Fear of recurrence. When will a cold be just a cold?

hodgkins94
hodgkins94 Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I was diagnosed with Hodgkin's Stage IVa in November 1994 and underwent 12 rounds of ABVD. I did not have radiation. I have been cancer free since May 1995. Due to the chemotherapy I have always had a low white blood cell count--roughly 3800. This week I had a check-up and my WBC was only 3100, low even for me. I will repeat the test in two weeks. In the meantime, I have developed chest pain and a cough. Chances are I have a simple cold, yet I am panicked that the cancer is back. It's been nearly 15 years, and I still have intense fear of a recurrence. Will that ever go away? Do other cancer survivors feel this? Every cold I have had since 1994 has freaked me out, especially ones that happen at this time of year. However, knowing my WBC is so low is scaring me even more. Why is it so low? What if it is cancer again? What if it is just a cold but my WBC are so low I can't fight it off and end up with pneumonia-and die from that? My mind races. Even as I type this, my brain knows this sounds ridiculous, but I still feel the fear.

Thoughts? Advice?

Comments

  • DennisR
    DennisR Member Posts: 148
    #2
    Hey H94,
    Only every day, but
    Hey H94,

    Only every day, but I try not to dwell on it. :)
    I also have varying degrees of high and low blood counts, the latest is low Hemoglobin for no apparent reason other than a side effect of treatments, an ornery Bone Marrow demanding attention and a recent episode of an infection. My Wbcs are now high for me and in the normal range.
    The Drs can prescribe some medicines that force the Marrow to produce the needed cells and they seem to work...until the next time.
    I'm mostly concerned about the Flu season that's upon us now, since I have practically no immune system whatsoever, I have the cells but, the Drs don't know whether they reproduced with any of the childhood immunities they had pre Transplant. I also can't have any vaccines, or Flu shots for at least 4 more months, so they suspect I can catch Measles, mumps, chicken Pox, Polio, or anything else that comes down the pike. It's a Worry, my business is full of large containers of Alcohol based Hand cleaners, and I'm not bashful about telling customers to use them. They're all happy to do so.
    When I flew to California for my Sister in Laws funeral, I caught a serious lung infection which required several days in the Hospital in an Isolation ward. I got my first Hospital bath from a Nurse there, after a lengthy protest about vanity, privacy, quality of life, embarrasment,etc. I hope she doesn't come in my store any time soon. That's a joke, she was a wonderful and professional person and she can give me a bath anytime she wants to. :)
    She started with a shampoo which I truly enjoyed and then cajoled me into the rest of it. It was fine and not nearly as invasive personally as I feared.
    Sorry to seem so flippant about your concerns, they're very real, but sometimes we tend to allow our minds to dwell too much into things...and we all know what happens then.
    DennisR
  • lewandowski46
    lewandowski46 Member Posts: 3
    #3
    Yes
    hodgkins94, I also am a survivor of almost 15 years. About 2 years ago I had a run in with the same thoughts your having. During a 2 week time period while I was home from college, I gained a good bit of weight, was having night sweats, chest pains, never feeling on top of my game. I decided to visit the doctor as a precaution, had blood tests, CT scans, the whole 9 yards. Nothing was out of the normal, I just had a random cold/flu. What really spooked me though is the doctor at one point mentioned, along with 100 other possibilities, that my lymphoma could be relapsing.

    Of course this instantly started my mind racing through every what if in the book. I remember the doctor saying they would call me if anything bad came up in the tests, so I sat staring at my phone for 2 days, of course nobody ever called since all tests came back normal.

    It was a normal flu/cold that I got, but all it took was the doctor to mention, that since I was a cancer survivor, that there was a .0001% chance the cancer could be relapsing. That slim chance to a cancer survivor is all it takes to get the mind racing.


    I hope everything turns out positive for you and you get some good news soon.
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    #4
    Fear Of Recurrence...
    First off, it's great to see you out 15 years!!! And for IVA this is a big deal. Though I'm not a fortune teller or doctor, you've been in remission for so long, while nothing is 100%, there is more than a good chance, that the HD won't be back when you've been out this long.

    That being said, you are what is referred to as a long term survivor. I recently read somewhere, and I wish I could remember who the quote was from, "you may be cancer free, but you will never be free of cancer." There is a reason, which so many of us long termers fail to realize, that there is a need for follow-up screening with the oncologist. And believe it or not, it may not have as much to do with follow-up for recurrence, as much as to make sure that late side effects from the chemo (and rads if applicable) to not make an appearance.

    Only within recent years, has medicine finally realized, that while treatments have short term side effects (as they've always known), but they also have late term. These are gradual effects that creep up on you, especially (if you're like me) if you're not followed up on. Today, it is standard protocol to follow up on everyone, forever, once you've completed treatments. You may never develop a late side effect, but if you do begin to, they can catch it earlier (than they did with me - my ignorance was almost fatal).

