I have a question

suelanders

I have a question for all... I had my first treatment of Chemo last Wed. I am feeling really good, some small side effects, but one that the nurse had not heard of, my saliva glands hurting. It seemed that no matter what I ate for the first three days I would have a lot of pain for the fisrt few bites, like when you take a bite of a lemon (only much worst). It has been 6 days now and it seems to have let up. Has anyone had this symptom? Also should I still stay away from cold drinks after the first week? I would love a glass of ice waster!!!. I go back for my next treatment a week from tomorrow.


Sue

LivinginNH

Same symptoms for me
Brief update on my status: colon resection surgery, 4 rounds of chemo, liver resection surgery, and I just had round 2 of 8 of post-surgery chemo. I, like you, would describe the side effects as relatively minor. I have had exactly the same symptom you described with the glands. It is at its worst on the day I go for treatment, and subsides gradually over the 2 weeks between treatments, but doesn't really go away. During the surgery break, it went away completely after week 3 beyond the last chemo treatment, so, in my case anyway, there was nothing lasting. When I returned to chemo treatments, however, it came right back. My oncologist also had not heard of this side effect. The chemo has been working very well for me, so, maybe it is a sign that the chemo is working great :-)

As for the cold drinks, I too am craving an ice cold drink, but have refrained. Over the 2 week chemo interval, I seem to tolerate colder and colder beverages, but I haven't been able to tolerate iced while on chemo without the throat thing.

I hope this has been helpful.

Rick

vhtqm1

be careful
i don't have any experience with saliva glands reacting to chemo like you have described. however, be very very careful with anything cold. not only could it feel like razor blades going down your throat but this can also cause closing of the esophagus. not sure if i would take a chance? be careful and good luck.

ed

Sundanceh

Normal Reactions to Treatment
Hi Sue

Nice to meet you. What you are describing are the normal effects from chemo. It sounds like you are doing the Oxaliplatin.

The salivary glands "smarting" during your first few bites does go away after a few days after treatment, as you've discovered. You'll get used to that, but it does really get you good for a few seconds, huh?

As far as cold drinks, it usually between 5-7 days AFTER treatment, before those symptoms subside, then it's ok to try it again and see how it feels to you. Again, this is normal when you're taking Oxy.

What might be able to help you, Rick, and Ed tolerate cold drinks better is to ask your oncologist about MAGNESIUM SULFATE. It is an IV infusion given before and after the Oxy. It does not work for everyone, but it is certainly worth asking about - and worth trying at least one time, to see if it can help any of you.

If it works for you, you can leave Infusion and go straight home and pour yourself a nice cold drink, with ice - and enjoy. It takes away that sensation in your throat and allows for a more normal life during your treatment. I've had several people tell me they tried it and were delighted. If it works, you are in - if it does not, then you have to wait 5-7 days after your treatments. You'll know right away. Just tell your onc that you want to try this.

The Mag will also be of benefit to the neuropathy and ease those symptoms as well - like running your hand under cool water etc.etc. It's a blessing during treatment and gives you some control of your life back.

You guys are all so new to this, so I wanted to pass this along to you. I hope it works for you.

Stay with it:)
-Craig

Jaylo969

Drinking cold
Like Craig said, after 5-7 days you should be good to go with the cold drinks. What I did was drink cool/cold tap water and if that went down fine I'd graduate to colder.Sipping through a straw seemed to help too.

Good luck with your treatments.

-Pat

dianetavegia

The Colgate or was it Crest website
Someone linked us to a toothpaste website last year that talked about how chemo affects us. It said 5 FU affects all the moist areas of our body.... Tongue, throat, gums, salivary glands, vagina, bladder, eyes, colon....

Your glands will also hurt if you're starting to get mouth or throat sores.


How does chemotherapy affect the mouth?
Chemotherapy is the use of drugs to treat cancer. These drugs kill cancer cells, but they may also harm normal cells, including cells in the mouth. Side effects include problems with your teeth and gums; the soft, moist lining of your mouth; and the glands that make saliva (spit).

abrub

Jaw pain on the first few bites
Sue, I got severe jaw pains on the first few bites every time I ate for several days following the infusion - from the Oxaliplatin. I've heard of others having this problem. Sounds like yours may be a variation on this side effect.

