Profuse Sweating and itching still after 2 years in remission

Hello,

My name is Lisa and I am a survivor of stage 4B Hodgkin's Lymphoma, Stage 2B Leukemia, and stage 2B bone cancer. I have been in remission for 2 years now. My question is, how many of you still have horrible itching and the profuse sweating still just like it was when you had cancer? I can't even walk up 3 steps without all my makeup running down my face that is, if I even make it through the blow drying and putting on makeup without my hair being completely soaked again with sweat and my shirt needing to be changes. Is this just something that we all have to deal with now after cancer or does it eventually go away, or maybe the cancer is just back or never was completely gone like I have been told. It's to the point that I don't even sleep because of the itching and sweating. Am I alone?

 

 

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    Expert

    It sounds like YOU are the expert, Lisa, not us. Of course none of us wants to be !

    I would get checked by your oncologist, but I suspect that you get lots of follow-ups already.

    Not much causes night sweats, except lymphopma, leukemia, and menopause.  Ordinarily night sweats end with complete remission. Sweating while awake is a different phenomenon, usually from a differing cause.  Per se night sweats occur while unconscious, of course.

    I would go see my doctor.

    max

  • Lisa2014
    Lisa2014 Member Posts: 5

    Expert

    It sounds like YOU are the expert, Lisa, not us. Of course none of us wants to be !

    I would get checked by your oncologist, but I suspect that you get lots of follow-ups already.

    Not much causes night sweats, except lymphopma, leukemia, and menopause.  Ordinarily night sweats end with complete remission. Sweating while awake is a different phenomenon, usually from a differing cause.  Per se night sweats occur while unconscious, of course.

    I would go see my doctor.

    max

    I do not see my Oncologist

    I do not see my Oncologist any longer. I was discharged from his care when I hit my year in remission mark. I havent seen anyone for almost a year now. The sweats are whenever I move primarilly but also at night and the itching is constant as well. I'm just not willing to see my PCP as I had cancer for 6 months before diagnosis and he kept telling me he couldn't find anything wrong and all he had to do is a simple xray to see the lymphoma. I am going to have to get a second opinion from another cancer center in town. I just can't take the itching and sweating any longer. Thanks for your reply.

     

    Lisa

  • po18guy
    po18guy Member Posts: 1,323 Member
    edited November 2016 #4
    Your age? Have you seen an

    Your age? Have you seen an endocrinologist? It may all have all triggered a form of menopause(?) Normally, such conditions can be caused by cytokines, which are cell-signaling proteins produced by active cancer cells - clearly not the case here.

  • Unknown
    edited November 2016 #5
    Lisa2014 said:

    I do not see my Oncologist

    I do not see my Oncologist any longer. I was discharged from his care when I hit my year in remission mark. I havent seen anyone for almost a year now. The sweats are whenever I move primarilly but also at night and the itching is constant as well. I'm just not willing to see my PCP as I had cancer for 6 months before diagnosis and he kept telling me he couldn't find anything wrong and all he had to do is a simple xray to see the lymphoma. I am going to have to get a second opinion from another cancer center in town. I just can't take the itching and sweating any longer. Thanks for your reply.

     

    Lisa

    Just a thought

    i too had occasional sweating at night and itching in scalp, arms and back. Mine ended up being allergic reaction to my wife's cats. Sometimes drug therapies cause changes in what we are or are not allergic to. Also sweating under minor exertion can be a symptom of diabetes. I wish you only the best.

  • Lisa2014
    Lisa2014 Member Posts: 5
    edited November 2016 #6
    po18guy said:

    Your age? Have you seen an

    Your age? Have you seen an endocrinologist? It may all have all triggered a form of menopause(?) Normally, such conditions can be caused by cytokines, which are cell-signaling proteins produced by active cancer cells - clearly not the case here.

