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Lymphoma Newbie

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

The cancer gods have thrown me a double whammy. After kicking anal cancer last year, I've now been diagnosed with Stage III (Maybe IV) Hodgkins Lymphoma, so I guess I'm moving to this forum now. I had a marrow biopsy to see if it was Stage III or IV but it was inconclusive, and I ain't letting 'em do another (ouch) since it wouldn't make a difference in my treatment anyway. Just started ABVD chemotherapy last Friday. So far the only side effect I have noticed is a painful tongue ... not so much the tongue hurts, but my taste buds hurt when I first start eating or drinking. Is there something I can do about this other than swish with Magic Mouthwash which will kill the taste of my food?

Matt

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Welcome, Matt.  Sorry about a new cancer fight on your plate.

Like several folks here, I did six cycles (12 infusions, or six months) of r-abvd- which is the most common first-line treatment for HL. I also was Stage III.  Exactly as you noted, my doctor, when I asked about my bone marrow biopsy being negative, stated that it is better to be negative than not negative, but that my treatment would have been identical either way.

What strain of HL do you have ? (There are five common strains of HL, and 25 or more relatively common strains of NHL.)

Regarding tastes: I do not recall having taste changes after only one infusion, but I did eventually lose essentially all sense of taste. I didn't get the common "metal mouth."  My mouth tasted like it was full of salt all the time, but most foods i could not really taste at all. Rarely, I had very odd taste sensations, such as when once I started drinking a glass of tap water, and it tasted like mud.  Fortunately, that only happened once.

I never got mouth sores, but it seems many people do. When I was about to receive the Adrimycine ("Red Devil") the infusion nuse always had me start eating ice, and I ate ice until that cylinder was finished.  No one else here has mentioned being instructed to eat ice while receiving that med, but I did, and never had a mouth sore.  There is certainly no reason to NOT eat ice during any part of the infusion process, so you might want to ask your nurse about it.

Neary all abvd folks lose their hair shortly after the second infusion. I lost ALL my hair, including my eyebrows and eyelashes, so plan on that beginning soon.

ABVD is usually very effective, and most HLs go into remission during treatment,so hope for the best.  Do mention what strain you have, since that can make some difference in exactly what you can expect. The strain should be discussed on your biopsy report, whcih your doctor should have given you. If not, he will,  at no charge -- you paid for it !

max

 

 

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Matt and welcome to this forum! I meant to respond to you on your other post and I think I think there was a problem with the site or my computer that night so it didn't get posted.  My chemo was different (R-EPOCH) and had an issue with a mouth sore once.  What helped me after that was to avoid anything acidic during and for a few days after treatment.  I avoided organge juice, ketchup, tomatoes/sauce, vinegar based anything, etc.  I never had issues with my mouth after that.  Don't know if this will help you but it certainly shouldn't cause a problem to try it.  

Sorry you are having to deal with a double whammy but know you are not alone here.  I hope things improve for you and sending positive thoughts your way.

Hugs - Jim

illead's picture
illead
Posts: 566
Joined: Aug 2012

Got a laugh out of the title Undecided Just wanted to add our welcome.  You will find very kind folks here with a great sense of humor.  Sorry you are fighting your 2nd battle, we hope it is a successful one.  We look forward to hearing from you, please come back anytime, and of course let us know how things are going.

Bill & Becky

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

The acrid taste, I figured out, was buildup on my dentures. Guess I have to clean them after every meal instead of just at night. But I'm wondering what's in store as therapy continues. Will the side effects get worse? Will they back off a little as I get used to the treatment?

jimwins's picture
jimwins
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Joined: Aug 2011

Man, I'm having a week of waking up in the middle of the night !  (I've been up since 2:00am and I'm beginning to feel like Sue - our loveable night owl here in the group. :)).

I don't have experience with ABVD but generally some side effects will get worse with most chemo - especially fatigue.  I saw you had chemo before with Mitomycin (which I found out is an antibiotic used for certain cancers and has similar side effects).  Some side effects seem to be somewhat individual but fatigue, hair loss and lower blood counts are fairly common.  Prednisone (steroid) has its own set of reactions as well.  There are folks here with ABVD experience who should chime in soon.  

Hang in there!

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Greetings again, Matt.

