better afterwards.

Ductal & Lobular, Stage 3A, ER+

Double Mastectomy Side Effects
Limited mobility
Solution: Exercises to stretch, like “Itsy Bitsy little spider exercises” to run fingers and stretch mobility

Chemotherapy: AC-T Side Effects
(AC) “Hangover” feeling, heightened smells, nausea, loss of appetite
Solutions (Nausea) Emend medication
(Taxol) Brittle, dry nails, constipation, occasional diarrhea
Solution: (Constipation) MiraLAX and prunes

When I talked with other survivors that had been through chemo, they describe this “Emend” which is a stronger anti-nausea. I talked to my oncologist about it and he prescribed that for me  rounds two, three, four and that made a huge, huge difference for me. 

Squamous Cell, Stage 4B

Radiation Side Effects
Burning in pelvic region and neck areas (radiation targets), weight loss, fatigue
Solution: (Overall) Blood tranfusions, (burns) prescription burn medication

2nd-line Chemotherapy: Carboplatin and Paclitaxel
Fatigue, nausea, bone pain, hair loss (all got better as cycles went on)

(Blood transfusions are) like a chemo infusion except there are no side effects of it. You just sit there over the course of a couple of hours and they slowly provide you with red blood cells or white blood cells or just blood, whatever it is that you need.

Colon Cancer, Stage 1

Immnotherapy: Vedolizumab Side Effects
Fatigue

Mainly it’s just the fatigue. I’ve been through chemo, surgeries, recoveries, and so this could be a lot worse.

It does knock me around a bit with the fatigue, but apart from that it’s ten times better than what I experienced with chemo and surgeries.

Colon Cancer, Stage 3

Chemotherapies: FOLFOX & CAPOX Side Effects
Neuropathy in fingers, aversion to drinking cold liquids, chemo brain/fog, intense nausea
Solutions:(Overall) Walking, moving around

I could walk. I did a lot of walking through my chemo. There’s no bad weather, only bad clothing. I walked in the snow. It was my healing. It was my therapy. It was my everything.

Classical Hodgkin Lymphoma, Stage 2BX

Chemotherapy: ABVD Side Effects
Nausea, body aches, constipation (from anti-nausea meds)
Solutions: (Nausea) Zofran and Phernergan, keeping ahead of nausea, drinking a lot of fluids (body aches) baths, (constipation) MiraLAX

I just listened to my body. I didn’t move when I didn’t feel like it because it didn’t make any difference in my outcome. It was living second by second for me at the time.

Classical Hodgkin Lymphoma, Stage 3

Chemotherapy: ABVD Side Effects
Change in taste (metallic), fatigue
Solution: (Taste) drinking fruity drinks

Other than that, I was just really tired for a day or so after chemo. I didn’t really get nauseous or anything like that. My mom would drive about three hours to come stay with me after infusions.

Classical Hodgkin Lymphoma, Stage 3B

Chemotherapy: ABVD Side Effects
Fatigue, burst of energy → insomnia, constipation, acid reflux
Solutions: (Overall) Drinking a lot of fluids to flush out chemo, (constipation) flax seed, fruit, veggie shakes

Make sure all the waste is out of my body from the constipation – am I drinking enough water to make me feel strong and my veins available? 

Classical Hodgkin Lymphoma, Stage 4B

Chemotherapy: ABVD Chemo Side Effects
Fatigue, weird tastes (chemicals), bloating, weight gain
Solutions: (Overall) Running, drinking a lot of fluids, especially water

Drinking two liters of water every day was one of the toughest things I did, but every morning, I’d chug 16 ounces and that was the start of my day. I made it a rule,  I couldn’t do anything else unless I did that.

Acute Lymphoblastic Leukemia (ALL)

Chemotherapy Side Effects
Neuropathy, muscle cramps, heartburn, fatigue, nausea, mouth sores (mucositis)
Solution: (Nausea) Zofran, keep full stomach, avoid hunger, (mouth sores) magic mouthwash

I think it’s important to eat. When I wasn’t eating enough I would start to get nauseous so even if it doesn’t taste good it’s good to eat food and just have food in your body.

Acute Lymphoblastic Leukemia (ALL)

Chemotherapy Side Effects
Nausea, joint pain, constipation (from joint pain meds) and hemorrhoids
Solutions: (Nausea) Ginger chews, ginger drinks, (constipation) creams, donut seats for comfort, sitz baths, magnesium drinks

They had given me pain medicine. Occasionally, I’d get some joint pain or bad headaches. The pain medicine they were giving me caused constipation.

The worst part of being in the hospital was hemorrhoids. That was worse than pain I felt from any infusion during treatment. I had never had anything like that.

Acute Myeloid Leukemia (AML)

Chemotherapy Side Effects
Nausea, vomiting, diarrhea
Solutions: (Nausea) Zofran and compazine

(My first) round was probably the worst of the side effects. When I did the other rounds, it wasn’t the same chemo, so it wasn’t as intense, it was a bit more mellow. And those things were just the normal side effects, which is just the nausea and vomiting.

Acute Myeloid Leukemia

Induction Chemotherapy Side Effects
Poor appetite, change of taste, fatigue, constipation, diarrhea, body pain
Solutions: (Overall) Prescribed medications, (nausea) ginger ale, (upset stomach) ginger chews, (body pain) heating pads, (digestion and fatigue) being active

I think still being active, trying to get out of the room trying to walk around was helpful for digestion, for appetite for overall fatigue.

