worried

hilde451
hilde451 Member Posts: 229 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hello to everyone.

I have not written in a long time. I have FNHL stage 4 and had radiation in 04 and surgery. Then I was ok till 09 , and it came back did Zevalin.

Have been in remission since dec 09. The last few month I have had bronchial problems and it hurts when I breathe but they keep saying acid reflux. Now I started running a temperature 99.7 the last three nights.

Should I call my Oncologist in this? I am so confused about this, hope someone can guide me. I dont seem to get any satisfaction from my primary care dr. Plus I seem to have a weird cough. I had radiation to the neck and cheecks. I will wait for someone to answer my post. Thank you so very much. Hilde

Comments

  • Sten
    Sten Member Posts: 162 Member
    #2
    See your oncologist

    Hi Hilde,

    Since you are worried, call your oncologist. Even if it is not cancer, this call may lead to finding out what your trouble is. Maybe you will get the advice to see another primary care doctor.

    Sten

  • OO7
    OO7 Member Posts: 281
    #3
    Better safe than sorry

    Hilde,

    If I was in your shoes, I would call the oncologist.  My Primary care physician thought I was crazy for having a biopsy.  He looked at two other biopsy reports and ct scan and thought I was nuts.  I was the last person on the planet who thought I had cancer.  Well after that biopsy I found out that I do have cancer and regrettably it is stage four.  I haven't seen my PC since.  I call my oncologist when ever I have a concern.   

    Call you have nothing to lose.  Like you I have Follicular, stage four.  It's incurable and we know that, therefore we need to be our best advocates. 

    I hope it's nothing but your oncologist will know when to be concerned.  Good luck!

  • hilde451
    hilde451 Member Posts: 229 Member
    #4
    OO7 said:

    Better safe than sorry

    Hilde,

    If I was in your shoes, I would call the oncologist.  My Primary care physician thought I was crazy for having a biopsy.  He looked at two other biopsy reports and ct scan and thought I was nuts.  I was the last person on the planet who thought I had cancer.  Well after that biopsy I found out that I do have cancer and regrettably it is stage four.  I haven't seen my PC since.  I call my oncologist when ever I have a concern.   

    Call you have nothing to lose.  Like you I have Follicular, stage four.  It's incurable and we know that, therefore we need to be our best advocates. 

    I hope it's nothing but your oncologist will know when to be concerned.  Good luck!

    Thank you

    Thank you for the great advice , I believe I will call , my fever is down right now but could spike again this evening.

    I will call , thank you

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #5
    Yes

    hilde,

    Good to see you again, but sorry about the potential issues.

    Anyone can have a fever, obviously, but a call to the onc is seldom a bad thing.  I am surprised you are not in a long-term follow-up program, in which you see an onc once or so a year anyway, especially since you have fought the Lymphoma Dragon twice already. I am lucky, since my cancer center puts all patients who are in long-term remission in a lifelong Survivorship Program. I see an oncology NP once a year

    The doctors investigated a severe cough that I had had for a long time, and a lung specialist determined that my lung fibrosis was caused by acid reflux, so do not underestimate what stomach gases can do to the lungs.  Stomach acid is of the same ph as a car battery !  Breathing it long-term can scald the lung tissue. It did mine.

  • hilde451
    hilde451 Member Posts: 229 Member
    #6
    Max Former Hodgkins Stage 3 said:

    Yes

    hilde,

    Good to see you again, but sorry about the potential issues.

    Anyone can have a fever, obviously, but a call to the onc is seldom a bad thing.  I am surprised you are not in a long-term follow-up program, in which you see an onc once or so a year anyway, especially since you have fought the Lymphoma Dragon twice already. I am lucky, since my cancer center puts all patients who are in long-term remission in a lifelong Survivorship Program. I see an oncology NP once a year

    The doctors investigated a severe cough that I had had for a long time, and a lung specialist determined that my lung fibrosis was caused by acid reflux, so do not underestimate what stomach gases can do to the lungs.  Stomach acid is of the same ph as a car battery !  Breathing it long-term can scald the lung tissue. It did mine.

    Thank you Max

    Max glad to see you on here,  May I ask how they treated that fibrosis problem? what dr did you see for that. I am at my wits ends. I tell these drs this problem and no one seems to know what to do.

    Then of course I spike a fever now and then. Which is strange. I hope that is all that is.

    It is good to see you doing so well. I do see my Oncologist once a year. This is the first year he wants to skip the scan. So it is making me a bit nervous.

    I also have a problem when to call the Oncologist or my family dr. Thank you for answering me. I appreciate it very much.  Stay well. Hilde

     

     

     

  • alihamilton
    alihamilton Member Posts: 347 Member
    #7
    hilde451 said:

    Thank you Max

    Max glad to see you on here,  May I ask how they treated that fibrosis problem? what dr did you see for that. I am at my wits ends. I tell these drs this problem and no one seems to know what to do.

    Then of course I spike a fever now and then. Which is strange. I hope that is all that is.

    It is good to see you doing so well. I do see my Oncologist once a year. This is the first year he wants to skip the scan. So it is making me a bit nervous.

