kristin
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I am SOOOOOOOOOOOOO happy for you!
–The “other” Kristin (yes, I got called KRIS-TIN LI-SA when I was in big big trouble as a kid!!)
My nutrition nurse has had me taking CO-Q10 for the last two years (100 mg, twice a day). My tumor hasn’t disappeared, but I’m feeling very well. I have to say I also take about 20 other supplements, including IP-6, so it’s hard to know what actually has the most effect.
For itching–when I had it really bad, I took a bottle of Intensive Care lotion, dumped out about 1/3 of it, and added in a lot of peppermint essential oil (maybe 20 drops.) This was recommended to me by an aromatherapist and it did help. You need the pure essential oil that’s used for aromatherapy– they have it at health food stores.
Hope this helps!
Kristin
I’d like to second what Lainy said about acupuncture. I haven’t used it for pain, but I’ve had weekly acupuncture treatments for my immune system for the last two years, and it’s AMAZINGLY relaxing. I usually drop right off to sleep on the table with the needles in and feel like I’m floating in a cloud! Definitely worth trying.
I’m SO glad to hear you can eat better– good food is one of the keys!!
Kristin
Bike riding sounds like a great idea– exercise plus scenery!
I admit this is TOTALLY unscientific, but I have this idea that exercise makes my blood flow more strongly, and keeps “bad stuff” out of my blood vessels. I told that to my acupuncture doctor (who is an MD) and she said that from a western-medicine point of view, that doesn’t really hold much water, but from a Chinese-medicine point of view, that’s quite true.
So I would say, go for it! And have fun!
Kristin
Hi Lisa,
My second surgery (2 years ago this month) was also broken off because the recurrence was stuck on the IVC.
I’m still alive and kicking and doing very well– after work today I’m going to do my usual 6-mile run. So, it’s a real bummer that they couldn’t operate on us because of the location, but I don’t think that having the tumor there necessarily is dangerous.
If you’re really concerned about it, you should ask your doctor– but I don’t think it helps us to worry a lot about things that might maybe happen in the future, if there’s not a thing we can do about it.
Hope this helps! By the way, I love your blog!
Kristin
Sorry to say, but I was very relieved to hear that you couldn’t pass along our posts without specific permission. I have to stay anonymous because my work as a freelance writer would be torpedoed if some of my editors had any idea I was living with incurable cancer. Sad but true.
Jeff, you’re amazing! I’m going through a smaller-scale version of this right now with my elderly parents (Dad with dementia and uncontrolled diabetes, Mom callous and grudging) and it can be SO painful, and so difficult to stand up to a parent in a firm but loving way. It’s tremendous how you’re working through all these difficult experiences in your past.
I have to say, one of the only good things about having this disease is it gives us a powerful incentive to sort through all our burdens from the past and straighten out our relationships, since time is so precious to us.
Rock on!
Kristin
I’m sorry to hear they couldn’t do something immediate about the pain, but HOORAY about your scans!
And really I think having a big life-goal, like starting a family, helps survivors to keep our eyes on the long term. You rock!
Kristin (are you also a Kristin? or a Kristen or Kristina, maybe?)
Hai Minh,
My original tumor was about 4 cm, they removed it completely with clean margins and no lymph nodes were involved. (They also took out half of my liver.) So, that was the best-case scenario. The surgery was really hard on me, so afterwards I was VERY happy to hear that no further treatment was recommended. I feel now I should have asked more questions. I also think that the radiation I had after my recurrence was a very effective treatment, and the side effects weren’t too bad (fatigue and heartburn.)
To correct what you said, I haven’t had chemo yet (except for Xeloda) so I don’t know how hard that will be. Keep in mind that patients always have to wait at least a month after surgery to have chemo or radiation, because both of those interfere with the healing from the surgery.
And Kris, thanks so much for the kind words. YOU are a big inspiration to me! I was lurking on this board for months before I started posting, and your grit and determination and humor always give me encouragement!
I had surgery for a Klatskin tumor in Feb 04 (no radiation or chemo afterwards) and a recurrence in August 06, and was then treated with radiation and Xeloda. That kept the tumor stable until July 08, but now it has started growing again and I’m going to start chemo in the next few weeks. I’m doing well and still feel ridiculously healthy– no symptoms at all– and I ran six miles on Friday.
Every case of this disease is so different. You really can’t go by statistics, I feel.
The best of luck to both of you!
Kristin
As for the tiredness, after seven weeks of radiation I felt better after two weeks, and back to normal after about a month. The funny taste disappeared after a few days and the heartburn immediately after they stopped cooking my stomach daily (gee, I can’t imagine why!!)
It was all TOTALLY worth it (for me) and I hope before long Teddy will be saying the same thing.
Kristin
I had seven weeks of radiation, felt very tired and had absolutely diabolical heartburn at times. I carried a bottle of extra-strength mint flavor Mylanta with me everywhere and took it many times a day, and it really did soothe my poor stomach.
It was all totally worthwhile! It shrank both tumors and they stayed stable for 19 months!
And as for “no side effects”, that’s BS. (‘scuse me…) Everything I ate tasted burnt! And one of my friends who had radiation for breast cancer said it gave her mouth a metallic taste. For me, eating a really sour pickle seemed to “reboot” my mouth so I could taste other things. Might be worth a try??
Hi Sheryl, I was also diagnosed when relatively young (46) and am now in shouting distance of my 51st birthday. I think being younger puts you in better shape to survive this disease– at least that’s what I tell myself! I understand completely what you mean about not trusting your body, but with time, it gets easier. I think it helps a lot to do whatever kind of exercise you can manage, to make yourself as strong as possible.
And don’t keep your fears to yourself. You really need someone that you can tell EVERYTHING to– if you don’t want to burden a family member, then a friend, a nurse, a clergyperson/ counselor. It will help a LOT.
Wishing you peace, hope, and healing!
Kristin