    I am 40 years old. My

    I am 40 years old. My sweating is constant with no exertion and the itching is all over all the time. I have been in remission for just about 2 years and these symptoms have been back for about 2 months and have progressively gotten worse. I am a little overweight due to the steroids and I do not think it is diabetes. I don't know, it's probably nothing and I am probably driving myself crazy. 

  • Lisa2014
    Lisa2014 Member Posts: 5
    unknown said:

    Just a thought

    i too had occasional sweating at night and itching in scalp, arms and back. Mine ended up being allergic reaction to my wife's cats. Sometimes drug therapies cause changes in what we are or are not allergic to. Also sweating under minor exertion can be a symptom of diabetes. I wish you only the best.

    I am 40 years old. My

    I am 40 years old. My sweating is constant with no exertion and the itching is all over all the time. I have been in remission for just about 2 years and these symptoms have been back for about 2 months and have progressively gotten worse. I am a little overweight due to the steroids and I do not think it is diabetes. I don't know, it's probably nothing and I am probably driving myself crazy. 

  • Lisa2014
    Lisa2014 Member Posts: 5
    I did make an appointment

    I did make an appointment with my previous oncologist for next week. Hope all works out well.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    Lisa2014 said:

    I am 40 years old. My

    I am 40 years old. My sweating is constant with no exertion and the itching is all over all the time. I have been in remission for just about 2 years and these symptoms have been back for about 2 months and have progressively gotten worse. I am a little overweight due to the steroids and I do not think it is diabetes. I don't know, it's probably nothing and I am probably driving myself crazy. 

    Good

    Lisa,

    It's not 'nothing,' or you wouldn't be constantly itching and sweating. But I hope that it is not lymphoma again. Your appointment for next week was the right thing to do.

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    Lisa2014 said:

    I did make an appointment

    I did make an appointment with my previous oncologist for next week. Hope all works out well.

    Follow up

    One thing in your posts bothered me, Lisa. You have had serious cancers, and entered remission only two years ago.  It might be insurance-related, it might be the place where you were treated, but a current  BEST Practice is to do annual follow ups on patients, for many years.   I am in LIFELONG follow-up myself -- the center plans to see me annually for the rest of my life.  I was 53 at diagnosis, am now 60, so that might be a lot of years.   Ask your center about this.

    max

  • po18guy
    po18guy Member Posts: 1,323 Member

    Follow up

    One thing in your posts bothered me, Lisa. You have had serious cancers, and entered remission only two years ago.  It might be insurance-related, it might be the place where you were treated, but a current  BEST Practice is to do annual follow ups on patients, for many years.   I am in LIFELONG follow-up myself -- the center plans to see me annually for the rest of my life.  I was 53 at diagnosis, am now 60, so that might be a lot of years.   Ask your center about this.

    max

    Cytokines

    You are very right, max. Although those symptoms can have various causes, with such a known cancer history, I think I would lean toward being right on top of nearly everything. The itching, sweats, cough and many other conditions can be caused by cell-signalling cytokines, and some of those cytokines can be released from tumor cells. Always better to be safe than sorry.

  • Lisa04
    Lisa04 Member Posts: 3
    Well, as far as insurance

    Well, as far as insurance goes, I know when I was still working and had insurance I was getting top notch care. I was in the hospital 7 times with pneumonia, usually within 3 days of treatment. and I was getting blood transfusions all the time. Once I could no longer work my care was shotty at best. The nurses stopped returning my calls and I was advised to stop my treatment with 4 left to go because as they said, "it looks like you are all clear and the treatments are taking too much of a negative affect on you body." SO, I stopped treatment. I was taking 8 mg of morphine po qid. I needed a refill and called and called the nurses line and they never returned my calls so I had to stop taking them cold turkey. That was 3 weeks of hell on earth. It was worse than the 6 months of cancer treatment I went through. I am seeing these same Dr's on the 8th. I am going to bring up my symptoms and concerns and see what he says. If he decides not to order any tests, I will get a second opinion for sure. But since they already know my history, I thought it was best to start with them. I know something is not right, I just don't know what it is. 

