I finished treatment July 16 2008. After that I started to feel better little by little. Everything seemed to be right on track. But suddenly, I began to decline. I got weaker and felt dizzy at times. I also noticed a week ago that I'm running a low grade fever (99.7). And it just keeps getting worse. Today I had to hire a caregiver to come in and cook for me. This burns up all my income and now I'll have to pay doctor bills out of savings. And because I seem to just be getting worse, I'm pretty scared about where I'll end up.

The oncologist says it is impossible for this to be a result of treatment. He didn't even suggest I come in to see him. He said to eat more calories to get stronger. So I'm doing that, but I'm still not satisfied that this is it.

Any suggestions or ideas?

BTW, I live in Los Angeles. If anyone knows of something or someone here that can help me, please let me know.

Andrew:

Im sorry to hear you arent doing the best right now. A fever even a low grade one can make you feel pretty crappy. At this point you arent that far out of tx where fatigue is still to be expected. Sometimes you take one step forward and two or three back. Fatigue can linger for a long time. It could be anemia, have you had your bloodwork done recently? I ended up with anemia and it made me feel awful.

Be aware of your calorie and water intakes. Should be 48 oz water and 2000-3000 calories per day, with 3000 the best. Are you drinking ensure, carnation vhc or boost? If not that would be a great idea.

Its not a bad idea to see another doctor too. If you are like most of us, then Im sure you have several on board. I used to have some difficulty in deciding which doctor to see for different things that came up. Dont forget about your family doctor, sometimes they are better than the specialists who only look at the small picture for their field. Thats just my opinion, for what its worth. I go to my family doctor who is very good. He was the one who said he thought I had cancer before any tests were done.

Hope you feel better soon.

Andrew,

Having a low grade fever can also mean a infection. I would make an appointment if it does not improve in 2 or 3 days. Yes, keep up the fluids for sure.

Just coming out of treatment your system is not up to normal. You have to be careful and stay away from people that are sick. Your resistant needs time to get stronger.

Take care, Diane

Also has anyone checked your TSH levels as your thyroid may be crapping out. A lot of us are now on a daily thyroid pill as a result of the radiation. Mine didn't crap out until 4 months post Tx.

Hi Andrew,

You've received some good advice here. Everything that David and the others have said is right on.
We've had some issues with my Hubby's health too that has been better addressed by his PCP. This sounds like a good time to go to your PCP and get a good physical checkup with lab work. It is not unusual to have periods of weakness and draggy days. It is still early in your recovery from treatment and doing so well directly afterwards prabably makes this seem even more concerning. I completly relate to your concern it's hard to not think the worse when things like this happen.
My best wishes are with you. And I'm sorry to hear your feeling sick. Just remember! This too you WILL overcome. Please let us know how things go with your PCP. You'll be in my thoghts.

Hi Andrew,
It could very well be a virus. I live in Michigan and the viruses are running rampant since the kids have gone back to school. I had a low grade fever for 6 days and generally felt like crap. I had other flu-like symptoms ie aches, congestion, sore throat. Went to the dr. and he said it sounded like a viral fever. Since I'm not a fan of antibiotics, I thought I'd ride it out, and I think I'm turning the corner. I know you just finished treatment not too long ago. I'd be a little nervous too, but it could very well just be a virus since it's that time of year. Hope you feel better soon.

Kelley

Thanks all for your replies. I'm trying to follow up on all suggestions. I hope something begins to help soon. I'm worse than ever.

If any of you are so inclined, would you please pray for me.

Andrew

If you are feeling worse, go to your doctor right away. As always, not sure which one but think chemo doc would be best choice or your family doc. Dont delay any longer, you may have an infection and need to be seen. Remember, its your health and those doctors basically work for you. Dont be afraid to stand up to those appointment setters and tell them you are very ill and its imperative you see the doctor, dont take no for an answer. You dont want to end up in the hospital. Maybe try calling the place you were treated and ask for a visiting nurse if thats available. My hospital sent one for me. I really hope you get this taken care of so you can start to heal and feel better.

Really sounds like you have an infection and maybe low blood counts. If you arent getting attention from MO go else where. My husband has had these terrible bouts of sickness every couple of days and now it is every couple of weeks. He also uses Fentanyl patch which seems to give him the ability to do more than if he didnt have them. Sometimes I have to force my husband to push thru his bad times....and he comes back to say thanks for making me take that shower or get out of the house. So try to do something more each day. By the way my husband got PET scan results yesterday and all clear but he is still having these episodes. Dr says it could take a year before he feels anything close to normal.

