When do side effects happen

I am finishing round one on Wednesday and know that the side effects are gradual as the chemo accumulates in the body. I am curious about when things start to take the turn. So far things are manageable but I know everything is uphill from here. Any insights or tips for the long road ahead?

Hey kmelick,

I go in for my third treatment of ABVD on Thursday. From what I hear, everybody's response to treatment is entirely different. So far I have had no fatigue, loss of appetite or nausea. They told me that I would lose my hair during week three, and I am just finishing my fourth week with a full head of hair. My doctor told me that the side effects that I experience after the first treatment are a pretty good indicator of what I can expect for the rest of the treatment. I wouldn't plan on the worst happening. Deal with it as it comes. Phillip

Thanks Phillip,
My first treatment went really well, no nausea, probably an increase in appetite and a bit of fatigue- based on what your doctor said I might not have too hard a time. Keep me posted on how you are doing- I am a mere step behind you :)

Take Care,
Kristi

Everyone is different. What chemo cocktail are you getting and what stage? Nausea meds have come a long way. It is cumulative as it builds up in your body. I hope that is all the side effects that you experience during treatment. Take care of yourself.

Kris

I am getting ABVD and am stage 2, bulky with symptoms- So far so good- just fatigue and constipation which is manageable with laxativ

My son (19) had Nodular Schlerosing classic HL Stage IIIB. He was given ABVD-COPP with 2 weeks on and 2 weeks off for 6 months. His drs. said it is not unusual for it to be different each month. Make sure you get enough fluids. Getting dehydrated seems be very common - and who wants to spend the day in clinic getting fluids when you spend enough time there anyway! I know how scary this is but I wanted to tell you that his port came our after radiaiton. If all goes well with tests on Monday and Tuesday, he will be returning to school in the fall. They said he had a coomplete response to chemo. Fatigue is really the only thing I notice.

I hope that you are surrounded by family and friends to support you through this.

Thank you so much! It sounds like this is really possible to do. My biggest complaint is also fatigue, but with support I am getting through it.

Thanks,

Kristi

Hey Kristi

I just had my third round of chemo yesterday. I am getting ABVD every other week. This week is no different. I feel fine. Aside from catching an occasional nap all seems to be good. I do turn in a little earlier than I used to but I feel great when I wake up. I am still working a full work week except the day I get chemo - I take it off. I could work, but I figure if ever there is a day to take it easy, that is the day. Phillip

This is really encouraging. I am tired and hungry but besides that able to function- I am two rounds behind you. Best of luck in the finals-

-Kristi

Hi Phillip,
That is great news! I just finished round one and am mostly just tired and hungry. I have been wondering and hoping that these side effects might be the most pronounced and it won't be too terrible. I am glad to hear that you are working. I am a teacher and am off for the summer but will start teaching right at the end of round 4 so am hopeful after reading your post.
Thanks so much!

-Kristi

Hey Kristi,

I can totally appreciate your feeling tired and hungry. Sleep when you can, but try to keep the long solid sleep for night. At least for me, sleeping too much during the day makes for a restless night. The one thing that I have found that helps is to eat less, but eat more often. I suffered some acid reflux at the begining and everytime I ate something, I felt pretty gross and bloated regardless of how much I ate. I am currently taking Prilosec and it seems to be doing the job. Usually the morning meal consists of Dannon strawberry Greek yogurt and a Zone bar. The yogurt has twice the protein as regular yogurt and does a great job in helping ease the stomach issue. Sometimes lunch and dinner are pretty light, but I always try to eat something and am not shy about hitting a Ben and Jerry's pint pretty hard. I'm still relatively new to this process as well, but so far the effects have not been cumulative. Keep me posted. Phillip

When your counts are down you aren’t supposed to eat yougurt. Is Greek yogurt different? Does it have active cultures? My son got mucasitis really bad after the 2 weeks of chemo. The lining of your digestive tract is basically eaten away and is very painful from mouth to behind (trying to be polite). Very painful. He was getting 4 more drugs on top of ABVD so maybe it was side effect of one of those. They gave him oxycodone for the pain and it didn’t begin to touch it. He had Prilosec too.

