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side effects with methotrexate

Jim M
Posts: 25
Joined: Jun 2017

Hello everyone,

  I am new to this board. I am diag. with DLBCL with involvement in the testes. I had my first treatment with R- chop and received methotrexate (intrathecal . I have been having pain and tightness in the head and back of the neck. It was so bad one day I was injected with voltaren and dexamethasone. The pain returned but not as intense. My heartbeat was faster, but temporarily for about 20 minutes. When I lie down for awhile, it helps.  How do you manage these side effects? When is it necessary to go to emergency and how would they treat it?    Thank you in advance for your assistance.    Jim M
Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

I cannot help very much but can tell you what I experienced and was told. I had 4 intrathecal treatments. 

I have headaches more now but not severe or long lasting. My Dr said to take Tylenol and drink lots of caffeine after treatment if I had problems. Of course if it is a severe headache with nausea it would most likely require a blood patch. Luckily I did not have that. Of the 4 each treatment level of discomfort was a little different. Most of the discomfort was during the treatment. All done now and just one treatment of RCHOP left hopefully. Should find out Monday. The day after intrathecal I had RCHOP so the prednisone may have hidden some of the side effects.

Samdy Ray

Jim M
Posts: 25
Joined: Jun 2017

Thank you Sandy. I will have Tylenol available. Caffeine is a great idea. I´ll probably go with Mountain Dew. Hopefully I can find it here in Costa Rica. Best of success to you.

Evarista
Posts: 254
Joined: May 2017

Hi Jim.  I also have DLBCL. Diagnosed in January and finished my 6th round of R-EPOCH ~ 4 weeks ago (R-CHOP & E-EPOCH are similar except that EPOCH has one additional drug).  While I can't help with the current issue, my doctor attributed my brutal headache after my second intrathecal MTX to a low-grade meningitis.  For the next two treatments, she treated me as follows:  oral Fioricet ~30 minutes before the spinal plus intrathecal co-administration of steroid (unsure if it was hydrocortisone or dexamethasone) along with the MTX. My doctor also requested that they reduce the amount of fluid being collected, although doing so meant giving up one of the tests, cytology I think. Your doctor will have to be the judge of that bit.  

This combination worked great for me and I did not have any more headaches with the intrathecal.  I did still have several days of migraines after completing each round...Tylenol for that.  As Sandy mentions, if there is indication of a spinal fluid leak, a "blood patch" may be indicated.

Do discuss the problem with your doc going forward.  And be sure to stay on top of the vincristine gut motility/constipation issue throughout.  Best of luck with it all and don't hesitate to ask questions.

Jim M
Posts: 25
Joined: Jun 2017

Thank you Evarista. I am unfamiliar with the blood patch procedure. How do you manage the constipation? I use a fiber drink and prune juice twice a day.

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Jim,

I had chemo called Hyper-CVAD, which included 8 intrathecals, 4 with Methotraxate and 4 with Cytarabine. I had the awful headache after the 2nd one. The nurse told me to drink a Mountain Dew soda as soon as possible after the procedure. I had one after every intrathecal and never got the headache again. Worth a shot?? I am guessing it's the caffeine. Wish you the best with your treatment!

Cat

Jim M
Posts: 25
Joined: Jun 2017

Great idea catwink. Hopefully I can find Mountain Dew in Costa Rica. Best of success to you.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

Jim,

Unfamiliar, but here is a data sheet on it from chemocare.com, a Cleveland Clinic site, sponsored in part by Scott Hamilton (former ice Skating superstar). 

Site says severe headache or cognative imparement warrent immediate call to oncologist. It also lists this effect as rare/uncommon.

max

http://chemocare.com/chemotherapy/drug-info/methotrexate.aspx

 

.

Jim M
Posts: 25
Joined: Jun 2017

Thank you Max. I will look up the data sheet. best of success to you.