It does go away.

suelanders

vhtqm1 said:

be careful
i don't have any experience with saliva glands reacting to chemo like you have described. however, be very very careful with anything cold. not only could it feel like razor blades going down your throat but this can also cause closing of the esophagus. not sure if i would take a chance? be careful and good luck.

ed

Ed
Thank you for the advice, Last thing I want is to hurn myself....better safe then sorry!!!

Sue

khl8

I had the same problem with
I had the same problem with the jaw hurting. As for the cold drinks, I found that about 6 days after the disconect I could tolerate the cold, just in time for another treatment. I had the majority of my chemo in the summer, so a day or two bfore a treatment I would go get ice cream! YUM!
Keep up the great attitude!
Kathy

Daffodil324

khl8 said:

I had the same problem with
I had the same problem with the jaw hurting. As for the cold drinks, I found that about 6 days after the disconect I could tolerate the cold, just in time for another treatment. I had the majority of my chemo in the summer, so a day or two bfore a treatment I would go get ice cream! YUM!
Keep up the great attitude!
Kathy

I had the same symptoms
I recently finished the full twelve treatments of FOLFOX, and after every treatment I had the same salivary gland pain for the first few bites of food. It started with each treatment and tapered off over the next week or so.

One thing I did that seemed to help a little was to take a small sip of orange juice (room temp or warmed up slightly) before starting to eat, and to let the orange juice run around in my mouth. The salivary pain was less with the OJ than with a bite of food, and after starting with the OJ, starting to eat was less painful.

I finished my treatments a month ago and the salivary gland pain is gone completely, so at least it's not a lasting side effect!

elizabethgd

Daffodil324 said:

I had the same symptoms
I recently finished the full twelve treatments of FOLFOX, and after every treatment I had the same salivary gland pain for the first few bites of food. It started with each treatment and tapered off over the next week or so.

One thing I did that seemed to help a little was to take a small sip of orange juice (room temp or warmed up slightly) before starting to eat, and to let the orange juice run around in my mouth. The salivary pain was less with the OJ than with a bite of food, and after starting with the OJ, starting to eat was less painful.

I finished my treatments a month ago and the salivary gland pain is gone completely, so at least it's not a lasting side effect!

Salivary glands
MY dr had not heard of the salivary gland symptom, but I had it. Eventually I had to eliminate the oxy from my treatment for a variety of symptoms. And the salivary symptom disappeared. HOpe things go well for you. Elizabeth

dschreffler

Cold food/drink.
I've not had the salivary gland issue, but I did experience cold sensitivity after the second infusion of Oxaliplatin that lasted 2 week after the last infusion. I could not eat/drink anything colder then room temperature without the feeling of constriction my throat. Others warned me of sharp pain, so I just skipped the cold stuff for the 6 weeks. Even tap water. I did not take anything as I got used to warm milk, tea, juice and just did not want to add another chemical/drug in my body.
The other issue I had, was cold air - my treatment was in March and I lost my voice when I got a blast of cold air in wintery PA. Watch the A/C this time of year! Hands where also sensitive to cold - not as bad as others reported, but definitely felt the cold when getting something from frig/freezer.

I must say I've been eating ice cream and milk shakes every day since the sensitivity when away. Absence makes the heart grow fonder.

claud1951

Yes
Hi Sue,
Yes, I too, had the problem. It lasted only a few seconds but was very sharp pain as soon as I took that first bite. (you must be on Oxil?).

Also, it hurt to cry. Those first tears stung for only a few seconds.
Again, if you are Oxil, you may also notice some muscle spasms, legs, hands.

You may not be able to drink cold things for a while. Try drinking with a straw.

Good luck to you and keep moving forward.