As Jim noted, most chemos are indeed "cumulative" in the intensity of their side-effects.  I did abvd, as I noted above, and it is pretty common, so you should get a lot of imput.  All of these alphabet soup combinations usually share at least one or two drugs, but packaged together, each has its differences. CHOP and ABVD both have Adrimycin, for instance, and ABVD has Vinblastine, whereas CHOP has Vincristine, which are almost identical chemically and in side-effects.

Another determanitive in how severe your side-effects become is how many cycles you receive. Patients who are late stage (III or IV) almost always get six cycles (=12 infusions; six months of treatment) and NO radiation, whereas early-stage Hodgkins's will normally get fewer cycles, and may or may not receive radiation (application of radiation usually depends on the presence or absence of what is called "bulky disease"). ABVD "cycles" are very different from most other combinations, in that all drugs are given together at the same sitting. One day at the infusion clinic normally lasted 8 or more hours for me. I got there before most of the nurses arrived, and was there when they went home that afternoon.

One other common factor in severity is the patient's AGE. Usually, the older the patient, the more severe the side-effects can become. This is a general truth, and some older patients have little trouble.

So, experiences on ABVD can vary dramatically. Ater three infusions, I actually went back to work for a few weeks, and I have heard of people waltzing through treatment like it was nothing.  A perfect storm later came my way, however.  Because I was relatively older during treatment (began at 53), late stage (III), and required six cycles, by my third month ABVD had stomped my ass. Think of the fight scene in the original Godfather movie, when Sonny beats his brother-in-law in the head almost to death with a steel trash can lid.  If felt about like that....

My experience during my last three months was as follows: 

I slept about 18 hours per day.

I had no sense of taste. 

My breathing was severely impared (a common side-effect of Bleomycin) such that even while motionless in bed at times I could only pant like a dog to breath. Bleomycin causes lung toxicity in 10% of all users, and fibrosis in 1-2% of all users. You you develop a severe cough, call your doc right away.   http://chemocare.com/chemotherapy/drug-info/bleomycin.aspx#.UxdjRTAo670

I got severe neuropathy, and could not feel my feet at all much of the time. My hands were severely numb as well.  Nearly five years later, I can type only with two fingers, and cannot turn the pages of a book without wetting them. I have been in a clinical trial for neuropathy since, to no benefit at all.  My nails turned purple and became very gritty.

I lost all hair, including my eyebrows, eyelashes -- even my nose hairs (tyring to avoid TMI here). 

I felt like I had the flu all the time (severe muscle pain; this is listed in chemo side-effects as "Flu-Like Symptoms"). Three of the drugs in r-ABVD cause Flulike Syndrome, so the chance of gettin it is pretty high. Rituxan is one of these drugs (you did not mention if you are getting Rituxan or not; if you are, your combo will be written as "r-ABVD").

http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx#.UxdgjjAo670

Friends told me I was grey-colored, and my kids said I smelled like chemicals all the time.  I felt like I had lighter fluid in my veins.

I lost my memory and ability to concentrate, which is termed "chemo fog" or "chemo brain."

THAT is what late term ABVD CAN (may or may not) do for you.  Strap into your chair and be ready.  Most of these side-effects in most patients diminish or go away over time.  I believe ABVD used on terrorists at Gitmo could get them to talk.

 

Finally, and most importantly, note: I am cancer free for nearly five years now.  I would start 50 cycles of ABVD tomorrow, if necessary.

This link lists all of the drugs in r-ABVD, with detailed, statistical info regarding all side-effects:

http://chemocare.com/chemotherapy/acronyms/abvd.aspx#.UxdhkDAo670  It also has the data on all FDA-approved chemo drugs in use in the US.  It is partially run by Scott Hamilton, former ice skating champion.  The info is all rock-solid, and the site is very easy to get around in.

Wishing you the best. You can do this thing !

max

allmost60's picture
allmost60
Posts: 3177
Joined: Jul 2010

Awesome post Max! That's why I bumped it up..I knew you could give Matt all the answers he needed! Good job! Sue Smile

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

Thank you Sue. We have not spoken in some time.

Stay well and bless your health,

max

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

Thanks, Max, for the straight dope. They've got me slated for six cycles, too. Tomorrow is the second half of my first cycle. The worst part has been the symptoms that are TMI. (Let's just say I have a vague idea what giving birth might feel like!) But that just resolved today and I'm actually feeling okay. Thanks to all of you for holding my virtual hand.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Matt,

Air, water, advice, and hand-holding are all free at CSN !