Anaplastic Large Cell Lymphoma (ALCL)

Chemotherapy: CHOEP Side Effects
Fatigue, hair loss, nausea, vomiting, low blood cell counts, constipation, diarrhea
Solution: (Nausea) Ativan, some Zofran

Follow the directions your doctor gives you. If they tell you your white blood cell count is going to be low, and they tell you to keep yourself safe from infection, do it. Wash your hands, keep yourself away from crowds and be careful.

Chronic Lymphocytic Leukemia (CLL) – Clinical Trial

Venetoclax and Ibrutinib Side Effects
(Ibrutinib) High levels of phosphorus, high blood pressure, (Venetoclax) blurry vision
Solutions: (High phosphorus levels) allopurinol, enagel and phoslo, avoid high-phosphorus foods like almonds, milk, and oatmeal, (high blood pressure) blood pressure medication (blurry vision) switched off Venetoclax

They seemed to have come to the conclusion that my healthy diet, which certainly might’ve been healthy in other circumstances, was packed with phosphorus and not healthy for that situation.

Chronic Lymphocytic Leukemia (CLL)

Chemotherapy: Fludarabine, Cyclophosphamide, Rituximab Side Effects
(Overall) Nausea, taste changes, (Rituximab) Allergic reaction: heart rate drop, itchy skin

I had some nausea, but that was pretty well maintained. I had to have really strong flavors though. Anything that was mild tasting tasted horrible.

Diffuse Large B-Cell Lymphoma (DLBCL), Stage 4

Chemotherapy: R-CHOP Side Effects
Nausea, appetite loss, fatigue, “chemo brain,” irritability, neuropathy in fingers, mouth sores
Solution: (Overall) Fluids, (nausea) Zofran and compazine, (appetite loss) ginger, (mouth sores) Biotene mouthwash

Chemo brain you hear about, I felt I was totally in a fog. I do remember losing my train of thought which I didn’t connect to chemo for awhile. I couldn’t spell anything for a while even after I was done. I would be typing on my computer and trying to spell out words and I couldn’t do it. I felt like I was in a fog the whole treatment.

Primary Mediastinal B-Cell Lymphoma (PMBCL), Relapsed

Chemotherapy: R-ICE Side Effects
Nausea, fatigue, constipation, appetite loss
Solutions: (Overall) Drinking a lot of fluids, (constipation) OTC meds like MiraLAX, (appetite loss) finding one or two palatable items, like fruit smoothies

In general, just stay hydrated. That’s sometimes not a problem because your body’s just begging for water. They tell you to try to drink more to flush everything out because you don’t want all that staying in there. 

Also, try to eat. I know that my appetite was not great. I think the worst was when I had the conditioning chemo right before CAR T. That was when I had literally zero appetite.

Primary Mediastinal B-Cell Lymphoma (PMBCL), Stage 4

Chemotherapy: R-CHOP Side Effects
Nausea, sensitive to smells, headaches, numbness (neuropathy), acid reflux, mouth sores
Solutions: (Nausea) ginger pills, ginger tea, snacking on foods in small portions, (headaches) cold or hot baths, essential oils, naps, (mouth sores) prescription medication, (mouth sores) chewing ice

For the headaches, I tried a million different things. I really didn’t want to take strong drugs because I was already on too many drugs. I didn’t want to take anymore unless it’s absolutely necessary.

I would do cold or hot baths, depending on how I was feeling. I would have a wet towel on my head. I even tried using essential oils to help with the headaches. Just being quiet, taking lots of naps.

Marginal Zone Lymphoma (MZL)

Chemotherapy: R-EPOCH Side Effects
Itchiness, bone pain (from Neupogen shots), nausea, fatigue

Neupogen gives you that bone pain that’s so incredibly painful it’s hard to describe. It’s a deep aching that comes from inside your bones all over and even your scalp hurts.

During the bad days, I would literally just lay down in my room all day. It was not enjoyable.

Epithelial, Stage 2

Chemotherapy: Paclitaxel and Carboplatin
Runny nose, nail and teeth changes, loss and change in taste, mouth sores, sore throat, constipation, and anal fissures, foot pain, nerve issues

Solutions: (Taste change) use plastic spoon to avoid metal taste, (mouth sores) coconut oil on lips to help with external dryness, drink Carafate, gargle with warm water and baking soda, (constipation) miraLAX, (anal fissues) numbing ointment applied before bowel movement, (nerve pain in leg) compression socks

If you’re having problems like that, please tell your nurse. They’re there to work with you. They’re your team. They’re going to try to help even embarrassing parts of you. And no one is going to laugh or snicker or anything because they have seen it all and it’s all natural parts of your body that are just injured from this life-giving poison that you’re having to take.

Low-Grade Serous, Stage 3

Chemotherapy: Carboplatin and Avastin Side Effects
Bloating, fatigue, pain in joints, legs, neuropathy, itching, appetite loss, nausea (especially 3rd cycle), diarrhea, constipation, indigestion
Solutions: (Diarrhea) Chicken noodle soup, avoid fried foods, (constipation) miraLAX and Senna, (indigestion) Tums, Imodium AD, Pepto-Bismol

After my third chemo is when I started to lose my appetite. That was really bad. I was weak, I was losing my appetite, and I was still dealing with the itching and the pain. But by that time I knew the pain was going to be here for a couple of days, the world is not going to end, you’ll be okay.

Gleason Score 8/9

Radiation side effects (long-term)
Blood in the urine and incontinence. Started to feel small mass start to bleed inside the bladder.
Solutions: (Mass) Medical staff performed local procedure, cauterizing it so it didn’t bleed anymore. Doctor said likely caused by damage from radiation.

In terms of incontinence, the key message is do your Kegel exercises religiously, both before and after treatment. I’ve found that I have minimal incontinence issues when I regularly do the exercises but when I slack off, it becomes more impactful