Claudia
Stage 3 Ascending Colon
3 years NED

coloCan

claud1951 said:

Yes
Hi Sue,
Yes, I too, had the problem. It lasted only a few seconds but was very sharp pain as soon as I took that first bite. (you must be on Oxil?).

Also, it hurt to cry. Those first tears stung for only a few seconds.
Again, if you are Oxil, you may also notice some muscle spasms, legs, hands.

You may not be able to drink cold things for a while. Try drinking with a straw.

Good luck to you and keep moving forward.

Claudia
Stage 3 Ascending Colon
3 years NED

High Sue, had the same problem which I attribute to oxi.....
It would get to me after first bite or two, I would pause a few seconds and then continue chewing and sensation would be gone.....Once oxi ended, so did this effect as did the effect coldness would have....Summertime should be no problem with room temperature stuff (In winter, depending on where/how you live, room temp can be too cold and drink/food will need heating).....Hope you get positive results from your treatment.....steve

Happyhar

claud1951 said:

Yes
Hi Sue,
Yes, I too, had the problem. It lasted only a few seconds but was very sharp pain as soon as I took that first bite. (you must be on Oxil?).

Also, it hurt to cry. Those first tears stung for only a few seconds.
Again, if you are Oxil, you may also notice some muscle spasms, legs, hands.

You may not be able to drink cold things for a while. Try drinking with a straw.

Good luck to you and keep moving forward.

Claudia
Stage 3 Ascending Colon
3 years NED

All Of The Above
Man, would I love an ice cold Vodka and Tonic. Ain't no way! I rinse twice a day with Nystatin, prescribed by Onc. I also use room temp water with salt and baking soda disolved in it- 4 or 5 times a day. It seems to help all of the above, even the throat pain. I must have poor tolorence to cold as even tho it is warming up I must keep feet covered. I also have fever blister type sores and the rinses seem to help. God Bless all and hang in there. Frank

JocelynR

Saliva Glands

Dear Sue,

I had my very first infusion of Oxaliplatin Wendesay 6th May and I experienced the very same thing with my saliva glands.  I'm worried that my oncologist had never heard of this side effect and have asked him if he really knows the drug he has prescribed for me.  What can you tell me about the effects of Oxaliplatin long term?

Are you now cured?

Best wishes - Jocelyn

Trubrit

JocelynR said:

Saliva Glands

Dear Sue,

I had my very first infusion of Oxaliplatin Wendesay 6th May and I experienced the very same thing with my saliva glands.  I'm worried that my oncologist had never heard of this side effect and have asked him if he really knows the drug he has prescribed for me.  What can you tell me about the effects of Oxaliplatin long term?

Are you now cured?

Best wishes - Jocelyn

Welcome to the forum, Jocelyn

This is a very old thread, 2010, and several of our members who have posted here have passed, and sadly, I believe Sue was one of them.

It would be wonderful if you started your very own thread, as many of us here are on, or have been on the same chemo cocktail as you are on, and we would love to answer your question. 

I am sorry you have this dreaded disease, but you have found the perfect forum to get answers, support and all the good things that can help you on your trip. 

Sue - Trubrit

JocelynR

Trubrit said:

Welcome to the forum, Jocelyn

This is a very old thread, 2010, and several of our members who have posted here have passed, and sadly, I believe Sue was one of them.

It would be wonderful if you started your very own thread, as many of us here are on, or have been on the same chemo cocktail as you are on, and we would love to answer your question. 

I am sorry you have this dreaded disease, but you have found the perfect forum to get answers, support and all the good things that can help you on your trip. 

Sue - Trubrit

Oxaliplatin and Capecitabine - Help Please

Dear Sue

I am so sorry to hear that several of the members who have posted on here, including Sue have passed. It makes me wonder if I will be following them and how much time Ihave left before I do?  When did Sue pass away? Was it the cancer that killed her and the others?

I am spending much of my time working out what I should write into my will as I don't have one at the moment and my dogs and my permanent resident hedgehogs that I have rescued that can't be released are my priorities. I need to find them new homes if something should happen to me. I'm working on what I have been told as the worst case scenario that I maybe have 2 years left.