Even 'TMI' issues can be addressed here privately -- there is a feature for you to e-mail any registered contributor, if you feel the need.

As all responders stated, every case is unique, and your experience (statistically speaking) should be much milder than mine ; most are. All that mattered to me, however, was SUCCESS, and I was blessed with that.

 

max

Rocquie's picture
Rocquie
Posts: 524
Joined: Mar 2013

Matt, I had a different chemo--R-CHOP. I think almost everyone here says the more times they had chemo, the worse it got. I just wanted you to know that was NOT the case for me. Mine got easier over time. By easier, I mean I had learned exactly what my side-effects were going to be and when, and had learned how to handle them. I knew which days to take a laxative and which to take kaopectate. I knew which days my blood counts were going to be lowest, so I knew not to be around people then. I learned how to handle the pain from the Neulasta shots. I knew when I needed a blood transfusion and could drive myself to get it. 

I also didn't mind the Prednisone. On those days, I went ahead and took an Ativan along with it (to temper the "edginess")  and enjoyed the extra energy. I would tell my Doctor when he asked, "Oh, I feel fine today, I'm on performance enhancing drugs".  

Everyone's experience is different. 

Hugs,

Rocquie

 

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

I just started Cycle #2 today. Side effects usually set in at about 24 hours for me. I've been suffering from weakness and instability, too. I fall down a lot and get dizzy standing. Dehydration of course. They have me coming in for IV fluids every other day for a while and a full-blown blood transfusion on Friday. I'm also getting a walker to help me get around the house. It has a seat that lets me sit at the right height to work at the kitchen counter so I can feed myself. That, and when I am waiting for the bus, I will always have a place to sit. :)

The hair is gone now. I kinda cheated there. When it started getting patchy and ugly, I took the clippers to it and finished the job. I'm actually liking the look, actually, and may choose "to baldly go" from now on.

allmost60's picture
allmost60
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Hi Matt,

  Dang...sounds like you have had a rough go of it with this treatment...so sorry! I personally like the "bald" look on men...looks sexy! WinkMy hubby is thinning big time and I've told him to shave it off, but he won't do it. You hang in there and I'll be sending good positive thoughts your way with my prayers. Best wishes...Sue

(FNHL-stg3-grd2-typA-Dx 6/10-age 63)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Is that you Matt ? I thought you were Bruce Willis ! Or some other dashing young movie star !

Six months on abvd is a long trek. Just be mentally geared for the long haul.

I recommend you ask your oncologist: "What will my final, total dose of Adrimycin be?"   It is a question worth asking.  He or she will know exactly what you are getting at.

max

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Matt!  Thanks for checking in.  I think you look better than Bruce Willis ;).  I had to get my drivers license renewed with photo shortly after I finished chemo so I refer to it as my "Legal Alien" ID complete with no hair or eyebrows and a scant few eyelashes :).  I haven't had the picture taken again yet because it reminds me of how far I have come thankfully.  I got pulled over a year ago because of my lead foot and the officer was double taking the ID and me.  I said "that was taken right after chemo".  He let me off with a much reduced infraction.  Now I don't recommend chemo as way to get a reduced speeding ticket!

I hope the side effects lessen and you feel better soon.  Try some fun hats or head gear.  I wore knit caps to keep me warm and funky "dew rags" that kept the nurses guessing.  I had to get a fedora also and wore that often when I went out.

Hang in there and big hugs,

Jim

GKH
Posts: 328
Joined: Jul 2012

Hang in there Matt!. Your smile is inspiring. All my best wishes!

illead's picture
illead
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Joined: Aug 2012

Stick with us new friend, we're here to support, comfort, and give good laughs when needed.  Better to look like Bruce Willis.  Bill never lost hair but with age it started looking like Frank Barones in the back (Evby loves Raymond)  He now gets it buzzed with a No 2 and looks great except he has a bald spot on the nape of his neck....weirdCry

Hang in there, Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

B & B,

Since chemo, I buzz my own hair with a #4 guard at home. Guess I am a "long hair" compared to Bill...

My favorite line from the old man (now deceased) on Everybody Loves Raymond :  Raymond and Deborah had been fighting. Raymond is over with his mom and dad, and the mom says, "Raymond, I told you Deborah was much too pretty a woman for you to marry !"