    My suggestion to you, is follow up with what's called a "Late Term Clinic". They are all over the country (i.e. Sloan Kettering, Stanford U., Children's Hospital of Phila, Dana Farber in Boston, etc.). I was introduced to this "world" rudely last year, with the need for emergency bypass surgery. I am only 43. But it was clear, that the radiation that I was exposed to in treatments back in 1988(disclaimer, radiation treatments have gotten so much better these days), caused the main artery to my heart to be scarred, and blocked (90%). I hadn't been followed up in over 12 years. Simple routine, annual exams by someone trained to know what to look for, could have produced a much less destructive result had it been caught earlier. I now see a doctor who specializes in these types of issues, and now even my family doctor is getting into it, because clearly she was never trained to look for this stuff, nor did she see it coming (and she's been my doctor for 20 years).

    If you are interested in pursuing this, I have a list of these clinics, as well as web sites that just might be of help to you.

    Paul E. (Hodgkoid2003)
  • DennisR
    DennisR Member Posts: 148
    #5
    lewandowski46 said:

    Yes
    hodgkins94, I also am a survivor of almost 15 years. About 2 years ago I had a run in with the same thoughts your having. During a 2 week time period while I was home from college, I gained a good bit of weight, was having night sweats, chest pains, never feeling on top of my game. I decided to visit the doctor as a precaution, had blood tests, CT scans, the whole 9 yards. Nothing was out of the normal, I just had a random cold/flu. What really spooked me though is the doctor at one point mentioned, along with 100 other possibilities, that my lymphoma could be relapsing.

    Of course this instantly started my mind racing through every what if in the book. I remember the doctor saying they would call me if anything bad came up in the tests, so I sat staring at my phone for 2 days, of course nobody ever called since all tests came back normal.

    It was a normal flu/cold that I got, but all it took was the doctor to mention, that since I was a cancer survivor, that there was a .0001% chance the cancer could be relapsing. That slim chance to a cancer survivor is all it takes to get the mind racing.


    I hope everything turns out positive for you and you get some good news soon.

    Hey Lewandowski,
    Sort of
    Hey Lewandowski,

    Sort of reminds me of when my wife went out into the Garden and harvested some fresh beets and added them to our homemade garden juice in the morning. I wound up heading to the emergency room at the VA thinking I was bleeding to death, without telling my wife because I didn't want to scare her.
    When I finally called and told her where I was, (sitting in the exam room with my Doctor discussing internal bleeding and Cancer), she told me about the beets. I had to tell the Doctor who got a great laugh from it, but I was Beet Red.
    DennisR
  • mbundgus
    mbundgus Member Posts: 14
    #6
    hodgkoid2003 said:

    Fear Of Recurrence...
    First off, it's great to see you out 15 years!!! And for IVA this is a big deal. Though I'm not a fortune teller or doctor, you've been in remission for so long, while nothing is 100%, there is more than a good chance, that the HD won't be back when you've been out this long.

    That being said, you are what is referred to as a long term survivor. I recently read somewhere, and I wish I could remember who the quote was from, "you may be cancer free, but you will never be free of cancer." There is a reason, which so many of us long termers fail to realize, that there is a need for follow-up screening with the oncologist. And believe it or not, it may not have as much to do with follow-up for recurrence, as much as to make sure that late side effects from the chemo (and rads if applicable) to not make an appearance.

    Only within recent years, has medicine finally realized, that while treatments have short term side effects (as they've always known), but they also have late term. These are gradual effects that creep up on you, especially (if you're like me) if you're not followed up on. Today, it is standard protocol to follow up on everyone, forever, once you've completed treatments. You may never develop a late side effect, but if you do begin to, they can catch it earlier (than they did with me - my ignorance was almost fatal).

    My suggestion to you, is follow up with what's called a "Late Term Clinic". They are all over the country (i.e. Sloan Kettering, Stanford U., Children's Hospital of Phila, Dana Farber in Boston, etc.). I was introduced to this "world" rudely last year, with the need for emergency bypass surgery. I am only 43. But it was clear, that the radiation that I was exposed to in treatments back in 1988(disclaimer, radiation treatments have gotten so much better these days), caused the main artery to my heart to be scarred, and blocked (90%). I hadn't been followed up in over 12 years. Simple routine, annual exams by someone trained to know what to look for, could have produced a much less destructive result had it been caught earlier. I now see a doctor who specializes in these types of issues, and now even my family doctor is getting into it, because clearly she was never trained to look for this stuff, nor did she see it coming (and she's been my doctor for 20 years).

    If you are interested in pursuing this, I have a list of these clinics, as well as web sites that just might be of help to you.