  • Don't Understand

    it really seems quite simple when you back off from it. You had three forms of cancer. From what I can tell you  were treated for all three cancers with the same drug protocol - very unusual. Your treatment was cut short (stopped early). You were given opiates for pain and that was cut off causing severe withdrawal symptoms - also very unusual. You now have strong cancer symptoms. I urge you to go to the oncologist immediately and take their advice. Also have someone go with you. It really bothers me that you have been through so much. All my best.

  • Unknown
    edited November 2016 #14
    Support System

    I hope you have people to help you. It would be very advisable to have someone accompany you during your oncology appointment today. Listen very carefully. Don't argue. Also get a written diagnosis. Good luck.

  • lindary
    lindary Member Posts: 711 Member
    edited November 2016 #15
    Lisa04 said:

    Well, as far as insurance

    Well, as far as insurance goes, I know when I was still working and had insurance I was getting top notch care. I was in the hospital 7 times with pneumonia, usually within 3 days of treatment. and I was getting blood transfusions all the time. Once I could no longer work my care was shotty at best. The nurses stopped returning my calls and I was advised to stop my treatment with 4 left to go because as they said, "it looks like you are all clear and the treatments are taking too much of a negative affect on you body." SO, I stopped treatment. I was taking 8 mg of morphine po qid. I needed a refill and called and called the nurses line and they never returned my calls so I had to stop taking them cold turkey. That was 3 weeks of hell on earth. It was worse than the 6 months of cancer treatment I went through. I am seeing these same Dr's on the 8th. I am going to bring up my symptoms and concerns and see what he says. If he decides not to order any tests, I will get a second opinion for sure. But since they already know my history, I thought it was best to start with them. I know something is not right, I just don't know what it is. 

    Situation

    I know that in the area I live in there are Cancer clinics that say they will help you get financial assistance if you need it. Wehn you go for that second opinion ask about financial asistance.   good luck.

  • Lisa04
    Lisa04 Member Posts: 3
    edited November 2016 #16
    My treatment was top notch

    My treatment was top notch until I lost my insurance, then it all went down hill. I have my appointment on the 17th and a mommogram this Friday. Yes, I had ABVD treatment. I was told radiation would not help in my case because of how wide spread the Lymphoma was, (I had it everywhere byt my brain) and they said they would treat them all the same because my primary cancer was thwe Hodgkin's Lymphoma. I am seeing the same Doctor this time then I will get a second opinion from there. I have never felt completely better and I was told in my PET scan when I was decleard "in remission" that it was all gone. I found that difficult to believe but wasnted to believe it so I didn't question. I will keep you posted.

  • Lisa04
    Lisa04 Member Posts: 3
    unknown said:

    Support System

    I hope you have people to help you. It would be very advisable to have someone accompany you during your oncology appointment today. Listen very carefully. Don't argue. Also get a written diagnosis. Good luck.

    Nope, no one but me and my 3

    Nope, no one but me and my 3 children, 20, 15, and 7. My ex left. He said, " I didn't sign on for this." He was a selfish person and not the man for me. I will be recording the appointment on the 17th. My PCP found 2 lumps in my breast on Friday. I have a mammogram and ultrasound scheduled for this Friday and then the Oncologist on the 17th. My sister is also not willing to go with me. She said the last time that, (I can't watch my baby sister go through this.) I guess I could understand that. She is supportive, but from a distance. I really do not care anyway. Thanks for caring.

  • I care ..

    and wish you well.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    edited November 2016 #19
    Lisa04 said:

    My treatment was top notch

    My treatment was top notch until I lost my insurance, then it all went down hill. I have my appointment on the 17th and a mommogram this Friday. Yes, I had ABVD treatment. I was told radiation would not help in my case because of how wide spread the Lymphoma was, (I had it everywhere byt my brain) and they said they would treat them all the same because my primary cancer was thwe Hodgkin's Lymphoma. I am seeing the same Doctor this time then I will get a second opinion from there. I have never felt completely better and I was told in my PET scan when I was decleard "in remission" that it was all gone. I found that difficult to believe but wasnted to believe it so I didn't question. I will keep you posted.