The old man chimes in: "Yea ! I never made that mistake !"

max

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

Since it's almost impossible to mess up a haircut like this, I can do it myself and save money on hair stylists and shampoo. Laughing

Bruce Willis, eh? Yippee ki yay, mother... um... lymphoma!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Matt,

I remember that line...keep being a superhero.

max

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

I must be doing something right this time. Two days out from my latest treatment, my mouth doesn't taste like a car battery yet. Had a very busy week. Two visits just for IV fluids because I was dehydrated, and a full blown blood transfusion yesterday. Maybe that's what's ameliorating the side effects?

I've also had a problem with muscie weakness, especially in my legs. A few "I've-fallen-and-I-can't-get-up" moments. Thankfully, my roommate has been acting as my guardian angel, but I needed more help around the house, so they issued me a really nice walker that even has a seat where I can sit and work at the kitchen counter. (I can cook; my roommate, alas, cannot.)

GKH
Posts: 328
Joined: Jul 2012

For sure dehydration is a major threat. Try to drink a lot of fluids! Good luck friend!

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Glad you're doing better this time!  I'm sure the hydration and transfusion have helped. I'm glad you have someone there to help you out.  

Thanks for the update and hope things keep improving buddy.

 

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

Here's a rather annoying symptom I've been having: hiccups... intractible, rapid-fire hiccups that are more like diaphragm spasms. Of course, it gets me a zillion suggested hiccup cures. Is this what they meant by lung toxicity from the chemo? (I forget which one.)

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

Matt,

I studied Bleomycin Toxicity pretty extensively, and to my knowledge, hiccups are not related to that condition. The main symptoms of toxicity are severe, unending cough, and shortness of breath.

A nurse with a trash bag filled with water and a garden hose, showing up and saying, Mr Butts ! Your next infusion !" might scare them out of you .... ;)

max

Shoopy
Posts: 210
Joined: Jul 2013

I remember having uncontrollable hiccups and diaphragm spasms after my R-DHAC treatments.  I still get the spasms sometimes.  Unfortunately, I couldn't figure out how to make the less of an PITA.

Karl 

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

… since I posted here, so I should drop a quick note and let everyone know I'm still okay. More than okay, I'm getting better and better. After my hospitalization in April, they took the B out of my ABVD regimen and scaled back the dosage on the A, V and D. Side effects have been minimal and my weight is coming back up … +30 lbs since April. My strength is returning and my hair has even started growing back (or trying to, as I've decided I like the look so I'm keeping my head shaved. About the worst problem I have is that now and then the lymph nodes in my back start complaining… the other day I was having back spasms so bad I probably woke the neighbors with my screaming, but it responded well to the pain killers and I felt fine the next day.

I'm two-thirds of the way through chemo (last treatment will be Sept. 30th). We'll find out more when I have my next PET scan on Sept. 15th.

 

jimwins's picture
jimwins
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Hi Matt!  It's wonderful to hear from you and that things are better.  I'm happy to hear you're gaining weight and strength - good signs I think.

Keep getting better and good luck on your scans on the 15th.  Please write when you can or feel up to it.  Again, I can't tell you how good it was to hear from you.  It made my day.

Hugs,

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

I very much appreciate you checking in Matt, as I am sure many here do also.  I am also delighted that the meds seems to be working and that you have regained some of the weight loss.  Please do continue to write. 

max

allmost60's picture
allmost60
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Hi Matt,

  Thanks so much for checking in. I have thought about you many times and prayed you were ok. Your wieght loss had me very worried, but I'm so happy to hear you are gaining it back! You will finish your chemo on my birthday.."yeah"....I will double celebrate for both of us. By the way..I finally convinced my hubby to buzz his hair and now he loves it and say's he won't ever grow his out again. You take care and check in when possible. Keep up the good progress. Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63. Relapsed in April 2014..right eye, right cheek and right paratracheal node. Radiation completed on the eye and it is doing great. Doing watchful waiting for cheek and chest. New scans mid September. Smile 

illead's picture
illead
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Joined: Aug 2012

I too, have been worried.  We have mentioned from time to time that we were concerned about you so we sure appreciate the good news.  What a relief.  So glad the weight is coming back on.  Wish I could give you some Laughing.  Please let us know how your scan turns out.

