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Would like some input: Now that I'm NED, strange problems cropping up

tommycat's picture
Posts: 790
Joined: Aug 2011

This month I am two years NED. Dx June 2009, stage 3, 30 localized radiations, 50 rounds of chemo and a number of surgeries. Ilestomy reversal 10/10
Went for a scheduled followup C/T last Friday and had my first ever allergic reaction to the contrast dye. Got hives and felt itchy all over and was given an IV of benydryl and held for observation. On the list of "If you are allergic to this dye...." shrimp, latex and kiwi may be bothersome.
Last night we had Thai take-out and I had green curry tofu on jasmine rice, one of my favorites. Within minutes of eating it I felt sweaty and clammy, my heart rate zoomed, then my tongue started to swell and my throat got tight.
Called 911, and bam!--they were here, stuck a needle in my arm and gave me benydryl and some albuterol in a mask. Taken to the hospital by ambulance (never been in an ambulance before) where more IV drugs were given (steroids, lorezapam, zofran and more benydryl. Stayed there for observation, then came home to my own sweet bed. We all know how much rest you get in a hospital :)
As luck favored it, the EMT who sat with me on the ambulance ride, is a testicular cancer survivor of 7 years and was in his 40s, like me. He shared that since post-chemo his body does things it never did before; it reacts to some things like they are new and vice versa.
Enjoyed his 'compadre' company very much but found this info slightly depressing, meaning not knowing what is going to whack me on the back of my head and unpleasantly surprise me.
Life has it's ups and downs, that is clear to me. But to go through the horrifying treatments and surgeries, to find that THAT is not what gets you, but perhaps a green curry dish, makes me mad, sad and anxious.
Your friend in San Diego

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Well, TC

One just never knows. I've had cancer 3x and knocked it back 3x over 7 years - 55 tx of radiation - over 51x of chemo - 3 stereotactic rad treaments - 4 major surgeries + many other 'procedures.'

Lately, I've been getting hit just about every day with vertigo from Meneire's Disease of the inner ear, that came on me 7-years ago when I was diagnosed and got out of the hospital.

The spells come every other year for months on end and most of them are completely debilitating. The other day, I had to nearly be carried out of work and driven home by my boss and a co-worker. I was totally incapacitated as it was a bad spell - could not walk or sit up or open my eyes. It went for 10 hours but I've had them up to 28 hours before.

And anything can cause it. I can take a step - I can reach for something - I can be typing at work - or just reading an email and things just go gaga and it's all over for the day.

So, there is a 'fear' that is not cancer related. The fear of leaving the safety of your own home and not knowing how you are going to get home that evening. The fear of not being able to work and maybe losing your job due to this and all the cancer time I missed fighting.

There is no cure for this disease - eventually I might go deaf and the spells would end when the nerve endings in the ear die. If I don't die from cancer, I've got that to embrace.

And there may be more things.

When we're young, it's all out ahead of us with clear sailing ahead. After 40, the body begins to break down and we begin to understand the illnesses that we saw in other people when we're young that are now happening to us - even though we never thought they would.

I just turned 50, so who knows what else there will be to expect. I just finished up my last 12 months with my latest fight and back to a 'watch and wait' state. I only got 18 months clear as it was in my fight and that was 7-years ago when I just first started out.

Since I went to stage 4 four years ago, I could barely get a CT scan that did not have something alarming on it - just got my first good one after we wrapped up treatment a little over 4-months ago.

I fully expect my 4th recurrence to come for me at some point in the distant future, but I just try and keep going, if it's there, it's already there and probably never left.

It just means that my watch and wait status indicates there are no discernible cancer cells that can currently be detected by any methodology that the medical community employs today.

I've never been in an ambulance yet either - something about the $1500 ride keeps me off that buggy, but it could happen one day and I might not get the say in the matter. I'm glad that worked out for you, what a blessing to have that available in a situation as precarious as yours was.