    I also have a problem when to call the Oncologist or my family dr. Thank you for answering me. I appreciate it very much.  Stay well. Hilde

     

     

     

    Jumping back on the band wagon maybe!

    just rejoining as I have my own concerns but interested to see your comment that your oncologist wants to skip a scan this year. I was scanned every year for six years, then missed a year and had my last one in March of last year. My oncologist ibecame concerned about giving scans too often! I relocated to the UK last year and have to establish my cancer history with the system here which is not easy! I also have a cough and feel like I have the flu, no fever, loss of weight etc but just feel grotty for the past five weeks. Two weeks ago, I also developed a head cold and my head still feels stuffy. My GP listened to my chest and put me on antibiotics for a week but, although the cough has become thinner' I am still coughing and do not feel well. Sleeping and eating very well though and no loss of weight.  Interesting to read that acid reflux can also cause the cough, but I guess not the head cold too! I will be calling my doctor next week if I am no better and hope she might send me for a chest X-ray. My first follicular lymphoma was in my mesentery. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #8
    alihamilton said:

    Jumping back on the band wagon maybe!

    just rejoining as I have my own concerns but interested to see your comment that your oncologist wants to skip a scan this year. I was scanned every year for six years, then missed a year and had my last one in March of last year. My oncologist ibecame concerned about giving scans too often! I relocated to the UK last year and have to establish my cancer history with the system here which is not easy! I also have a cough and feel like I have the flu, no fever, loss of weight etc but just feel grotty for the past five weeks. Two weeks ago, I also developed a head cold and my head still feels stuffy. My GP listened to my chest and put me on antibiotics for a week but, although the cough has become thinner' I am still coughing and do not feel well. Sleeping and eating very well though and no loss of weight.  Interesting to read that acid reflux can also cause the cough, but I guess not the head cold too! I will be calling my doctor next week if I am no better and hope she might send me for a chest X-ray. My first follicular lymphoma was in my mesentery. 

    Lungs

    Hilde and Ali,

    I now see a Pulmonologist (lung specialist) for my lung issues.  My cancer Wellness Center sent me, since I continued to have coughing fits and shortness of breath, five years after treatment ended.  He did a CT and spotted fibrosis (scarring) in the base of both lungs, which was not present when I ended chemo.  He did some research into whether it could have been caused by Bleomycin, but later concluded that it was instead caused by chronic, severe, acid reflux, which he told me is not uncommon.  The spincter at the top of my stomach does not close (I have a large hiatial hernia, which is at the top of the stomach, where the tube passes throught the chest diaphragm). He doubled my Nexium, which ended the cough !

    Fibrosis is essentially untreatable (and irreversible), but lung function can be improved with inhalers and other health changes.  And, the doctor works to ensure no worsening occurs.  He gave both a daily inhaler and an emergency inhaler.

    The most common oncology-related causes of lung damage are the drug Bleomycin (used in ABVD and other combinations) and various types of radiation to the chest area. Bleomycin causes lung issues in 10% of all users, and fibrosis in 2% of all users.

    I hope both of you resolve your current health issues with no diagnosis of cancer,

    max

  • hilde451
    hilde451 Member Posts: 229 Member
    #9
    alihamilton said:

    Jumping back on the band wagon maybe!

    just rejoining as I have my own concerns but interested to see your comment that your oncologist wants to skip a scan this year. I was scanned every year for six years, then missed a year and had my last one in March of last year. My oncologist ibecame concerned about giving scans too often! I relocated to the UK last year and have to establish my cancer history with the system here which is not easy! I also have a cough and feel like I have the flu, no fever, loss of weight etc but just feel grotty for the past five weeks. Two weeks ago, I also developed a head cold and my head still feels stuffy. My GP listened to my chest and put me on antibiotics for a week but, although the cough has become thinner' I am still coughing and do not feel well. Sleeping and eating very well though and no loss of weight.  Interesting to read that acid reflux can also cause the cough, but I guess not the head cold too! I will be calling my doctor next week if I am no better and hope she might send me for a chest X-ray. My first follicular lymphoma was in my mesentery. 

    hello Ali

    Welcome to the network, I used to write a lot. But sometimes I feel that I dont want to complain but I have these issues also.

    next week I will get to the bottom of my issues. Tired of the pain and shortness of breath. I also wonder which Dr I need to tell my issues to my Primary care Dr or my Oncologist. I have basically never bothered my oncologist. I hope you will get your issues adressed and I wish you well. Hugs Hilde

  • alihamilton
    alihamilton Member Posts: 347 Member
    #10
    hilde451 said:

    hello Ali

    Welcome to the network, I used to write a lot. But sometimes I feel that I dont want to complain but I have these issues also.

    next week I will get to the bottom of my issues. Tired of the pain and shortness of breath. I also wonder which Dr I need to tell my issues to my Primary care Dr or my Oncologist. I have basically never bothered my oncologist. I hope you will get your issues adressed and I wish you well. Hugs Hilde

    I hope you get answers this

    I hope you get answers this week! Do let us know how it goes. I would go to your oncologist if you can. I don't have one here yet! 

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