Wishing you continued improvement, Becky

 

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

Just thought I'd pop in with the latest update. On Monday (World Lymphoma Day, as it happens) I had my latest PET scan. The next day my oncologist reviewed the results with me, even comparing it side-by-side with my original scan from February. The difference was dramatic. The latest scan is clear, showing no evidence of active cancer. Just one tiny little spot she thinks is scar tissue from a broken rib. (I did have a broken rib in 2009, so I tend to agree.) WOO HOO!!!

I love getting good news… ’specially from my oncologist!

Matt!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Absolutely fantastic, Matt ! I honestly was thinking of you yesterday.  I know you were in a rough way there for a time, during all of that weight loss.

I know all here appreciate your news,

max

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

Since being hospitalized, I've gained 35 lbs. That's almost a 40% increase! You can see it in my face (wish I had before and after pics) … I've gone from a sunken, skeletal face to having chipmunk cheeks, and I don't mind a bit.

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 46
Joined: Jul 2014

I'm very happy for you Matt! Here I am complaining about not losing weight after pregnancy when worse can happen, like losing too much weight. I love hearing good news and I hope there will be only good news for you from now on.

 

All the best! ;)

jimwins's picture
jimwins
Posts: 2085
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Thanks for making my day, Matt! That is great news.  Keep on getting and sharing good news, buddy1

Jim

allmost60's picture
allmost60
Posts: 3177
Joined: Jul 2010

Hi Matt,

 "AWESOME" news!!!! I'm so very happy for you! Good to hear your gaining weight and getting better with each day. Hang in there andyou have my prayers for continued progress and healthy days! Thanks for sharing.

Best wishes...Sue

amanda_christy's picture
amanda_christy
Posts: 60
Joined: Aug 2014

Thats so cool! Congrats Matt!

So happy to hear ur on the mend and yaaay to 'chipmunk cheeks'. Wld love to see that lolz

Ive follwed ur posts since i joined the site actually :-) no im not a weirdo!

xoxo

Christine

 

Jeff148's picture
Jeff148
Posts: 115
Joined: Apr 2014

Been thinking about and praying fo you too. I'm so glad for you! Hope you have been playing your instrument with your group!! Music is healing physically and sprititually.

illead's picture
illead
Posts: 566
Joined: Aug 2012

That is the greatest, know what a relief it is (heard that before somewhere) Wink.

Wishing you continued good health, Bill & Becky

Folks24
Posts: 104
Joined: Feb 2007

Congrads on your latest PET scan. I am an NHL survivor of 2 years.

I had very bad mouth sores for awhile on chemo & dr said due to white cell count. Looked like big blood drops in my mouth.

But the thing I remember most, is after my 1st c chemo treatment I had this funny smell that I went crazy trying to find out what is was around the house. The oncologist finally told me the strange smells sometimes come with the chemo.    The best I can describe the smell is Maple Syrup Hot Dogs.  To this day, I'm not much into either one of those.

MattButts's picture
MattButts
Posts: 37
Joined: Mar 2012

I've reached the end of the road, or at least the end of this one. My last chemo treatment was on Sept. 30th and the side effects have been minimal in the past months since they switched me from ABVD to AVD chemo (or, as my onc calls it, "chemo lite").

I've updated my photo on here because the weight I've gained back is showing in my face. I found three face pics of myself and created a comparison, but I don't know how to include pictures in these posts. Now all I gotta do is keep smiling so these chipmunk cheeks don't turn into jowls.

Laughing Matt

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

So great to hear from you, Matt!  You made my day.

https://www.youtube.com/watch?v=ZhidMqEMNEU

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Lookin good there Matt !  Of course, no one looks very good "in the chair.'

Delighted you are finished with treatment, and thank you also for sharing.

max

illead's picture
illead
Posts: 566
Joined: Aug 2012

I was nervous to read your post with the title. I am so happy that it meant good news. Many congrats, that is just wonderful. I remember the time we were very worried about you. I can really see the peace and relaxation in your face. Hoping for many many years of that.

Best wishes, Becky

 

 

 

 

givingrace's picture
givingrace
Posts: 108
Joined: Nov 2012

God bless you Matt !

Very happy for you.

You are a true fighter. 

Keep smiling :^)

~GG~

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