Every day I wake up thinking of cancer and chemotherapy and the last thing on my mind when I go to bed at night is exactly the same thing.  I rarely dream anymore, just wake up in the middle of the night frightened instead.  If it wasn't for my animals I'd probably jump off a bridge because this is no quality of life for me. always worrying the cancer may come back and the side effects that the chemo might bring. I am totally reliant only on myself, I have nobody to turn to to lean on for day to day life.  If I can't fully function I am going to be in serious trouble both in respect of my dependent animals and my financial security, I cannot stop working and lucky that I can so so from home.

I can't feel positive about the chemotherapy because I keep facing so many negative attitudes from my surgeon and oncologist, I feel I am on my own with this thing.  My surgeon said to me; "Do you realise that chemotherapy can kill you?, Do you realise that chemotherapy only helps 12% of patients?  Do you realise that the chemotherapy you are on has the worst side effects?  In 10-20 maybe 50 years from now, they will be telling us that chemotherapy should not be given to patients like you" My oncologist seems to like to point out that he knows about the side effects and when they present themselves. I seemed to be escaping the ones from the Capecitiabine and told him so on day 9, he then told me they normally present themselves on day 12 - GREAT!!! :-(  - I then spent 3 days worrying about what might happen on the Sunday!!!!  When I wrote a letter to the oncologist about what I had heard about the Genome Project and asked if and how that could help me, I received a 4 line dismissive reply.  I wish he could put himself into a cancer patients shoes for just five minutes and become a little more empathic and human, he seems to be as cold as ice, to him I feel I am a slab of meat on a table that may further his research, rather than a human being with fears and feelings.

I was daignosed with colon cancer 17th February, they successfully removed that part of the colon in March, but the cancer cells may have entered my blood stream and my lymph system so I started an 8 x 3 week cylce of chemo 6th May.

My oncologist is supposedly one of the top 3 here in UK but he had never heard of painful saliva glands from Oxaliplatin!!!  When I saw him for the first appointment I took with me a hair lotion I had been using, recommended by my hairdresser (Mediceuticals) and asked if it would be OK to continue using it (it thickens the hair and I have seen it work for my hairdresser for myself).  He had a quick look at it, there was no way he could have read the active ingredients in the time he took to read it and told me there was no problem with it.  However, after only 3 days into chemotherapy the lotion all of a sudden turned my scalp bright red and very sore, I had to stop using it.  So, this top guy doesn't seem to understand what he is prescribing me and I am very worried about any long term effects this drug may have on me.

Can anyone help?

How do I start my own thread Sue please?

Best wishes - Jocelyn

 

 

Kindest regards - Jocelyn

 

 

Trubrit

JocelynR said:

Oxaliplatin and Capecitabine - Help Please

Dear Sue

I am so sorry to hear that several of the members who have posted on here, including Sue have passed. It makes me wonder if I will be following them and how much time Ihave left before I do?  When did Sue pass away? Was it the cancer that killed her and the others?

I am spending much of my time working out what I should write into my will as I don't have one at the moment and my dogs and my permanent resident hedgehogs that I have rescued that can't be released are my priorities. I need to find them new homes if something should happen to me. I'm working on what I have been told as the worst case scenario that I maybe have 2 years left.

Every day I wake up thinking of cancer and chemotherapy and the last thing on my mind when I go to bed at night is exactly the same thing.  I rarely dream anymore, just wake up in the middle of the night frightened instead.  If it wasn't for my animals I'd probably jump off a bridge because this is no quality of life for me. always worrying the cancer may come back and the side effects that the chemo might bring. I am totally reliant only on myself, I have nobody to turn to to lean on for day to day life.  If I can't fully function I am going to be in serious trouble both in respect of my dependent animals and my financial security, I cannot stop working and lucky that I can so so from home.

