Symptoms with no change in tumor size.....??

[windy]

Hi,

I have a question for the post radiation patients.  I have had a pretty rough time since my GK in Aug.  I certainly don't blame it all on the radiation because I have a complicated medical history.  Nonetheless, I have had my host of post radiation problems.  The symptoms are better, but there are times when they rear their ugly head again.  Today was one of them.  I woke up with pretty severe ear pain again.  This time it was accompanied by a right sided feeling of throat closing and my tongue was also affected.  The discomfort also goes down the right side of my neck.  I am used to the ear and neck pain, but have never had the throat and tongue issue.  All symptoms are on the right AN side when they occur.

I decided to go the ER this time.  I was particularly worried since it was hard to swallow and there was also a wierd sensation in my tongue.  I am almost 6 months out and have not had a MRI since my GK treatment.  I was scheduled for my 6 mo. MRI next week, but thought it would be very necessary to be able to swallow!!  I did not think I could wait 5 days.  I already take Advil daily, so that was not going to help, it seemed.  When they ran the MRI at the ER today, the reort stated the tumor had the exact same measuresments as pre GK.  By the way, I took a copy of my old MRI that was from pre GK.  I thought they would need a comparison.  Also odd is the fact that when I had GK in Pittsburgh, the measurements did not match either of the pre GK or 6 month post GK by several mm's.  Also, the MRI machine was not working correctly the day I had my GK treatment.  I was taken out and it was restarted again.  They stated the machine was tilting as it should, if I remember correctly.  Now, I have two MRI's with exact measurements and one that does not match the other two.  The one that does not match is the one they used to deliver the radiation. 

My question is do you think it is possible to have symptomology without having tumor swelling?  I was shocked when they told me the tumor was completely unchanged.  I thought from the way I have felt it would be tremendously larger! Ha!  Also, if the tumor is completely unchanged, do you think it would be cause for alarm in regard to the radiation not working?  I suppose the fact that the MRI machine was not working correctly has haunted me since my treatment, as it was there to map out my radiation treatment plan!   

I would appreciate any input you can give me.  Thank you to all who can give me some insight to this issue!   

[ppearl214]

Hey windy,

I'm so sorry you are having a difficult time...

You may want to "eavesdrop" on this one:

http://anausa.org/forum/index.php?topic=8627.msg94035#msg94035


sounds like you and Carol and others can compare notes...... just fyi.

Please hang in there.
Phyl

[windy]

I feel for Carol.  I hope she gets some relief soon.  Living with problems for years would be very wearing!  I am not having panic attacks and am not ready for Valium, but I did have a doctor that does not recognize post radiation problems. 

[sgerrard]

Even if the tumor hasn't changed, you can still have inflammation in the surrounding tissue, a reaction to the presence of the dying tumor. So I think it is quite common to have symptoms after radiation treatment without visible signs of swelling or growth. It is usually within the first 6-18 months, and calms down eventually. If the tumor is not growing, then the radiation treatment has accomplished goal #1.

Hope you feel better soon. Maybe some Ibuprofen instead of Advil?

Steve

[mk]

Steve is right about the inflammation. There is also the possibility of "internal" or "clinical" swelling, which is not visible on the MRI  - in these cases a short course of steroids might be of more help than plain Advil (which by the way IS ibuprophen).

It seems to me that these symptoms point to some nerve aggregation, like the trigeminal (causing the pain) and swallowing nerves. They might have taken a hit from the radiation and causing these problems.

On the issue of the MRI, I wouldn't worry to much. I have had MRIs on 4 different machines, with slighlty different results each time. The only measurements that agreed exactly where the ones taken on the same machine. When taking an MRI scan to plan for the treatment, they look specifically at imaging more slices etc., so these measurements can be considered as the most accurate.

I hope you will find relief from your symptoms soon. Let us know how it goes.

Marianna

[sgerrard]

more help than plain Advil (which by the way IS ibuprophen).

Oh my, I had always thought it was acetaminophen, like Tylenol. That's what I get for always buying the generic brands at Walgreens. Now I know!

Steve

[Jim Scott]

Steve:

Ibuprofen is a NSAID (nonsteroidal anti-inflammatory drug) marketed under many names (and brands), including Advil, Genpril, IBU-200, Midol, Motrin, Nuprin.  I buy the generic, too, at Wal-Mart.

[Carol]

Hey Windy. it's Carol.

I didn't post a fourth of what GK did to me. One thing that is similar is that all my docs kept saying there should be no side effects. Here's a little more about what happened. I don't want to scare you, but I sure wish someone had told me some of this. At the very least I might not have put myself through so much.

