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Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Hello! I've been trying to find a place where I could chat with people with the same problemsas mine and finally found it! :)
Here is my story.... I live in Montreal, Canada. Last year while pregnant (14 weeks) and after having two unsuccessful needle biopsies and then later having a biopsy with removal of three lymph nodes from my neck area under general anastesia, I was given the bad news that I had Hodgkin's Lymphoma. I had to "fight" with my doctor about the desire to keep the baby(I was his priority while my baby was mine) and I won! I was lucky enough to have some good news after the MRI, I had a non-agressive stage 2A Hodking's Lymphoma that didn't require immediate treatment. I gave birth to a big (10.5 pounds) healty baby boy two months ago (although it didn't go as planned, after being in labor for almost 24 hours, I had to have a C-section). I recently started the ABVD protocol of 6 cycles. Today I had my second chemo and I found it a little harder on me or I might've forgotten how it felt the first time around? Nothing too bad, just feeling tired, unwell and different than anything I've experienced before, kind of hard to explain. It feels like I'm in a dream or something. I still have  all my hair but after today I think I'm going to lose it soon since my scalp feels a little itchy and hot. I'm at peace with losing my hair on my head now but a little scared about losing my eyebrows and eyelashes. How common is that and does the treatment get worse or you feel the same side effects? My worst days were days three and four and then I felt pretty good the next week after the chemo and was even able to go to the GYM. Any advise or something I should know? I would really appreciate it.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

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

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Welcome Lifeisbeautiful !  Conratulations on the child and sorry you have to be here but you will find kind and loving folks here.

I have been in remission for almost 3 years from Diffuse Large B Cell Lymphoma.  My chemotherapy was different so I can't repsond directly to ABVD.  I can pretty much echo Max's comments but it is different for everyone.  As you progress, you will learn what to expect and it will be a little less frightening.  Regarding your hair, I normally recommend people buzz it off - that way you are in control of it and don't have to go through the turmoil of it coming out in clumps, etc.  You can even have a litte fun finding interesting/crazy head gear to wear :).  As I always say, attitude and humor are free weapons in this war - use them if you can.  Laugh as much as you can during this, believe me it helps.

Feel free to come here and share, ask questions and offer support when you are ready.  Good luck on kicking cancer arse!

Hugs and positive thoughts,

Jim

 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

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!!!

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

I would like to thank everyone who has replied to my post. It feels good to talk to people who have experienced the same thing and get some help and advise. I already cut my hair shorter and bought lots of nice scarves to wear when I lose it all. As I said before, I'm ok with it as long as it grows back after. I also have a port-a cath which makes it easier to get my treatment. Don't realy like havin another scar but c'est la vie! :) I've been having some problems with my diabetes (I'm type 2) because of the steroids they give me but with the help of insuline I'm starting to manage it . I was on metformin only before.

Today was a better day. Just feeling tired. I was told by my doctor that because of the steroids most people gain weight but so far I actually lost apetite. The first time food tasted different for a couple of days and this time it's not as bad. For some reason it's harder to swallow food, especially bread. The first night (just like last time) I had insomnia and hope to get some sleep tonight. I feel numbness in my fingertips but it's not too bad. Tonight I felt a little better so I took my little boy for a walk. This is actually the hardest thing for me, not the chemo or side effects but not being able to take the same care of my baby. I'm so lucky to have my mom and my husband who are helping but I still can't help but feel guilty about it....

As for the chemo fog, it's weird and funny at the same time.  I had to get a shot of neupogen (my white blood cells were low) today and yesterday when the farmacy sent the driver to bring it to me something funny happened. He called me from downstairs to let him in by diling the code and under the effect of chemo I told him to dial the number again instead of just letting him in. And there are so many instances where I do some silly things or can't remember what I wanted to do. I can laugh at myself though and I'm an optimist by nature. As my doctor said to me : "If you had to chose wich kind of cancer would be better to get, Hodgking's Lymphoma is the best!" So I consider myself lucky. :)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

I am curious, Lifeisbeautiful:  You take a steroid because of diabetes ?  That is the way I read your comment, and I have never had to deal with that terrible disease myself.  I was wondering because ABVD (with or without Rituxan) does not include a steroid .

max

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

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

Bill_NC's picture
Bill_NC
Posts: 133
Joined: Jan 2013

As my doctor said to me : "If you had to chose wich kind of cancer would be better to get, Hodgking's Lymphoma is the best!" So I consider myself lucky. :) 

Exactly what my DR said a year ago. I finished 6 cycles of ABVD (12 fusions) and by my 2nd cycle my blood sugar shoots to sky. I was able to manage it with janumetxr until I am done with my treatment. janumetxr does not have side effects you may have with other diabetic medications. 

I just though to drop a line and welcome you. Wish you the best and fast recovery.

ThisisLife's picture
ThisisLife
Posts: 101
Joined: Jul 2012

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's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Thank you Sharlene!
Eventhough I have my family and friends helping me and being supportive, it's nice to talk to people who know exactly what I'm going through. And yes, you are absolutely right, the way I look at it is 2 down 10 more to go! I have no doubt I'll beat this cancer and then my husband, my little baby boy Dante and I we'll all go on a trip to celebrate life. :)
I also wanted to ask you where exactly did yo find the Canadian Cancer agency for women? I just like to be prepared in the event I do lose my eyebrows and eyelashes. I would really appreciate it.

Natasha

ThisisLife's picture
ThisisLife
Posts: 101
Joined: Jul 2012

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

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Thx! :)

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