Thrush, Extreme Fatigue, Anemic, 8 Weeks Post-Treatment, Help!

Hi All,

My husband finished up treatment on May 9th (chemo and radiation). He was making great strides in his recovery....able to eat and work a few hours a day. Two weeks ago, he was told he was mildly anemic and to start taking vitamins and iron. Last week, he hit a wall. His throat became so sore that he started back on the feeding tube. He has ZERO energy and has been in bed for the last 8 days. He is not always able to keep the Ensure down. He was "diagnosed" with Thrush 4 days ago and has been on the diflucan since with little improvement. I say, "diagnosed" because it was the swallow therapist who suggested it might be thrush. The oncologist did not feel it necessary to see my husband and just called in the prescription for the anti-fungal. It seems that once radiation and chemo were complete, the docs want to wash their hands of you other than the 1/month check-ups. They all point in the direction of another doc and all pointers lead back to the oncologist who is not interested.
Hopefully someone out there can shed some light on thrush and anemia for me. Can thrush knock you out like this? What causes anemia 8 weeks after last chemo treatment? I read somewhere on message board that iron will have no effect on chemo related anemia.
Any advice will be greatly appreciated.

I didnt get anemic after I finished treatment in October, but at 10 weeks in January, I got nailed with a thrush infection that knocked me back for 4 or 5 weeks. The diflucan takes a little while to work, dont settle for anything less than a 10- 14 day course. IMHO ( and my ENT agrees) a 5 day course is not enough. See if your doc will prescribe a magic mouthwash with nystatin in it to give the thrush a double whammy. Taking acidophilous supplements help too, as do salt/baking soda mouth rinses. The oncologist probably didnt need/want to see your husband because thrush is very common among chemo/rad patients and they have no problem calling in the meds to deal with it. Your ENT or dentist might be helpful with the meds instead of your oncologist.

 Best wishes,

Mike

 

On 7/7/2008 oceanglory wrote:

Hi All,

My husband finished up treatment on May 9th (chemo and radiation). He was making great strides in his recovery....able to eat and work a few hours a day. Two weeks ago, he was told he was mildly anemic and to start taking vitamins and iron. Last week, he hit a wall. His throat became so sore that he started back on the feeding tube. He has ZERO energy and has been in bed for the last 8 days. He is not always able to keep the Ensure down. He was "diagnosed" with Thrush 4 days ago and has been on the diflucan since with little improvement. I say, "diagnosed" because it was the swallow therapist who suggested it might be thrush. The oncologist did not feel it necessary to see my husband and just called in the prescription for the anti-fungal. It seems that once radiation and chemo were complete, the docs want to wash their hands of you other than the 1/month check-ups. They all point in the direction of another doc and all pointers lead back to the oncologist who is not interested.
Hopefully someone out there can shed some light on thrush and anemia for me. Can thrush knock you out like this? What causes anemia 8 weeks after last chemo treatment? I read somewhere on message board that iron will have no effect on chemo related anemia.
Any advice will be greatly appreciated.

found this site below thought it might help

http://www.medscape.com/viewarticle/434125

 

On 7/7/2008 oceanglory wrote:

Hi All,

My husband finished up treatment on May 9th (chemo and radiation). He was making great strides in his recovery....able to eat and work a few hours a day. Two weeks ago, he was told he was mildly anemic and to start taking vitamins and iron. Last week, he hit a wall. His throat became so sore that he started back on the feeding tube. He has ZERO energy and has been in bed for the last 8 days. He is not always able to keep the Ensure down. He was "diagnosed" with Thrush 4 days ago and has been on the diflucan since with little improvement. I say, "diagnosed" because it was the swallow therapist who suggested it might be thrush. The oncologist did not feel it necessary to see my husband and just called in the prescription for the anti-fungal. It seems that once radiation and chemo were complete, the docs want to wash their hands of you other than the 1/month check-ups. They all point in the direction of another doc and all pointers lead back to the oncologist who is not interested.
Hopefully someone out there can shed some light on thrush and anemia for me. Can thrush knock you out like this? What causes anemia 8 weeks after last chemo treatment? I read somewhere on message board that iron will have no effect on chemo related anemia.
Any advice will be greatly appreciated.

I've had thrush a great many times -- I keep a big bottle of Nystatin mouthwash just in case. It's been the result of immune suppression from a double lung transplant, treatment for both Hodgkins and non-Hodgkins lymphoma, general weakness from other illnesses, etc. It can knock you out, but it always seems to do so indirectly. You can get bad candida infections of the lung, but they're rare (thrush is just a yeast infection in the mouth). 

