HELP - 2 Years and still sick!!

sandnsun

I have just joined this and have read through the past messages. I sit here with tears now cause I thought I was going crazy. Everyone is poo-pooing me on these symptoms and I KNOW THEY ARE REAL!!!. I was dx 10/00 with Stage 3 NHL. I had chemo for 6 months and my world crashed. I mean, who's doesn't?? I have never regained my energy to what is was prior. I fight fatigue, nausea, hot flashes and sweats day and night. The Med Dr's tell me I'm fine (I have testing every 3 months)and they send me to the shrink. They said I was depressed and tried me on 7 different antidepressents (all had intorable side effects) and now have shooed me back to the Med Dr's. I want to scream!!! I know it takes time, but 2 years???? I realize life is NOT the same now but to have a semi-normal day would be nice. I fight to get up for work, shower sitting down cause I can't stand and "fake it" at work by spending minutes in the bathroom with cold paper towels pressed to my face. The nausea gets so bad sometimes that I have to run in there and dry heave so as not to freak out my employer. ANY ADVICE???? PLEASE!

kallie

Are you taking any pills for the nausea? I find Zofran works well. I don't have the effects you do, but I am still in treatment.
Don't let anyone tell you how you feel only you know..K

nystretch

I also have just joined. Four years ago my sister was diagnosed with terminal lung cancer. She went through chemo, radiation, surgery and some experimental treatments. In September she will be cancer free for 3 years but her life is also far from normal. At times she has such severe pain in her head that she can't stand it. She has bounced from MD's to Psychiatrists with still no results. Hang in there! No one knows your body like you do. Even though the doc's might not find anything let them know that your symptoms are very real. Just because they can't find a cause, doesn't mean it isn't there. A strong support system of friends and family is also important. My sister has started to look into alternative forms of medicine to help. This might also be an option. It doesn't hurt to look. Good luck

frantik

I really feel for you and I am so sorry that you are experiencing such intense problems. However, as someone who had cancer in 1972 at 3 years old I do not feel at all surprised. I am also not surprised that you are having difficulties with the medical establishment. I would like to tell you that there is a magic date that all of your problems will resolve, but that has not been my experience. Certainly there are many people for whom long-term health problems after cancer treatments are not an issue--but for many of us late effects from cancer treatments are part of our everyday lives. Many in the medical establishment know little or nothing about this. In fact, research and studies are really just starting to come out and I have hopes that our needs will be better recognized in the very near future.

In the meantime, there are resources for you. I would recommend seeking care from a provider that understands our issues. You can find a list of follow-up clinics, as well as a book on long term effects of treatments here:
http://www.patientcenters.com/survivors/

In addition, there is a great group of survivors that you can find here--they have much advice and experience to share:
http://listserv.acor.org/archives/lt-survivors.html

Take care!

jerzfam

I'm so sorry to hear about your after affects being ongoing! I just finished 9 months of chemo (each treatment was 4 days (96 hour drips) every 3 weeks) The treatments were ghastly and effects were and still are horrible (as you well know). My oncologist says that some of these symptoms may never go away. (numbness in fingers and feet, lack of energy to be specific) That really frustrated me to hear. But the nausea I expected to go away in a few months. Yikes! Two years sounds horrible! Have you tried Ativan at all? It works best for me. Also, Zofran is good, too.
I also try Benadryl at night, since it makes me sleepy. I always wake up in hot/cold sweats. That makes me crazy, but I was hoping that would go away soon as well. I also had a hysterectomy so I take Premarin daily so I'm hoping that will help too. Good luck with your symptoms. You are in my prayers-Cathy

Unknown

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homeschoolmom

jerzfam said:

I'm so sorry to hear about your after affects being ongoing! I just finished 9 months of chemo (each treatment was 4 days (96 hour drips) every 3 weeks) The treatments were ghastly and effects were and still are horrible (as you well know). My oncologist says that some of these symptoms may never go away. (numbness in fingers and feet, lack of energy to be specific) That really frustrated me to hear. But the nausea I expected to go away in a few months. Yikes! Two years sounds horrible! Have you tried Ativan at all? It works best for me. Also, Zofran is good, too.
I also try Benadryl at night, since it makes me sleepy. I always wake up in hot/cold sweats. That makes me crazy, but I was hoping that would go away soon as well. I also had a hysterectomy so I take Premarin daily so I'm hoping that will help too. Good luck with your symptoms. You are in my prayers-Cathy

I'm currently undergoing the same kind of chemo treatment (just love lugging those pumps everywhere with me for four days). I survived the first week without too much trouble, but the fatigue is maddening. I'm totally unaccustomed to the nausea and dizziness coming and going.