I can't feel positive about the chemotherapy because I keep facing so many negative attitudes from my surgeon and oncologist, I feel I am on my own with this thing.  My surgeon said to me; "Do you realise that chemotherapy can kill you?, Do you realise that chemotherapy only helps 12% of patients?  Do you realise that the chemotherapy you are on has the worst side effects?  In 10-20 maybe 50 years from now, they will be telling us that chemotherapy should not be given to patients like you" My oncologist seems to like to point out that he knows about the side effects and when they present themselves. I seemed to be escaping the ones from the Capecitiabine and told him so on day 9, he then told me they normally present themselves on day 12 - GREAT!!! :-(  - I then spent 3 days worrying about what might happen on the Sunday!!!!  When I wrote a letter to the oncologist about what I had heard about the Genome Project and asked if and how that could help me, I received a 4 line dismissive reply.  I wish he could put himself into a cancer patients shoes for just five minutes and become a little more empathic and human, he seems to be as cold as ice, to him I feel I am a slab of meat on a table that may further his research, rather than a human being with fears and feelings.

I was daignosed with colon cancer 17th February, they successfully removed that part of the colon in March, but the cancer cells may have entered my blood stream and my lymph system so I started an 8 x 3 week cylce of chemo 6th May.

My oncologist is supposedly one of the top 3 here in UK but he had never heard of painful saliva glands from Oxaliplatin!!!  When I saw him for the first appointment I took with me a hair lotion I had been using, recommended by my hairdresser (Mediceuticals) and asked if it would be OK to continue using it (it thickens the hair and I have seen it work for my hairdresser for myself).  He had a quick look at it, there was no way he could have read the active ingredients in the time he took to read it and told me there was no problem with it.  However, after only 3 days into chemotherapy the lotion all of a sudden turned my scalp bright red and very sore, I had to stop using it.  So, this top guy doesn't seem to understand what he is prescribing me and I am very worried about any long term effects this drug may have on me.

Can anyone help?

How do I start my own thread Sue please?

Best wishes - Jocelyn

 

 

Kindest regards - Jocelyn

 

 

Personal message

I have sent you a personal message to help you start your own thread. Keep an eye on your email box for the notification, or you can access your personal Message box on your profile page. 

Sue - Trubrit

JocelynR

LivinginNH said:

Same symptoms for me
Brief update on my status: colon resection surgery, 4 rounds of chemo, liver resection surgery, and I just had round 2 of 8 of post-surgery chemo. I, like you, would describe the side effects as relatively minor. I have had exactly the same symptom you described with the glands. It is at its worst on the day I go for treatment, and subsides gradually over the 2 weeks between treatments, but doesn't really go away. During the surgery break, it went away completely after week 3 beyond the last chemo treatment, so, in my case anyway, there was nothing lasting. When I returned to chemo treatments, however, it came right back. My oncologist also had not heard of this side effect. The chemo has been working very well for me, so, maybe it is a sign that the chemo is working great :-)

As for the cold drinks, I too am craving an ice cold drink, but have refrained. Over the 2 week chemo interval, I seem to tolerate colder and colder beverages, but I haven't been able to tolerate iced while on chemo without the throat thing.

I hope this has been helpful.

Rick

Saliva Glands

Dear Rick

I had my first chemo, round one of eight on 6th May and I too suffered with the saliva glands problem.  I am due my second infusion of Oxaliplatin this coming Wednesday 27th May, 2015 and dreading it.  Did yours leave any last effects?

 

How are you now?

 

Best weishes Jocelyn

 

JocelynR

Trubrit said:

Personal message

I have sent you a personal message to help you start your own thread. Keep an eye on your email box for the notification, or you can access your personal Message box on your profile page. 

Sue - Trubrit

Personal Message

Dear Sue

I can't find any message from you?  I've looked in "In Box" and "About Me" and see nothing, am I being stupid?

I am not very good with the internet and websites

I might just give up as I found it very depressing that the people that were interacting on this site in 2010 have passed, so the chemo and treatments didn't work for them presumably. It is not encouraging me to be positive about mine, since I'm already in very negative state as it is.

Kindest regards - Jocelyn