Kristi and Phillip

Hi. My name is LJ and i have HL2B. Anyway, i also wanted to go back to work. But my WBC count was kinda low and my doctor advised me to "stay away from crowds". I am a physical therapist and worked on a Nursing Home. Do you guys know if work is still possible while getting "booster shots"?
Thank you.

I wouldn’t do it. It isn’t worth it. During my son’s first month of treatment (HL IIIB getting ABVD COPP for 2 weeks on and 2 off) he went to a Titans football game. The next night he ended up in the ER during HiN1 scare. Very scary. Spent 6 days in the hospital. He was 19 and basically spent the time at home. They told him to stay away from people. We wore masks when he was really bad so that he didn’t have too. One other time he went to a movie (dr. said that is a really bad idea and equated it to a big petri dish) and ended up in the clinic all day getting antibiotics and fluids. It was bad enough that he didn’t try it again.

Hi LJ,
So far my doctor hasn't said I can't work and I am a teacher. I think they will watch my WBC counts and may tell me I can't work when it is too low. If the booster shots keep your WBC up I would think you could keep working- Also, it is good to know that with cancer you fall under ADA which means your employer must accommodate you on your job- so look into it because there may be something you can do to keep you working, but also keep you safe-

Oh thank you for the ADA advice. I honestly didn’t know about it till now. I’ll definitely look into that. Thanks again.
Hope everything goes well with you all the way.

Good luck and keep us posted on your job!

Hi LJ,

I have to agree with Kristi. Everything depends on the white cell count. I am actually stage 3A and have had no issues what so ever. I went to a friends house last weekend and she has two kids and the place was a kid germ zone. I made sure the Purell was nearby and had no issues afterwards. If you are working, there are a couple of things you definitely want to look into. The first is the Family Medical Leave Act-FMLA. It will guarantee your job if you you have to leave because of your illness. The second thing to look into is to see if your company offers short term disability benefits. I work a professional job and my company provided me with the FMLA paperwork that my doctor filled out. It basically tells your employer that you are sick and when you can and when you cannot work - generally leaving a lot of gray area when it comes to the cannot work part. My doctor prohibts me from working the day of my chemo and is discretionary pretty much any other time. Being kind of work nut, the not working on the day of chemo has been a pain in the butt because I usually feel fine. The short term disability benefit ensures that you are paid at 100% while you work through your illness. If you are out 100%, I am not sure how it applies, but I do know that I continue to receive my pay even though I am taking every other Thursday off for chemo. Fortunately I have not had to take any other days off. They will burn through at least your first 5 days of vacation pay and then turn to the benefit. Keep us posted. Phillip

Wow Kristi and Phillip, race to the finish line. Sorry Phil but in reckon Kristi might win.

Good luck you two, hope your problems are slowly being ironed out by time.

Annie

Kristi,
I just had my 4th ABVD last Thursday. I've refrained from posting on this thread because of frustration, but I could not hold-out any longer... I'm afraid that someone might get the wrong idea about ABVD treatments the way that you and Phillip talk about it.
I have not had such an easy time... I was very healthy going into all this too. The 4th treatment kicked my butt. It must be true that the chemicals build up in your system because I've never experienced fatigue like this ever before. I receive my ABVD every other Thursday and with the past 3 treatments, by Monday, I'm usually in decent shape... not 100%, but okay. This time, I slept almost all day on Monday. Today is Tuesday and I'm still fatigued. I am also experiencing peripheral neuropathy in my hands. All of my fingertips are tingly numb and with each treatment, the numbness goes further down into my hands, especially in my thumbs.
I wanted to "chime in" to this thread because there are other people that might just be getting diagnosed that may be thinking this is a piece of cake.
Please don't take this wrong because I am VERY HAPPY for both you and Phillip that your side effects are minimal.
Regards,
-Paul