Lymphoma/Chemo stories and info?
August 22, 2008 11:13 AM   Subscribe

My girlfriend has been diagnosed with Non-Hodgkin Lymphoma. I'm looking for any mefites that have been through this. She starts chemo this week.

The kind of chemo is CHOP for 6 treatments every two weeks. We live in Los Angeles. She's been really awesome and level headed about the whole thing. We would love stories, advice, info, support resources regarding Non-Hodgkin Lymphoma. I would love to know more what to expect on my end with the chemo so I can be a supportive/proactive boyfriend.

posted by ambulance blues to Health & Fitness (12 answers total) 4 users marked this as a favorite
Endless amounts of Chapstick and lots of patience. She's probably going to be exhausted. Also, many people tend to feel terribly guilty taking up the time of the caregiver. My husband and I have both had major health crises during our marriage and it helped immensely that I knew that I had been there through his crisis. Something you may want to mention, therefore, is that when you go through your inevitable health crisis in life, she will be there for you and so you are just doing advance payback.

Oh, also, smells can be incredibly nauseating. Try not to open a hot plate of food in front of her. Rather than being tempting (which is usually the intent) it tends to cause the opposite effect.

Good luck and feel free to email me if you need any other suggestions.
posted by Sophie1 at 11:39 AM on August 22, 2008

I've had Hodgkin's. 6 months, fortnightly chemo. Then, a month of daily radiation.

Everyone is different, so grain of salt, dude.

I hated feeling sick and was slightly ashamed of being so weak. Having supporting close friends nearby was great, but I didn't want to see people who I wouldn't normally see.

Do not let her drink or eat a lot of something she normally loves, when she's sick. I still associate G*torade with the nausea, and I can't be near it. If I was anything more than ambivalent about that drink before, I'd be very annoyed.

Try to keep her moving a little when the nausea isn't too low. It's easy to fall far out of shape really quickly by staying still for days at a time. Don't exercise, but keep muscles active. Not for long, though -- one gets tired *very* easily.

Temperature matters. Cooler than usual is probably better, unless she loses hair. Use a cap.

Oh, and of hair loss, eyelashes are the most underestimated parts of one's face. Keep away from dusty or such areas when hair is falling out.

Good luck.
posted by cmiller at 12:11 PM on August 22, 2008

I don't mean to question the doctor's diagnosis but make sure your girlfriend gets a SECOND diagnosis. I was *almost* diagnosed with Non-Hodgkins but luckily I had a very smart doctor in NYC who ordered a second biopsy of the lymph nodes, and when that also turned up "inconclusive" they ended up diagnosing me with a much milder disorder called Castlenman's Disease. Instead of having to go through awful chemo I ended up being put in a high dosage of prednisone and iron pills. I've been symptom-free for 6 years now.
posted by camworld at 12:30 PM on August 22, 2008

My mom had non-Hodgkin's lymphoma and went through six chemo treatments, at three-week intervals. When she was diagnosed, I sent her this answer in a thread on colon cancer, which she found very useful.

She's been cancer free for more than a year. Her hair has grown back, and she's back to her normal physical activities. Best of luck to you and your girlfriend in getting through this.
posted by smich at 12:32 PM on August 22, 2008

My girlfriend had Hodgkin's. (She's just now relapsing it looks like, unfortunately.)

Everyone reacts differently to chemotherapy and radiation. For my ex-SO, I think the hardest things for her were dealing with the lack of energy. Nutrition will play a big part in all of this, so i'd get started on that now, eating as healthy as possible. She felt weak a lot, particularly a couple of days after chemo. It's important to give the other person something useful external to the cancer to focus on, even though they may not have the energy to see visitors or take up hobbies - getting the person's mind off the cancer every once in a while is very important. I have good reports from some patients who stayed active the entire time although it was very hard - they had positive things to say about trying to walk every other day or so, etc. This can be somewhat a challenge during disorders of the lymphatic system, since many things e.g. clotting etc get affected and the immune system can be compromised.

There were lots of obscure pains and yes, the nausea. Keep the anti-emetics handy, and make sure they're prescribed something for the pain. My ex-SO's oncologist was extremely liberal with medication, with a few different options for nausea (e.g. quick acting vs prophylactic), a few different options for pain, some proton pump inhibitors for all the acid, etc.

It would be good to keep a close eye on the symptom progression. A daily log of how things are going is important since it helps you have a baseline of "this too will pass". We reviewed this often. The patient always feels crummy, but inevitably there will be bright spots. Looking back on them helps. And the doctor will appreciate the attention to detail.

I have to be brutally honest with you. The transition from relationship to caregiver is extremely difficult and the transition back is three times as hard. Try to do all you can to not slip totally into one role or the other. Your support will mean everything in this. But don't go it 100% alone, either: Reach out to her friends and try to take some time for yourself during all of this.
posted by arimathea at 1:18 PM on August 22, 2008

My dad had this, and his chemo course sounded about the same.

