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BEACOPP - How bad is it??

Happieapple's picture
Happieapple
Posts: 11
Joined: Apr 2011

Okay sooo I just found this site and joined it...soo Let me briefly list what's going on.

Last year in late October I was diagnosed with Hodgkin's lymphoma (I think it's stage 4...I had it in my lymph nodes and lungs...none below my diaphragm...Idk, no one told me.) I left school, came home and started treatment in late November. The treatment was ABVD and I was supposed to get 6 cycles (12 treatments). The PET scans were looking good after my third cycle...but then after my 4th, there were a few spots that seemed to stay the same and one spot in the middle of my chest that was much "Hotter" as my doctor said.

So we saw this guy who is supposed to be an expert on Lymphoma (which he totes is) and he and my Oncologist decided that I should switch to escalated BEACOPP and depending upon how that goes for the first two cycles they will decide what to do after that.

Now, I looked it up and they told me about it and the side effects and blah blah blah. I know I'll lose my hair and be sick and tired yeah...got it.

But, the one side effect that is really really bothering me...well, I guess it's a side effect, is the fact that they told me I needed to stay out of the sun. Like, really??
Litterally, I live at the beach. I am so torn up about this. Has anyone out there ever had BEACOPP? Can I still go to the beach if it is cloudy and I put on lots of sunscreen? I mean, I asked my oncologist, and he said I would fry if I went to the beach in the middle of the day and that maybe if I sat under an umbrella...but thats no fun!!

Also, I am 18 and a freshman in college. I had to withdraw for the year back in October and the college is holding my spot so I can start again as a Freshman in the Fall...BUTTTT of course, nothing ever goes okay for me, and my doctor said depending upon how I react to the treatment, I might not be able to finish in time...

If you had BEACOPP, how long (like months I guess) did it take you to completely eradicate the cancer?

Sorry if I sound like I am complaining, it's just, I can't believe I gave up my life for the past six months expecting the disease to go away and be able to enjoy my summer, BUT NO! I get to suffer even more. Like un-freaking believable.

One last question, how long does it take for your hair to fall out? When I started ABVD they told me my hair would probably fall out, but it was so thick that it only thinned and I still have plenty left on my head...when will I start to look really bad??

God this whole things sucks big timeeee.

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Glad you found us, sorry that you had to look for us. I'm not familiar with that chemo regime. I was on R-CHOP. My thin, straight hair began to fall out 14 days after my first treatment. You are young and you sound spunky! I think you'll be able to come up with some hottie looking no-hair dos! It's all in the attitude, well and the new earrings you'll buy to dress up your ears! If you research these posts, you'll find a bunch of posts regarding hair loss and how many of us handled the situation. My hair hurt, at my scalp before it started falling out. When it started falling out in my hands, I shaved with clippers. My scalp stopped hurting. A few months into chemo, I had the same hair-falling out pain in my eyebrows. I did not want to loose my eye brows or lashes! I started using a product called Rapid Lash, I believed this helped, my lashes actually got longer! The rapid lash idea came from the American Cancer Society's, Look Good, Feel Better instructor. Try to get ahold of the group in your area! They offer a 3 hour class with tips on makeup, wig styles and skin care during cancer treatment. The class and the materials and handouts are absolutely FREE! If you are like I was, I had no one to ask cancer beauty questions to. I learned a lot of cool tips. The instructors that I had brought a big bunch of wigs with them. Not all of them were "old lady" wigs. There was a nice selection, these ladies had long styles for those who had or wanted long hair. Oh, part of the class is the offer of a free wig as well as over $100.00 in make up that's appropriate for your skin tone. Most of the ladies brought a friend with them. Most everyone appeared to enjoy themselves, I did! My hair is about 1 1/2 inches long now. I wish the cut, color and highlights price was reflective of the length of the haircut, nope same old price. I was able to use that salon money for other things when I was bald. I was bald all of last summer. It was nice and cool. Being bald saved so much time when I was getting ready to go somewhere. Too cold in the fall. Burry cold!

That whole start and then stopping college in your Freshman year sounds like no fun at all. That would be difficult for me to handle...I'm too anal.
I'm sure that college will be glad to work with you. Check out the Livestrong site, they may be able to offer you ideas on how to best mesh college and your cancer treatments.

Where'd "HappieApple" come from? It's very sweet. You could add on a third part: Pie. HappieApplePie! Hang in there HappieApple. We'll all be here for you if you have any questions if you see an opportunity to offer us some information, please share. We all love hearing new cancer related ideas and non cancer ideas too. Sometimes we go on about food, those are some of my favorite ones!