What gets me with thrush is that eating and drinking can become so painful that I get dehydrated and stop eating -- especially sweet, salty, hot, or spicy things. And because the thrush comes only if you're already weakened by something else, that effect just makes you weaker and the thrush gets worse. I've had it get to the point that my gums and tongue were bleeding, my lips cracked and bleeding, and any movement of my mouth hurts, even contact of teeth with tongue or cheeks. At that point it further weakens you by interfering with just about everything -- swallowing, spitting, and so on -- and I've gotten pneumonia from the lack of coughing and spitting before. Thrush is like that last little thing that pushes you too far when you're already down and weak, worsening your problems and making you unbearably uncomfortable even if you do nothing.

You are right about the lack of interest after "successful" treatment ("success" being narrowly defined as remission). You're left holding a bag of sometimes horrible symptoms just when you seemed to be getting better -- thrush, headaches, neuropathies, stomach upsets, anemia and/or neutropenia that all mysteriously worsen or appear for the first time after treatment stops, but which are clearly a direct result of it.

 In my case, after a round robin of finger pointing and shirking responsibility between about five specialists, I finally picked the one I liked the best and who seemed to like me, and made him the de facto coordinator of my care and made me 'his' problem. He would treat the chemo related symptoms, or refer them with strong language if necessary to the doctor who you might call the 'rightful owner' of that problem.

 All that stuff is unpredictable and lasted (for me) a long time, and I'm still having some problems after 30 months from the last doses. I'm sure that's not typical, but no one ever mentioned that I should plan for this possibility or that I might feel better during treatment than for several months afterward. The side effects were grossly understated.

 

I guess the point of this reply is to be patient -- the end of treatment, even if totally successful, isn't really the end of illness or feeling bad. I also made great strides in recovery for a few months after treatment before crashing on multiple occasions. Exercise helps. Other than that, it's a matter of time and treating the symptoms caused by the damage done by treatment. 

 

 

On 7/7/2008 oceanglory wrote:

Hi All,

My husband finished up treatment on May 9th (chemo and radiation). He was making great strides in his recovery....able to eat and work a few hours a day. Two weeks ago, he was told he was mildly anemic and to start taking vitamins and iron. Last week, he hit a wall. His throat became so sore that he started back on the feeding tube. He has ZERO energy and has been in bed for the last 8 days. He is not always able to keep the Ensure down. He was "diagnosed" with Thrush 4 days ago and has been on the diflucan since with little improvement. I say, "diagnosed" because it was the swallow therapist who suggested it might be thrush. The oncologist did not feel it necessary to see my husband and just called in the prescription for the anti-fungal. It seems that once radiation and chemo were complete, the docs want to wash their hands of you other than the 1/month check-ups. They all point in the direction of another doc and all pointers lead back to the oncologist who is not interested.
Hopefully someone out there can shed some light on thrush and anemia for me. Can thrush knock you out like this? What causes anemia 8 weeks after last chemo treatment? I read somewhere on message board that iron will have no effect on chemo related anemia.
Any advice will be greatly appreciated.

I also completed radiation and chemo at the end of Oct.  I can't speak on anemia but I wound up in the hospital in Dec with an infection in my port area (I was still receiving hydration infusions) when they discovered I also had thrush.  I found out that the reason why patients undergoing chemotherapy and/or head and neck radiation are at an increased risk of developing thrush is because these therapies target rapidly dividing cancer cells. The mucosal cells which line the mouth are also rapidly dividing and are damaged during treatment which leaves the mouth susceptible to infection.  We know that our immune system becomes compromised while receiving chemotherapy and that means the infection can spread to other organs, such as the esophagus (causing pain with swallowing) or throughout the body so it can be very serious.   

When hospitalized in Dec, I was on the oncology floor and it was actually a nurse that first noticed the thrush.  I know my oncologist cares but it was actually my primary care doctor that ordered the diflucan.  I spent 5 days on IVs in the hospital and felt better than I had in weeks when released but it still took a ten day completion of diflucan before I began to feel noticeably better.  I wish you and your hubby the best.  Things will improve but it takes time.        

lack of interest in my case is even before treatment, oncologists seem to have it easy. They just pick a protocol based on whatever trials they like best and stick with it. They answer every question with variations of the words it effects everyone different. So i ask if everyone is effected different why is my treatment not adjusted maybe a little more chemo or a couple weeks more or why once you pick my chemo drugs and number of weeks after the first 10 minute meeting thats it. You get another 10 minute meeting 3 weeks into treatment. Good luck if you get some side effects call in and we will phone in a presciption no we wont bother to look at you.