Some things that we kept in mind:

-Always put the toilet seat down when flushing. The flush kicks up lots of contaminants that land everywhere in the bathroom.
-A cat is a good thing to have around as they'll keep her company but she can't go near the litterbox. If you have a cat, that is.
-He found that he was really into spicy food because he could really taste it. We took him over to a jerk spot near his house and I'm pretty sure he'd still be eating if we hadn't stopped him. Also, preparing his own food helped him get his appetite going, and he's still sharing recipes with me from that period.
-He felt good right after the chemo, and then a long lull of nausea, and then increasingly better until it was time for his next session.
posted by jon_kill at 1:21 PM on August 22, 2008

NHL is a family of diseases encompassing acute and chronic forms, curable and incurable and aggressive and indolent. so it is essential to know the cell type if you're looking for any resources. With that information, you will be able to make some sense of the quite daunting wealth of information on line.
posted by Neiltupper at 3:38 PM on August 22, 2008

For support/levity/inspiration, she might want to check out my friend Morgan's brilliant videos. He's doing fine now, by the way.
posted by FlyByDay at 8:10 PM on August 22, 2008

The Lymphoma Society can be a good resource. They also reimburse just a little bit for a few things, like parking fees and whatnot.

Cytoxan is usually given with a drug called mesna that helps prevent bleeding in the bladder (an issue with cytoxan). She should have an echo or cardiac scan done before getting Adriamycin because it can impact the heart after multiple doses. (Ask the doc if she's not getting those things). Adria can also make her urine pink or red while she's getting it - which is normal. Try to take the prednisone in the morning because it can affect sleep. Stay ahead of the nausea if possible - it's harder to get people to stop throwing up after they start.

Don't get weirded out reading too much online (there's a lot of scary BS online) - ask your docs and nurses because they're the ones working with your girlfriend. The weeks between the chemo sessions are usually the greatest risks for infection so stay away from little kids, large crowds, wash hands frequently. Nurture that positive attitude she has now. That can make a world of difference. Best wishes to a healthy recovery for your girlfriend.

onc RN but not your onc RN
posted by dog food sugar at 10:08 PM on August 22, 2008 [1 favorite]

Response by poster: thanks for all the responses so far. a lot of great advice.
posted by ambulance blues at 1:30 AM on August 23, 2008

Response by poster: If anyone is interested, my girlfriend has begun to journal her recovery here:
posted by ambulance blues at 11:28 AM on August 24, 2008

What is it like to have non-Hodgkin’s lymphoma? I can only speak of what it’s like to be the person who goes through it by proxy as my hubby was the one who’s body was consumed by it. It’s taken a bit of time and editing for me to respond. I’d like to believe it never happened and I can wake up from this very bad dream. Maybe re-telling our experience will be helpful.

Your case will be truly different from anyone else’s. So much depends on the exact type of cell, the staging, your body’s response to the drugs – and most importantly to me, how your soul responds to this deadly encounter. You begin from wherever you are in life. If your relationship is an open and giving one, you’re very much ahead in the support category, but realize that the way your relationship works now will not necessarily be the way it works in the future. There is no RIGHT way to respond to such a diagnosis. I can only speak of what we experienced.

The beginning: I was the one who first heard the news. After exploratory surgery and biopsy, the surgeon came in and told me that it looked like lymphoma. We’d get the results in a few days. I was alone. He left and I stayed in the little conference room trying to collect my thoughts. I couldn’t. And, what’s more, I was the one who had to tell my hubby the news. It’s a complete loss for words when the doctor calmly tells you that your loved one has lymphoma. Ours was a very long and murky path from that point. There’s so much conflicting information that you ultimately must put faith/trust in your oncologist; however, I very strongly recommend a second opinion. Even after you’ve begun one treatment course, it’s not too late to seek out a second opinion.

For us, the approach was lead by my hubby. I decided that it was his right to guide the response because it was his body and his psychology that would determine the way that was best for him to deal with it. I fully supported his decision to not even consider the “what if it doesn’t work”. It was the only way for us to face the battle – no holds barred and no option of defeat. He worked full time (running his own business) and taking time off wasn’t in his nature. Keeping life “normal” was our way of going forward. So, we both continued to work full time and follow our normal routine as much as possible.

One major adjustment is to the loss of privacy. Everyone pokes and probes and looks around. Needles become a common site. I went to every appointment with my hubby to be moral support. If that works for your relationship, I’d recommend it. You will be better informed and you may be able to ask questions for both of you. Remember – it’s not only your loved one who has the diagnosis; it’s yours too if you’re in it together.

The bills can be enormous. Let that be your task. Keep up with the financials and if you’re lucky enough to have insurance, figuring out those bills is a handful. If someone offers to help, let them do things like stop by the store, send funny stories, rent a movie, lend a book, clean the house while you’re out, fix a meal.