Talk to you soon. Try to stay out of the sun until you get a straight answer on why you need to stay out of the sun. The sun and the surf are the key calmers of my soul! I would have to make many compromises if the dr didn't want me in any sun. Plus I need the vit D from the sun too? Ta, ta for now! It will all work out for you, we all will be here to help carry you along when you need us to. Kellie

retentive to be able to go with the flow when classes are concerned. What are you going to school for?.

Happieapple's picture
Happieapple
Posts: 11
Joined: Apr 2011

Heyyy thanks for replying!
Yeahhh I was sort of in one of those "I hate the world" moods when I posted this...not such a good idea.

I've had thick, long (seriously, a little past my mid-back), curly hair my entire life. I always hated how thick and curly it was and now I'm realizing just how beautiful it was (<-- not meant to sound braggy). But I think I've come to terms with losing it. I can so own being bald...or wearing wigs or hats or scarves : )

Thanks for letting me know about the Rapid Lash...I will definitely look into that should I lose my lashes. I can handle the top of my head, but when you start messing with my face, thats a whole different level of frustration. I LOVE doing my makeup AND buying earrings too, so thats good!

Haha Happieapple is just a name I use on for when I have to join websites and stuff. My best friend and I were thinking of nicknames that had to do with fruit (I don't recall the reason) when we were like 10 and it stuck.

Well, I mean, I know why I need to stay out of the sun. My medicines will make my skin extra sensitive to light and my doctor told me that I could get easily burned and I'm sitting there like "Umm yeah,it's happened before and I really don't care if I do...I NEED the sun and beach." And he goes "Yes, but do you need 2nd degree burns?" Soo I understand, it just sucks...like really really really sucks. Around here, if you are bored, you go to the beach. If you are tired, you don't go to bed and take a nap, you go to the beach and take a nap. But my friends have all told me they will totally hang out with me inside, which I know is a complete lie...they will get tired of it, but I know at least one of them who would : )

Regarding school; last year I started and my major was Economics, but I've been reading through the 4 (yes 4!) textbooks I had for the class and it really doesnt tickle my fancy. I'm thinking about switching to Marketing and minoring in theatre because I think Marketing would suit me very well and I did theatre in high school and I miss it like crazy...we'll see though. It's all fairly irrelevent because I want to go to Law School after college and study either corporate or Divorce Law. My plans WERE to be a partner by the time I'm 30...but I guess I'll have to push that back to 31 or 32 now...

Sorry I wrote so much! I don't really like to throw all of my "troubles" or "issues" onto people, but when they ask I spill. I hate letting people see me frustrated or distraught so I don't talk about things a lot, so this sort of feels really good!

Much Love,
Emily

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Emily,
I'm always blown away when someone so young joins the group...just breaks my heart. I did a little research on BEACOPP before responding to your post and found out it consists of 7 different drugs. I'm thinkin you will probably loose your hair with this combination of drugs. How soon..I don't know. I did CVP-R and had severe thinning, but not complete hair loss. Your chemo has 3 of the same drugs as mine.. CVP..(the o in yours is the vincristine). You also have Prednisone in yours, which really gave me a run for my money...detested that stuff! One thing you do have going for you is your age..I'm 60 and don't bounce back so easily as when I was younger. I'm sorry you have to deal with all of this at such a tender age, but we will be here for you anytime you need us. I was diagnosed in June 2010 with Follicular Non-Hodgkins Lymphoma-stage3-typeA-grade2-indolent slow growth. I'm finished with chemo and now doing 2 years of maint Rituxan..one infusion every other month. Keep us posted and yes...cancer really does suck, no matter what age we are. Take care...Love...Sue (FNHL-2-3A-6/10)

Happieapple's picture
Happieapple
Posts: 11
Joined: Apr 2011

Hi Sue!
Soo I have a question, what is so bad about Prednisone? I don't know much about it...all I've heard is that it can make you gain weight, which by the way, I am soooo freaked out about. Here I am sitting thinking that the one possible bright side to this situation is that I might lose weight and then when I go back to school my bod will be bangin', but then I hear that I might actually gain weight? Did that happen to you? I also heard that the weight might be gained in my face...Is it permanent?
I know it's stupid of me to worry about appearance and all considering what's going on, but still, I want to look my best!