First, I started having digestive issues. I was scoped up and down, small intestines and even a swallow test. All tests and samples came back negative, so I was told IBS. That's what they call it when they can't find anything.

Then, when I would be in a confined space, at church, in a car with strangers, shopping, basically anywhere outside my home, I would have a fainting sensation with the strange desire to just run! I didn't realize that it was a panic attack. Followed by difficulty breathing.

Also, extreme fatigue. I didn't have the energy to hardly walk!

I literally lay in my kitchen floor on a lounge chair pad from outside, near the entrance to the closest bathroom and I couldn't go more than about four feet or I couldn't make it (if you get my drift here).

This lasted about 6 months!!!

One day I decided that it wasn't going to go away and no one was going to help me, so I got busy on the net and found a doctor (actually chiropractor in Cincinnati that specializes in IBS) and I followed his plan to the letter! Supplements, diet changes, all of it. Then my family doctor gave me low dose Valium for the panic and anxiety. (I am not nor have I ever been an addictive personality) My long history with my doctor knew that so the Valium comes like candy. When I am home, I don't take any. Church is a 3 Valium (6 mg spaced out) trip and so on. I try not to take it, but I can't sit in a room with other people if I don't.

Dr. Field says that all of this is symptomatic of someone with chronic pain and IBS is exaserbated (sp) by me trying to balance all day long. The panic and anxiety is a side effect of GK.

If you've read any of my posts and know now that surgery is not reccommended, I plan to attack with the following:

Tomorrow I am starting counseling to try to get some coping skills which I have never needed before.
Tuesday I am going to my family doctor for anti-depressants which I fought to stay off of, but I am now giving into.
I will be renewing the Valium and taking without guilt.
I am going to start an appropriate exercise program. (I am blessed to never have had weight issues, but I need the cardio workto help with fatigue.)
I plan to look for a nutritionist to further help me with the IBS.

That's all I have so far, but I don't plan to lay down and as my favorite charactor of all time says,

"Tomorrow is another day!"

Carol
Let me hear how you do.

[sgerrard]

Hi Carol,

I want to comment on the Valium and anti-depressants. We have had discussions before about depression and pharmaceutical treatments for it; one I remember is here: http://anausa.org/forum/index.php?topic=7108.0. 

The upshot of it is that when your brain has to deal with an AN, recovery from treatment, and/or balance issues, it needs its resources for those tasks. If you have depression or fatigue or stress, it makes it that much harder for the brain to cope and adjust. Sometimes it makes sense to use medications from a doctor to give your brain a better chance. You should not feel the least bit guilty about doing so. Once you have been able to adjust better, the need for the medication will fade away.

I also have a friend who went through some form of IBS. I think the same thing applies; reducing stress and fatigue will help it heal up. It has healed up for her over the course of a year, with attention to diet and stress, and some steroid use in the early stages. There is every reason to be optimistic that it will for you too.

Best wishes for a great outcome, even if it takes a while.

Steve

[Carol]

Thanks, Steve. I didn't mean to hijack Windy, but this is really important and probably to more than we know. I am optimistic and trying to be even more so. Now, can I have a hat? LOL!

Carol

[Sheryl]

Hey Steve - Love the new picture and the hat - almost didn't recognize you.  I may need the hat here in S.W. Florida - it is downright cold but as soon as I complain to my northern friends (Hiya Phyl), they don't want to hear about chilly Florida temperatures!!  Oh well, at least the Red Sox will be here soon.

Now back to our regularly scheduled topic.
Sheryl

[windy]

Carol, you should post the symptoms you have experienced!  This board is for sharing, both the good and the bad.  If only the good is posted, then some people make get an overly distorted image of radiation thinking everything is going to be symptom free, post radiation.  If someone has a good experience, that should be posted, as well.  I am glad you posted what you have been going through.  When others are not faring well, post radiation, they know they are not alone!  Additionally, you are to be applauded for taking care of yourself through medication and other resources.  You are going to be better for doing so.  Also, one never knows what medication or resources one will use in their own future to better their life.  Only the future can tell.  At least, I speak for myself in that regard!

Steve, I also did not recognize you at first with your new "knitted" blue hat!  Is it okay to say a man looks "adorable" in his hat?  Well, that is what came to my female mind, without taking any of your masculinity from you!  I really do love your new picture. 

Also, thank you to all for your insight on the tumor and the fact that the size has not changed.  I will try to keep in mind what all of you has said!  Also, Marianna, I think you are on target about the nerves being irritated.  That was what I was told at the ER Friday.  Also, the doctor said the symptoms are often transient in nature and they are for me.

Thank you everyone!  I appreciate your help.

Windy