We started off with 6 treatments of CHOP-R. (An oncologist has since told me that prednisone is the main enemy of lymphoma, but that’s one doc’s opinion.) My hubby hated the prednisone. It made him irritable as all get out, jumpy and as hungry as could be. He even gained weight during those first 6 treatments. Hair loss occurred after the second treatment. Funny enough, he had an attractively shaped bald head!

You need hats – they help keep you warm – but make sure they have a soft lining – nothing scratchy. We made a game out of the hats for treatment day. Each hat was seasonal or themed. For thanksgiving, we made one out of a turkey windsock. He had to duck to go through doorways, but it was quite funny. One of the nurses later told him that it made her day, but she had to hand off duties to another nurse because she couldn’t stop laughing… he really enjoyed doing stuff like that.

So, what’s infusion day like? Well, you go into a room with a lot of recliners. Often times there are TV’s for each station. It takes several hours. Sleeping is normal, since they often give a strong dose of Sudafed, which makes your drowsy. It’s a surreal experience. You walk in, they draw blood to make sure your cell counts are OK, then go get hooked up to the IV. Then, toxic chemicals are infused into your vein. You finish, go pay up and walk out the door as if nothing has happened.

How does chemo affect you? Well, in my simplistic understanding, it kills all rapidly dividing/growing cells. Which hopefully means the lymphoma cells. It also means your taste is altered, the lining of your gut, your hair, your short-term memory, etc. So, stock up on plastic utensils as metal ones make food taste yucky. Things you liked to eat yesterday will suddenly taste awful today. Don’t take offense if you try your best to find things your loved one wants to eat, but cannot. It’s not personal – it’s the chemo. The hair loss and change in appearance may be a huge thing for her. Remind her that it’s a temporary means to an end, and yeah, agree that it sucks. My hubby went ahead and had his hair cut really short to avoid the shock of a lot of hair in the drain. I think that was a good move – it was a proactive decision.

The nausea can be controlled with drugs. Use them. Even if you don’t think you’ll need them. Once you need them, it’s often too late to keep them down. Take them in advance. We learned that the hard way. My hubby ended up in the hospital with uncontrolled vomiting and dehydration. But, they have wonderful injectable drugs for that which stopped it right away.

Don’t be hesitant to call the after hours line for the oncologist. It may feel like your question is trivial, but you don’t know sometimes. Some thing that may seem small may indeed be a big deal. I experienced this. Plus, remember that you’ve not been through this, so any question is a valid one.

The immune system will be compromised. Keep things as clean as reasonably possible, but don’t keep pets away if you have pets. I don’t usually advocate bleach, but use it now. Dilute with water and keep in a spray bottle for kitchen and bath countertops, phones and doorknobs. To be really cautious, limit raw foods to those that can be washed before peeling and also consumed in one meal: bananas are good; conversely, it may be best to avoid things like raw spinach.

The process of getting through chemo is daily. Each day can bring a new surprise as the body’s ability to cope changes. And, the further into treatments – say, by number 4, you’re so tired out that when you start to feel human again it’s time for another treatment. What’s happening is that the blood cells are just beginning to replenish back to only a “quart low” by time for the next chemo. And, they don’t give you another treatment until you’re recouped enough to withstand it, barely. (Nothing like filling your body with toxic chemicals and euphemistically calling it treatment is there???) Sometimes blood transfusions are recommended. If you’re not one to donate blood, now would be a good time to start - if not for your loved one, then to help out someone else’s who may need blood.

Investigate with a nutritionist/doctor/nurse/pharmacist who’s knowledgeable in chemo the option of adding supplements, vitamins and minerals to the diet. Get to know the RN’s and Nurse Practitioner. They will be a wonderful source of information.

After the course of treatments, there will be a scan to determine if the lymphoma cells are inactive and/or if the size of the site(s) has minimized. At this point, the doc will tell you that ‘x’ is the next course of action. Here is when a second opinion is absolutely necessary. You’ve trusted your doc through now, but it’s not a question of trust. You must get a second opinion. We did not. You will benefit from our mistake.

The emotional process is personal. I can give no advice, as your situation is different than ours. It sucks and there’s no sugar coating it.

The greatest sense is of being out of control, of being exhausted, of being a very small fragile human being. The autopilot that we use to blindly get by in our often-humdrum daily existence is knocked off line and we’re left punching buttons on the instrument panel of a plane that’s in a nosedive. It’s frightening. You know the worst thing about clichés? It’s that they have a bit of truth to them. You’ll cross each bridge when you get to it.

I'm sending all of my best thoughts to you and your girlfriend. You will find out that there are a lot of great, wonderful people out there who will help you get through this.
posted by mightshould at 5:34 AM on August 26, 2008 [4 favorites]

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