Sal0101's picture
Sal0101
Posts: 124
Joined: Sep 2015

Hi Jim,

I also had DLBCL. Along with the R-Chop I had 3 IV methotrexate infusions as a precaution because mine first showed up in my breast. My headache came after my spinal tap, so I'm thinking yours is not from the methotrexate, but the way it is administered. The headache lasted for days even with caffeine and Tylenol, so I ended up having a blood patch, which worked like a charm.  

As far as the constipation I took Miralax everyday.  The day before and day of my R-Chop I also took Senekot. 

Sharon

Jim M
Posts: 25
Joined: Jun 2017

Thank you Sharon. All the best.

Evarista
Posts: 254
Joined: May 2017

Jim: a note of caution about use of Mountain Dew as a source of caffeine:  the prednisone in your chemo cocktail can cause your blood glucose to rise significantly, so you need to be careful with carbohydrate/sugar intake.  You really do not want to complicate your clinical situation by pushing yourself into the "diabetes" zone (my bld glucose doubled in 24 hrs).  If you can find diet MDew, then great. Otherwise, use in moderation or find an alternative.  In the U.S., there are over-the-counter acetominophen (= "Tylenol") formulations that contain as much caffiene as a 12 oz MDew.  But, again, you need to be careful & check labels: many of these also contain aspirin and you cannot have aspirin.  So read carefully & check with your doctor before using.  About the blood patch: my understanding is that this is only used when you have a leak of spinal fluid.

For constipation: sounds like you are on the right track.  I & others in this forum found that starting a stool softener or laxative a day or two before each round of chemo & continuing that while getting chemo was helpful.  I went further & brought my own fiber cereal to the hospital for daily breakfast.  I also used a recipe provided by our geriatrics clinic:  in blender blend together 1/3 portion powdered fiber cereal, 1/3 portion prune juice, 1/3 portion applesauce.  Store referigerated for no more than 1 week; 1 - 2 Tblsp daily. This is personal preference though.  There is a discussion on this subject in the thread entitled "Large B-cell lymphoma" from a few days ago (jump down towards the end). A last comment about hydration: the fluid entering your body via the I.V. is not lubricating your bowels the way drinking fluids does, so it's important to keep up normal oral fluid intake. Best of luck!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

"Mountain Dew" of course originally was a name of moonshine.   Living just below the mountains of Asheville, NC, in the heart of moonshining country, it brings back memories.  NASCAR began after moonshine runners souped up their cars to run the mountains delivering the product.   Fully legal moonshine is now extremely popular in boutique bars in the Upstate region of S.C., and around much of the nation.

The Mountain Dew soft drink my brother and I used to drink in the 1960s came in the dark green glass bottle, and had on the bottle a hillbilly holding a jug, from which the cork had blown out and gone through the brim of the hillbillie's hat  -- an obvious reference to the moonshine roots of the name (this image was trademarked in 1948).

Mountain Dew is of course today one of the most popular drinks among teens and young adults ("Doin' the Dew"), and does have substantial sugar and caffine.   Crush, Nehi -- all of the old southern soft drinks from the 1950s were (are) extremely sweet.  Not the most healthy, just the most delicious.

Diet Mountain Dew is available virtually anywhere regular Mountain Dew is sold.

https://www.youtube.com/watch?v=ryOZ8otRhdg

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

yahoo! Yahoo! mountain Dew! Those who refuse it are few. There's a bang in every bottle of good ole Mountain Dew! Yahoo, Yahoo, Mountain Dew. I thought you grew up on the beach.

Jim M
Posts: 25
Joined: Jun 2017

Thank you for the great advice Evarista! Best of success and blessings to you!

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

Hey Jim my name is Justin I also am diagnosed with DLBCL in the testis. I haven't received any treatments and haven't even seen my oncologist yet. I'm curious to know how they reached your diagnosis. Did you just have lymphoma in your testis or was any other extranodal involved or lymph node?