    Insurance

    It is a tragedy, the way insurance companies work today, and have really always worked.  I was run over by a car years ago: seven weeks in the hospital, around two years of recovery.  Because I couldn't stand up or walk for nearly a year, my company obviously wanted to dump me, except that they were using my name to bid contracts with, which allowed me to keep insurance for a time.  But then the ax fell, and luckily I had the VA as a backup. But I know the horror of being dumped by a carrier.

    Some company used to produce "Monkey Calendars"  -- each month had a photo of chimps dressed up as people, with humorous captions below.  I recall one showed a humble female modestly dressed sitting at a desk, across from a wealthy-looking male monkey, who was supposed to be a lawyer.

    He was saying to her, Mrs Jones, in my opinion, if you don't have any money, you don't have any problems.

    Doctors are often, tragically, of the same dismissive attitude.  But it often is not the doctor themselves who are the problem. At my oncology group, the doctors have to submit any major treatment or test to the insurance analysts, to determine if they can proceed; the doctor himself has little say in the matter. 

    I hope you get the care you need, soon. Like GKH, I too care,

    max

  • lindary
    lindary Member Posts: 711 Member

    Insurance

    It is a tragedy, the way insurance companies work today, and have really always worked.  I was run over by a car years ago: seven weeks in the hospital, around two years of recovery.  Because I couldn't stand up or walk for nearly a year, my company obviously wanted to dump me, except that they were using my name to bid contracts with, which allowed me to keep insurance for a time.  But then the ax fell, and luckily I had the VA as a backup. But I know the horror of being dumped by a carrier.

    Some company used to produce "Monkey Calendars"  -- each month had a photo of chimps dressed up as people, with humorous captions below.  I recall one showed a humble female modestly dressed sitting at a desk, across from a wealthy-looking male monkey, who was supposed to be a lawyer.

    He was saying to her, Mrs Jones, in my opinion, if you don't have any money, you don't have any problems.

    Doctors are often, tragically, of the same dismissive attitude.  But it often is not the doctor themselves who are the problem. At my oncology group, the doctors have to submit any major treatment or test to the insurance analysts, to determine if they can proceed; the doctor himself has little say in the matter. 

    I hope you get the care you need, soon. Like GKH, I too care,

    max

    Insurance

    I don't remmeber who told me this but the line was "insurance companies are not in the business to make our life better.".  What was meant was that if the insurance companies were to always put their customer first they would quickly go out of business. That is why drs/hospitals will resubmit their claim multiple times knowing that evetually it will be approved, they hope. Even knowing this it doesn't us any of us one bit when it is one of our claims that is rejected. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    lindary said:

    Insurance

    I don't remmeber who told me this but the line was "insurance companies are not in the business to make our life better.".  What was meant was that if the insurance companies were to always put their customer first they would quickly go out of business. That is why drs/hospitals will resubmit their claim multiple times knowing that evetually it will be approved, they hope. Even knowing this it doesn't us any of us one bit when it is one of our claims that is rejected. 

    Insight

    Linda,

    When I first got diagnosed with the prostate cancer I went to a radiation oncologist to discuss whether surgical removal or radiation would be best.  He was a guy I had met years before when I first got lymphoma, and we talked fees for a little bit, and I mentioned the astronomical price the cancer center told me my lymphoma treatment had cost.  He balked and said, "That's what they submitted. Then the insurance company told them to come back to reality, and what they settled to pay was probably half what we asked for."   He said such was standard back-and-forth between providers and insurers.  The same with auto accident claims: The lawyer demands $100,000, the company offers $10,000, and they later meet somewhere toward the middle.

    max