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More Chemo

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

About six weeks ago, I was told that there would be no more chemo for my metastasis to the lung and ribs. This threw me into a deep depression with extreme insomnia. However, at the next monthly visit, my medical oncologist offerred a series of Methotrixate infusions. Received one. The following week, I was running a fever. So I got antibiotics rather than chemo. Received the second infusion today.

I've been told that a good possibility is mouth sores, something I'm not looking forward to. Has anyone gotten mouth sores from chemo rather than from radiation? Has anyone survived mouth sores without a PEG? Anyone survive Methotrixate?

Looking for information. Rick.

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

Hi Rick,

Glad to read this post. Sometimes all we need is a glimmer of hope to continue the fight. Sounds like you have more than a glimmer. While I don't have experience with mouth sores due to chemo, it would seem to me that the methods to reduce the discomfort and pain of mouth sores from chemo would be the same as mouth sores from rads. A mouth sore is a mouth sore right? I survived the mouth sores until the end of treatment. Then it was PEG time. I know DonFoo put together an organized regiment of mouth sore remedy use that effectively got him through treatment without having to get a PEG and there are a few others that managed as well. I'm sure they'll chime in.

So the usual... baking soda/salt/glutamine rinses and Magic Mouthwash would be effective. Biotene Dry Mouth toothpaste for dental care was great when my mouth was hamburger.

Positive thoughts and prayers

"T"

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

Rick,

I wish I had something simple (that worked) for you.  The easier to do the better.  My sores were rad  caused and treatable with magic mouth wash (not much help).

Good luck on this treatment, I am staying positive for good progress for you.

Matt

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

You should do pretty well on methotrexate.  It is an old-line drug, that has been used to treat certain cancers, as well as rheumatoid arthritis and psoriasis for many years.  Probably fifty years.  Oral ulcers are fairly common, but you should not need a PEG tube.  Bone marrow suppression can also be seen, but if side effects become a problem there is a second drug they can give to revverse the toxicities, called a rescue factor. Methotrexate is certainly nowhere near the top  of tthe list in terms of making life miserable, so my hope is you get a good response and just carry on.

 

Pat

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Rick, 

Fortunately I didn't have either the peg or the mouth sores thru my chemo or radiation. Through  a meeting off H&N patients I learned about a product Caphosol , I asked my rad doc about it , he said you know it could be expensive , but I insisted he write the script. My insurance covered all but $50. It consists of 2 different viles  you mix together and swish in your mouth, I used it 4x a day along with the salt/baking soda mix..not one sore or issue with my mouth.

Good luck with your next step in the battle with this beast...my blessings , light, and the strength of a warrior be with you.

Linda 

 

Laralyn's picture
Laralyn
Posts: 433
Joined: Apr 2012

I think the mom in the testimonial I saw on the site was talking about her son having mouth sores from chemo, not radiation. It seemed to help both me and Phrannie!

Hard12Find
Posts: 200
Joined: Sep 2012

This is good news compared to your last post, and just wanted to say I am happy you are still fighting, sorry you have to be fighting, but glad you are. I can't help with the mouth sore question, but know I am here pulling for you and praying for that miracle.....

Jim

 

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

I hopped on the Mugard bandwagon which kept them at bay.  When I started the 5FU chemo tho, I got the pump off after wearing it for 4 days, and woke up with my lips were lined with sores.  I quit using the Mugard when I finished rads in June, so my mouth wasn't at all prepared for what this chemo was going to do.  I honestly don't think I would have gotten through the 9 weeks of 5FU without my PEG.  One thing tho...you've had this chemo twice, and so far no sores.....so you might not get them??  To be safe tho, maybe ask the Onc for Mugard....do 3 or 4 swish and swallows with it every day.

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

I am glad to see that the doctors have a plan. I am not sure about mouth sores from Chemo only but when you think about it, why not; it is a chemical. If you do get mouth sores and they gets too bad don’t be afraid to ask for the PEG, it is just a part of the life we live, better known as another battle scar. We are keeping you in prayer

God bless

Tim Hondo

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

rick, so glad 2 c u posting!!  very happy to read that you haven't given up and in fact have decided to fight!  know that we r all praying for a miracle for u.

dj

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

Rick, so happy they came up with another plan for you. Keep up the fight and prayers for ano side effects.

Debbie

katenorwood
Posts: 1808
Joined: May 2012

Been wondering about you !  I can't answer any questions on chemo.....but am reading any and all because this will be my life-line last defense against the demon lurking.  I'm keeping you in my thoughts that this will beat the beast back a bit, please keep us posted Rick !  Hugs sent !  Katie

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Hi Rick,

Glad you are on a new path to good health. Of course I'm no doctor but PDR is a widely accepted source for drug info. The link is here for methotrexate

http://www.pdr.net/drug-summary/methotrexate-injection-methotrexate-for-injection?druglabelid=764

Quoted:

ADVERSE REACTIONS

Bone marrow/liver/lung/kidney toxicities, diarrhea, ulcerative stomatitis, malignant lymphomas, tumor lysis syndrome, skin reactions, opportunistic infections, nausea, abdominal distress, malaise, undue fatigue, chills.

The key phrase is ulcerative stomatitis; basically mouth sores. This data is for THIS injected drug so it is unwise to take this description and broadly apply to all HNC "chemo" therapies.

don

 

 

josh r.
Posts: 179
Joined: Oct 2010

Rick,

Like so many others I am thrilled to see that you and your team have re-loaded. Positive vibes being sent out to all of us. josh r.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Thank you for your kind words, encouragement, and advice. I do receive Methotrexate via IV injection. (An infusion over a couple of minutes.) I also get some anti-nausia meds at the same time. Unforturnately, I am running a fever again, which may limit the chemo. Nothing is certain. And all of my treatments have come up short. So I'm not all that hopeful. But all I can do is attempt to tolerate the treatments that are suggested. Thanks Rick.

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

I also used Caphosol (?) I did not have mouth sores in my mouth but my lips were horrific. The ONC blamed the sores on rads and the Rad ONC blamed them on the chemo. I too was told to check my insurance before filling the script becausee of the expense. My insurance did cover it. Hope the fever subsides and you can resume tx soon.

God bless,

Candi 

mockingbird's picture
mockingbird
Posts: 3
Joined: Aug 2013

hi Rick,

I am not sure if I can be of help now or at any time later, but my husband also has mastetic head and neck cancer. It has spread to his spine and lungs, he is having his second go around of treatments now. This time it’s just chemo and he is getting mouth sores really bad. Eating and drinking is hard. Everything burns the mouth like it did with radiation treatments. We did find that a cool, damp paper towel folded down and holding it in your lips helps relieve some of the pain. Butter noodles are about the only thing he can eat right now. Make sure you rinse your mouth as the Dr. prescribes.  

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