Jim M
Posts: 25
Joined: Jun 2017

Hi Justin. Sorry it took me so long to see your question. I discovered the lump on my testicle, had it removed and it was biopsied as DLBCL. Ct scans didn't show activity elsewhere. To date I haven't had a PET Scan. Hooe this helps. 

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

I just had my 2nd inthrathecal methotrexate treatment. The first treatment wasn't a great one... I had a headache off and on for over a week. It wasn't accompanied by any other symptoms and it was manageable. I just had my 2 Nd today and the procedure itself went better than the first one but I do have a slight headache not really that bad but along with my headache I have upper back pain which isn't consistent but when it comes its pretty bad. It feels like my nerves more than anything, kind of a weird feeling and it's hard to move but when I stretch it out it relieves the pain. Anybody experience this?

Jim M
Posts: 25
Joined: Jun 2017

Hi Justin. I saw your new question posted to me and I am not sure if my response went through so I will answer here. I felt the methotrexate was harder than the R-Chop. After the 1st and 2nd treatments the headaches were so bad I got injections of painkillers: voltaren and dexamethasone.  The headaches went away and returned several days later but at a tolerable level. I neverhad upper back pain but I did have neckaches. What really helped was taking 2 acetaminophens before the treatment and lying flat on a bed for 2 hours immediately after treatment, without a pillow for the head. I also needed an injection of painkillers after my last [ 6th] treatment. My doctor told me drinking coffee helps to get rid of the pain, however I am not a coffee drinker at this point (sad because Costa Rica has some of the best). Between treatments drinking plenty of water as well as lying in bed helped get rid of the headaches. Hope this helps.

Justiny35's picture
Justiny35
Posts: 22
Joined: Sep 2017

Hey Jim and everyone. Just wanted to update but after my 2 Nd treatment of inthrathecal methotrexate the headaches were pretty bad and lasted over a week again. I threw up on the 3 rd day because my headache was so bad. My back pain turned into neck stiffness which seemed to hurt just as bad as my headache. I told my oncologist he recommended taking Tylenol and Xanax to help me relax and a heat pad or send me to the hospital to do a blood patch. I decided against the blood patch and choose to rest at home due to the fact I managed the first time by laying flat on my back. I figured the first time my headache lasted a week so I felt it would be the same. So I followed the docs advice with taking meds and a heat pad. My headache went away after 8 days as well as neck stiffness. It wasn't an easy 8 days but I managed. I do want to say as well the first time they were only able to aspirate 3 cc's of CSF fluid and put in 5 cc's of methotrexate. The 2nd time they weren't able to aspirate anything and put in 5 cc's of methotrexate. I just had my 3 rd injection and the Dr was finally able to aspirate 5 cc's of CSF fluid and injected me with 5 cc's of methotrexate and I have no headache. I think that's the key if you put in 5 cc's of methotrexate you have to aspirate 5 cc's of CSF fluid or there will be an imbalance. Just my observation...I was well hydrated before this procedure too which I think helped with aspirating CSF fluid. I could be wrong but me being hydrated and the doc aspirating 5 cc's of CSF fluid were the major difference between this time and the first 2 times. 

lindary's picture
lindary
Posts: 633
Joined: Mar 2015

Tell your dr. They need to know these kinds of things. 

Mimstar
Posts: 1
Joined: Jan 2018

Hi there,

I'm in remission from double hit lymphoma, my treatments finished in December 2017.  I was treated with R-CODOX-M & IVAC, which includes 12 intrathecals of methotrexate.  
My doctors told me that if I get a headache after an intrathecal it would be because they didn't take the same amount of spinal fluid out as the amount of methotrexate being put in - it has to be exactly the same or you will get a shocking headache that will last for days. They also insisted that after each intrathecal that I lie down for an hour.  I think my oncologists are the best because I didn't have any headaches!  I did receive a large dose of methotrexate via IV as well for each cycle of R-CODOX-M which left me with horrible mucositis - took a couple of weeks for my system to recover.

Wishing everyone the very best,

Mim.

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