Allergic reactions are a serious business and it's scary but interesting how your body has apparently changed from the way you used to handle things. I'm glad you're okay and it looks like 'green curry' is out of your life now unless you have an Epi-pen handy, LOL:)

Glad you are okay and congratulations on being 2 years clear. I would love to realize a dream like that myself.

As you've discovered the older we get the less GUARANTEES we find. Life is a crap-shoot and all one can do is roll the dice and be prepared to move in one direction or another when we're called on.

Well, you asked for thoughts and probably got more than you bargained for with me:)

I'll get out of here and let you get back to it. Continued health to you and all the best.


tommycat's picture
Posts: 790
Joined: Aug 2011

Thanks for your feedback Craig...sometimes I don't know what to think.
Btw, my sister had (note the past tense) Menuire's syndrome too....at least that's what the diagnosis eventually said. She would use valium and/or benydryl and go directly to bed for the rest of the day--not easy when you are an elementary teacher.
Anyway, one day it just went away....JUST WENT AWAY. As strangely as it came on, it as strangely left.
I hope yours does too!
Your friend in California~

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Just about to leave.....I'm curious as to how long she had it and if it was her first and only time getting it.

I ask because Meneire's does come and attack and then mysteriously leaves ONLY to return once more and wreak havoc. I've had it 3 times and it went away twice, I'm still waiting for it to leave for the 3rd time.

It usually continues to strike every other year, that's been the pattern for me. It will continue to come at intervals that it decides on its own. It removes hearing with each attack until the nerve dies in the ear and then the attacks stop.

So, if sis had it and it went away, it might come again another day - if it's Meneire's. All of the documentation I've read said - no cure. Although they can try and treat it.

I've heard of valium being used, but I can't do that and work. I'm considering some sort of ear patch that releases continually. Gonna' try that and see how that goes. Drammamime has not been all that effective.

Interesting - we can swap notes:)

Your friend in Texas

tanstaafl's picture
Posts: 1302
Joined: Oct 2010

Gut damage is common as grass. Glutamine and/or cabbage juice are natural nutrient sources to restore epithelial cells lining the GI.

Chemo depletes various essential nutrients in the body. A lot of allergic reactions or toxicity buildup may arise from vitamin C depletion, glutathione depletion, selenium depletion, and organic sulfur depletion (e.g. MSM or less sweet onions for sulfate de-tox in the liver). Glutathione is typically regenerated with N-acetylcysteine, a precursor. High potency B complexes are popular with many e.g. B-50 or B-100.
Liver chemistry in particular may be so deranged as to require even more types of nutrition; similar to what I mentioned earlier to donnare.

Likewise bone and tooth issues may arise from magnesium, vitamins D3, K2 and C depletion as well as calcium.

thingy45's picture
Posts: 633
Joined: Apr 2011

Menieres and-or Vertigo.
I have this now for over 7 years and indeed it comes and goes. Often months go by and no problems.
Lately I have been stricken with it and the most impossible moments, like grocery shopping, taking something above my head of s shelves and then looking down in the buggy ... wham... I am on the floor. Very debilitating indeed, As said earlier I am taking SERQ 8 mg twice a day when a attack does occur and that really helps. also gravel helps and Valium of course.
I have spend many days in bed or in a chair to afraid to move, lying down seems to make it worse.
So I know how you suffer Craig. I call it I am in Lala land not knowing what is floor or ceiling.
Good luck with it,

ron50's picture
Posts: 1729
Joined: Nov 2001

I am a 13,nearly 14 year survivor of st3c.I could fill a book with things I can no longer eat ,breath ,drink or wear. My anti-perspirant is currently burning up all sorts of tender areas. Think I will have to revert to baby powder. I take two anti-histamines a day and my immune system attacks me constantly. Kidneys,lungs,nerves ect ect.It has been a real eye opener ,life after cancer. Hope your problems are not so bad,Ron.

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