Thanks : )

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi Emily,
The prednisone made me very hyper, nervous and caused me to stay awake. I took 60mg a day for 5 days the first week of chemo treatments. It did cause a little weight gain..for me, about 5 pounds total. It did make my face look full..(moon face) and face flushing, like a slight sunburn, but that is only temporary and goes away between chemo doses. The deal with Prednisone is remembering how much "GOOD" it does...without it our organs would swell during and after chemo, which would be very painful. It also helps with aches and pains from the chemo. I hated taking it, but it was totally do-able. You will do fine and if you don't mind being hyper then it probably won't bother you like it did me. Your not silly to care about what you look like..we all care, even the men.
Keep us posted...Love...Sue

USCTrojan07's picture
USCTrojan07
Posts: 2
Joined: Apr 2011

Oh and about prednisone, omg it made me soooo hyper, like bouncing off the walls, wanna run around in circles hyper every week I was on it, then the off weeks, I would be exhausted! Also, it made my mind really clear, like I wish I was still at my Communications/Marketing job when I was on prednisone because I could come up with best slogans ever just randomly!

It also made me super emo, like bipolar emotional, one second crying the next so happy and excited. It's a very strange feeling, but it's temporary and you might not have those reactions at all. Even watching reality tv made me cry sometimes! Random silly things.

Umm I guess the weeks I was on it (every other week) I did have a bigger appetite and wanted to eat a lot more, but then the offweeks I barely ate anything so it balanced out and I didn't gain weight. Actually I was super underweight when I started treatment so it was good for me to gain 5 or 10 pounds. It's definitely NOT permanent, don't worry! Just make sure to get to the gym pretty quickly after treatment's over, don't wait 6 months like me. I gained more weight post-treatment.

If you have any other questions let me know!!

I'm also on facebook...www.facebook.com/contessa.s

Christopher_'s picture
Christopher_
Posts: 5
Joined: Apr 2011

I finnally found someone else having escalated-BEACOPP for stage 4 hodgkins. Allthough mines more like BEACPP because the Oncovin was omitted from my regime due to past medical problems I had when I was younger which the hematologist thought might make me more succeptable to Oncovins side effects.

Regarding how bad the treatment is, I havent found it hard at all. Mind you I haven't had any other Chemo regimes so I can't compare. I haven't felt sick or nautious once during my entire treatment, quite the oposite I can't stop eating because of the Prednisone. I think I've gained just under 10Kgs and I've only just finished my second cycle - Keep in mind that I was immaciated and underweight looking prior to being diagnosed.

The only noticeable side effect I've had to the Chemo is loss of hair which hasn't been to extreme, although its hard to judge cause I just shaved my head the day after I noticed it fallling. I have my blood counts drop and all, but I think thats just a universal side effect. My counts are usually well controlled because I have a blood transfusion on day-4 of treatment and on day-9 I have a Neulasta shot. I don't think I auctually need those so much but my doctors give me a choice and I choose to go with whats going to make me feel the best. A reason why I love my doctors, there really big on the whole quality of life thing.

I know how it sucks to have these sorts of things happen to you in life, I called by the hospital the night after my first day of my nursing course which was pretty depressing. I've now dropped out and I'm going to hopefully restart next semester or whenever I can depending on how treatment goes. For the meantime I'm starting to volunteer in a Charity shop, spending time with friends, eating and exercising loads.

Stay Strong.

Chris,

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Just wanted to say to hang in there, you both have great attitudes. Nice that you found each other and can relate on so many levels: similiar treatments, age, college, etc.
Someday soon you will find your new normal after treatments. I am 21 yrs out from radiation and 17 yrs from ABVD for recurring Hodgkins and 3 yrs from Breast Cancer. I have 2 girls 15 and 18!
Take care of yourselves!
All the best,
Cathy

USCTrojan07's picture
USCTrojan07
Posts: 2
Joined: Apr 2011

Hey fellow BEACOPPers...I actually had BEACOPP14, meaning I was given the chemo in 14 day cycles, 8 total.

I started with ABVD the first cycle, then switched to BEACOPP based on my research and 2nd opinion and I'm really happy I did! I was Stage 4B and my PET scan was clear after 2 months and I've been clear since December 2010. (thank God!)

The main issues are low blood cell counts---so Neupogen shots and blood transfusions were necessary for the treatment, but it wasn't so bad. I only had to be hospitalized once for neutropenic fever, which sucked, but thankfully it was only for a few days. Umm I kept losing hair little by little throughout, and lost all the last cycle. I still went out in the sun occasionally, just with a looot of sunscreen and huge floppy hat so I don't think sun was an issue for me.

I hope it works out for you!

xoxo,
Contessa

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