    Paul E. (Hodgkoid2003)

    Hodgkin's Survivor ---
    I was Diagnosed with Hodgkins Lymphoma when I was 5 in 1963.. Out 45 years -- I was one of the first trial Chemo - Cytoxin/Radiation combination treatments. It was a success and I was declared CURED in 1972.

    I think I am one the oldest long term statistics. Although if treated in the 80 and or even the 90 I guess my stats might not apply as procedures are more refine. After being treated for Hodgkins Lymphoma in 1963 with Chemo and radiation I was diagnosed with Thyroid Cancer 13 years later in 1976. I was not able to go into Labor when giving birth to my two sons... but had two c-sections and 2 healthy Children, who are now 27 and 28 with no known Cancers. I had a Spinal Cord Miningioma in 1996, and Breast Cancer in 2000, all of which are classic scattered (crude) radiation results. As of today nothing new.

    They say if you get a cold that's good... it is when your not getting simple illnesses to worry.... I was told your imune system is fignting a growing Cancer. Probably an old wise tale...though.
  • my children
    my children Member Posts: 1
    #7
    calm the fear
    I have NHL. I have since 2001.Yes i still get nervous when I have symptoms of a cold or fever or night sweats etc. I have learned that if i worry so much about these things then my family suffers. I keep up with colds and coughes but i don't let them consume me anymore. The Lord keeps me going and i thank him everyday for life.
  • erdierzsi
    erdierzsi Member Posts: 1
    #8
    my children said:

    calm the fear
    I have NHL. I have since 2001.Yes i still get nervous when I have symptoms of a cold or fever or night sweats etc. I have learned that if i worry so much about these things then my family suffers. I keep up with colds and coughes but i don't let them consume me anymore. The Lord keeps me going and i thank him everyday for life.

    a continuing mental battle
    I am a 14 month surviver of large B-cell NHL. I feel like I have had a year-long "honeymoon" from the difficulties of 2009, with my life seeming to be very much back on track - including realizing a long-term goal of moving overseas to serve as a missionary. I had one little scare in the spring after a particularly nasty, but quick flu, which fortunately dissolved quickly. Now I am six weeks into my move overseas, and two weeks after a little cold, i am left with a dry cough which though more slight, reminds me all too much of the 6-month cough that led to my diagnosis. Have taken 9 days of an antibiotic, but hasn't completely gotten rid of the cough. And added now, is a heaviness/pressure in my chest, and a fear/feeling that all is not right in my body. I wonder if it is as much psychological as it is physical, fearing that what I worked so long and hard for and finally been able to do, will be taken away by recurrence of disease. It is a constant battle to continue to trust God. He is good, all the time, and my whole desire is that whatever He allows into my life (both hurt and healing) will be used for His glory. But the last week or so it has often been literally a minute-by-minute war to fight the "what-if's" and fears. I am starting the process of getting my next scheduled checkup in my country of residence. That brings other questions, but I want nothing more than to hear that bloodwork is good and CT is unchanged, and this little cough and feeling are chalked up to a simple cold or some kind of allergy. Recently I was asked for my thoughts on "courage" based on what I've been through. I think often courage is continuing to give the fears a shove back and carrying on day-to-day, one step at a time.
  • KC13167
    KC13167 Member Posts: 215
    #9
    erdierzsi said:

    a continuing mental battle
    I am a 14 month surviver of large B-cell NHL. I feel like I have had a year-long "honeymoon" from the difficulties of 2009, with my life seeming to be very much back on track - including realizing a long-term goal of moving overseas to serve as a missionary. I had one little scare in the spring after a particularly nasty, but quick flu, which fortunately dissolved quickly. Now I am six weeks into my move overseas, and two weeks after a little cold, i am left with a dry cough which though more slight, reminds me all too much of the 6-month cough that led to my diagnosis. Have taken 9 days of an antibiotic, but hasn't completely gotten rid of the cough. And added now, is a heaviness/pressure in my chest, and a fear/feeling that all is not right in my body. I wonder if it is as much psychological as it is physical, fearing that what I worked so long and hard for and finally been able to do, will be taken away by recurrence of disease. It is a constant battle to continue to trust God. He is good, all the time, and my whole desire is that whatever He allows into my life (both hurt and healing) will be used for His glory. But the last week or so it has often been literally a minute-by-minute war to fight the "what-if's" and fears. I am starting the process of getting my next scheduled checkup in my country of residence. That brings other questions, but I want nothing more than to hear that bloodwork is good and CT is unchanged, and this little cough and feeling are chalked up to a simple cold or some kind of allergy. Recently I was asked for my thoughts on "courage" based on what I've been through. I think often courage is continuing to give the fears a shove back and carrying on day-to-day, one step at a time.

    The Battle
    Trust, He may want you to use your gifts, here at home! Kellie

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