You are in my prayers,
cray

I agree with everyone who state you should see your doctor. This is not a good time to rely on home remedies.

Andrew:

Just checking up on you. Hope you are feeling a little better.

[quote=ChristineB]Andrew:

Just checking up on you. Hope you are feeling a little better.
[/quote]

Thanks Christine. Unfortunately, I continue to get worse. And it's not for lack of seeing doctors or following their advice. I gained weight, I do mild exercise per a physical therapist, and take anti-biotic. All things the oncologist said to do. Plus I take supplements another doc suggested. But I continue to get worse.

Anyway, more tests were done. Maybe they will show something. I can't take this decline much longer. I can't afford a nursing home.

Andrew

Im really sorry to hear you arent feeling better yet. Are you able to get your insurance to cover a visiting nurse? Do you have a peg tube to help get nutrition? Im glad to see you have been back to the doctors. Dont let this get the best of you, keep going back if you dont feel well.

Your treatments havent ended that long ago where your body is still recovering. Try not to get discouraged. Radiation can take many months after treatment ends to feel almost back to normal again. Hope you feel better very soon.

Andrew:

Next time you go to the doctor, ask them about hyperbaric oxygen treatments or HBO for short. I was in pretty lousy shape when I started them in July. It has worked wonders on me and helped me to heal so much faster. It takes about 6 treatments before you suddenly start to improve. I cant say enough good things about it, HBO may help you bounce back. Its worth a try.

Hi. I thought I would post some good news. My constant decline stopped about a week ago. And then I had about 5% improvement. Then it went down and up and down and up. But this is much better than going down, down, down. The big turnaround was when I saw general practitioner up the street from me who gave me Amoxicillin.

Andrew, thanks for posting an update. Im so glad to hear you are doing better. Sometimes a good family doctor is able to fix you up. Mine sure helped me after I went from specialist to specialist and they all were finger pointers to the next doc. Hope you continue to improve now that you are back on track.

i would suggest seeing about getting on some beta glucan and coq10 to help your system get up to snuff quicker... treatments really zap the body and we must rebuild it to a healthy state in order to continue gaining strength and health. both of the ones i have listed help the immune system rebuild and give more stamina ... here is wishes for you that you continue to improve daily.

I know I posted about this a long time ago, but I have a need to close this chapter by posting more about what happened.

What had happened is I developed an infection in my upper respiratory track, mostly in my throat. And because I had just been treated for oral cancer, everyone was trying to attribute my symptoms to that. So some were suggesting post-treatment depression. Others were saying "everyone feels bad," which ignored that I was getting worse after treatment ended. But I knew I was really sick, even though none of the medical team would believe me.

The doctor who finally gave me an antibiotic that worked was not part of that medical community. And he simply believed what I told him about the symptoms. And in the months after my last post my health slowly came back. Although, not completely healthy, because I was in bad health before I was treated for cancer. But whatever it was that was bothering me back then is gone.

I was reminded of all this very recently because I started to get that same sick feeling I had back then. And my cancer follow-up ENT doc was not taking it seriously. So I went back to the place that had helped me before, was told I had a nasal infection, and with their treatment I'm starting to get better.

Andrew,
Thanks for the post. It is a great reminder to seek second opinions when something does not seem to be working out or making sense. Glad you are getting things resolved. Maybe it is time to reconsider your ENT.

Andrew - thanks for the follow-up (and glad to hear you are cancer free).
I think that specialists have a tendency to focus on their specialty (although you would think an ENT would be able to figure out a sinus infection), hence the value of seeing a really good PCP without a specific agenda. Hope those antibiotics do their job quickly!
Maria

Thanks for your replies.

I should mention that one of the oncologists had tried an antibiotic on me, but apparently not the right one.

The PCP used Amoxicillin. The PCP also seemed very interested in solving the problem. Told me to come back in ten days, and by then my downward spiral had stopped. Compare this to the other doctors acted as if I was an inconvenience. One even wanted to send me to a psychiatrist, until I pointed out that he had not bothered to take my temperature. So he took it, and it was over 100 F. Then he said "well, maybe it's an infection." But all he did after that is tell me to come back in a month.

Anyway, if I ever get cancer again, I'm not going back to any of those doctors. Although, they did get rid of my cancer. And maybe I should simply be grateful for that. And grateful that my insurance allowed me to seek help elsewhere.