These posts about thrush are very importtant because i start radiation in 3 weeks and i am the one who is going to have to watch out for it. And say i want dulfican and the mouthwash whatever.  Like when i developed the erbitux rash and went into the office and still couldnt get them to look at it just sent out a nurse with a prescription then i got on the internet called back and told nurse what others have got and i guess she told doctor who

called in what i kind of ask for actually i was just asking about.

Im sure there are some good oncologists.

But basically they just chose a protocol and say that the data supports it and thats what you get and tell you to watch out for side effects and then they call in the standard prescription for the side effects.

 

 

after reading these posts i am feeling very fortunate that my boyfriend has had nothing but good experiences with his doctors during his treatment.  he was watched very closely...blood work every week and chemo adjusted accordingly to those results.  thank goodness he never had thrush...one of his doctors and his dentist recommended using Alkalol as a gargle and mouth swish throughout the day...it helps with PH balance in the mouth...not sure if this was why he never had thrush but it also helped break up the mucous that got stuck in the back of his throat.  Alkalol is purchased at the pharmacy...it is kept behind the counter but it isn't a prescription.  He uses it diluted with water.

~meesh

 

On 7/8/2008 victor53 wrote:

lack of interest in my case is even before treatment, oncologists seem to have it easy. They just pick a protocol based on whatever trials they like best and stick with it. They answer every question with variations of the words it effects everyone different. So i ask if everyone is effected different why is my treatment not adjusted maybe a little more chemo or a couple weeks more or why once you pick my chemo drugs and number of weeks after the first 10 minute meeting thats it. You get another 10 minute meeting 3 weeks into treatment. Good luck if you get some side effects call in and we will phone in a presciption no we wont bother to look at you.

These posts about thrush are very importtant because i start radiation in 3 weeks and i am the one who is going to have to watch out for it. And say i want dulfican and the mouthwash whatever.  Like when i developed the erbitux rash and went into the office and still couldnt get them to look at it just sent out a nurse with a prescription then i got on the internet called back and told nurse what others have got and i guess she told doctor who

called in what i kind of ask for actually i was just asking about.

Im sure there are some good oncologists.

But basically they just chose a protocol and say that the data supports it and thats what you get and tell you to watch out for side effects and then they call in the standard prescription for the side effects.

 

 

Hi Victor

I speak from my own experience and I had two wonderful oncologists - one radiation and one medical oncologist but I realize there are less than good doctors, etc.  My "former" primary care doctor saw nothing wrong when I went to him to check out an enlarged tonsil that an emergency room doctor had pointed out.  He referred me to a cardiologist to have a stress test due to continuing high blood pressure and minor chest pains (my dad had his first heart attack at 56 - I was 60).  The cardiologist looked in my mouth and said "we need to get you to an ENT immediately and they may want to biopsy that" - a week later I was in surgery and diagnosed w/ oralpharyngeal cancer. 

I was treated at Cancer Treatment Center of America in Zion, IL and received wonderful care.  Once treatment started, they constantly monitored me through blood tests and exams.  They don't know until they start how your body is going to respond to any type of treatment.  My chemo drug amount was altered and eventually discontinued when it showed I was not tolerating it well.  I was assured I was okay and this was not uncommon (which I have learned on this site and through research to be true).  I was as frustrated as you appear that I was only given some information on an as needed or requested basis.  I didn't know enough to ask when I first began my journey.  Looking back, I think there is just too much info for us to absorb in the beginning - especially the oncologist giving us scenarios that might not ever happen to us.  Cancercompass.com is one of the best places to go to ask the many patients, caregivers, and members when a problem arises.  I went to the hospital emergency room when the side of my face and neck swelled up after radiation had ended - scared me to death.  It is serious in that it can close off your breathing but I found out through this site that it has happened to others. 

You can Google "cancer & thrush" to find some good info on how to prevent thrush.  IF it appears it will probably be at the end of your radiation or after it has ended because the effects of radiation generally don't show up early.  Look for white patches on your tongue.  Good luck - we are all behind you so if you have any questions just ask.