Glad to find this forum

Life is Beautiful,

Your's is one of the most remarkable accounts I have read here, ever.    Your picture is brilliant !

I also did six cycles of ABVD (12 infusions). I must say that it got progressively worse with more treatment.  You are correct: Hair usually falls out after the second treatment, but for some it takes three.  I lost even my eyebrows and eyelashes, but it seems they took a bit longer to go, perhaps the fourth or fifth infusion, but I do not recall exactly. When my eyelashes went my tear ducts were inflammed, and my eyes watered all the time for a few days.  I have never heard how common loss of the eyelashes and eyebrows is.  I know that ABVD gets rid of all hair on the scalp in nearly everyone who gets over four infusions or thereabout.  My neighbor is on his third dose of R-EPOCH, and has lost most of his hair, but not 100%, so how chemo affects hair can vary.  I am a white male, but wish I had gone to Party City and bought a long dreadlock wig -- something nutty, to fit my personality. I also lost all facial hair.

After two or three infusions, I felt "fair," and even went back to work for several weeks. Then the ax fell, and I got extremely weak, virtually unable to get out of bed, and work had to end for another five months or so, until the meds started to wear off.  I slept most of the day, sometimes 18 hours.

ABVD CAN do all of the following, plus some other stuff.  It did all of this for me, but does NOT do this to most patients. Some people (especially on fewer cycles) have a much easier time. 

--Extreme weakness, sleeping all the time (17 to 18 hours per day, average);

-- Lost feeling in my hands and feet (Neuropathy). At times my feet went numb up to my knees, and my hads numb to about the elbows;

--Lost my sense of taste. I never had what is usually called "metal mouth."  My mouth always felt like it was full of salt. I had a few episodes of odd tastes.  For instance, I had a glass of tap water once taste like it was full of mud.  Associated with this was odd food cravings.  For about two months all I would eat was french fries, for instance, and I drank breakfast drinks. A friend had lymphoma as a teenager, and was on the older treatment called "MOPP." He said that he went from 220 to 120, and would eat nothing but pot pie for several months.  It is just crazy what can develop.  A former neighbor had NHL and was on some odd treatment that required in-patient infusions.  He went from around 300 to around 140, but is well and back to his former "girth."  He never got out of bed for five months, except to go for infusions, the doctor,  and to the bathroom. My wife and I thought that he had died, until I saw his room-mate taking him to the hospital one morning.  He could not really walk (the other guy was more-or-less carrying him), and he looked like he had come out of Auschwitz. But, as I said, he is like it never happened today.   I walked over a few days later after I saw him being carried to the car and knocked, to speak to him, and could see that they had put a bed for him in the living room, and he was lying on it.  He waved to me, but could not get up...

--Loss of appetite. (ABVD does not have Prednisone or any other steroid). Lost about 15% of my body weight.

--Loss of short term memory, or the ability to concentrate (termed "chemo fog")

--I NEVER had any nausea

I began treatment at 53, and am 58 now. Clean for five years.  Most of my side-effects have gone, or improved. My hands and feet are still numb, but not as numb. My appetite returned to normal.  My hair returned.  I have more energy, but still feel relatively weak.  My memory improved, but is not back to where it was before treatment.

As I suggested, you may have all of these symptoms, or none, or different ones entirely. They might be weak or strong in severity. MOST chemo side-effects go away after treatment for MOST patients. In general, most people just feel "like crap."  I felt like my blood had been replaced with lighter fluid, and my kids said a year later that "I smelled like chemicals all the time."

ABVD is extremely effective, and lymphoma is among the most curable and treatable of all cancer types.  I would go get a port installed tomorrow, if I had the slightest need to do so....

Stay on "Hope Avenue," and go only One Way. It will not be "Easy Street," but you will get there !

max

I've been on abvd for three months now. I have one more infusion in about a week and hopefully the scan will show no more cancer. My trip with abvd hasn't been as bad. I cut my hair right before treatment 2 and it kept growing. the only spot that doesn't grow is my mustache area. I still have to shave the rest of my face, but not my upper lip. My eyebrows have sort of disappeared. I planned my chemo on Thursdays so the worst days (2-3) were on the weekends. That way I only missed work on chemo days. If u want more info, my blog is olympiajeff148.blogspot.com Most important thing is faith and positive attitude. It sounds like you have both!!!

Hi Life is Beautiful,

Welcome to the group.  That's quite an experience.  Congratulations on your lovely baby! 

Everyone has a different experience with chemotherapy.  I was diagnosed with 3A Hodgkins Lymphoma in June of 2012 and did six cycles of ABVD finishing on Dec 31, 2012.  I was much like you.  The day of chemo I felt okay but then got tired on day 3 and 4.  I continued to work right through chemo (fortunately had a flexible job). Make sure that you are diligent about taking your anti-nausea meds.  It's much easier to pre-empt the nausea than try to deal with it after the fact.  Also, don't eat your favourite foods through chemo.  Not that they were a favourite, but I still can't face ramen noodles.  I ate them the first day I had chemo and now I can't stand the smell when they are cooking.  I never had much of a problem with weird tastes or anything.  I did have some issues with my fingernails getting black lines and my the toenails on my big toes were detaching a little bit, but they never came off.  There are other things that may happen. . . your white count could dip which might require injections of Neupogen to build it back up, but it's all doable!

I started losing my hair after the second treatment, then I went and got it buzzed because I was fed up with handfuls of hair everywhere.  I bought a wig at the cancer centre and ordered a second one from Vogue wigs.  I did lose my eyebrows and eyelashes, but you can use a pencil to draw them back and it's not too bad.  The Canadian Cancer agency has a program for women.  It's a makeover of sorts with free cosmetics and a bunch of tricks to use when dealing with hairloss etc.  It did wonders for me!

Just try and keep the big picture in mind. . . . .12 rounds and you will be done.   Have faith!  A positive attitude will go along way with helping to cope. 

I am now at 18 months in remission and had another three month follow up just today and it's all good!  Feel free to message me if you want someone to talk to or if you have any questions. 

Sharlene

Lifeisbeautiful said:

Hello Max,
No, the steroids

Hello Max,

No, the steroids are given to diminish the side effects like nausea and vomiting and also increase your appetite but they also effect my sugar levels. Fortunatelly I only take them for 4 days and then I'm off insulin until next round of chemo.

Sounds exactly like the Prednisone routine that patients on CHOP and EPOCH use. I had never heard of it with ABVD. Thanks for being a learning opportunity for me.

Max

The program is called "Look Good, Feel Better".  I have attached a link and it shows the places in Montreal where they offer the workshop.

http://www.lgfb.ca/en/workshop-finder/?province=10&city=167

Good luck!

Shar