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Profuse Sweating and itching still after 2 years in remission

Lisa2014
Posts: 5
Joined: Nov 2016

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?

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

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
Posts: 5
Joined: Nov 2016

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

Anonymous user (not verified)

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
Posts: 5
Joined: Nov 2016

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. 

po18guy
Posts: 1083
Joined: Nov 2011

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.

Lisa2014
Posts: 5
Joined: Nov 2016

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. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

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

Lisa2014
Posts: 5
Joined: Nov 2016

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

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
Posts: 1083
Joined: Nov 2011

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's picture
Lisa04
Posts: 3
Joined: Apr 2014

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. 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

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.

Anonymous user (not verified)

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.

Anonymous user (not verified)

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.

Lisa04's picture
Lisa04
Posts: 3
Joined: Apr 2014

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.

Lisa04's picture
Lisa04
Posts: 3
Joined: Apr 2014

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

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's picture
lindary
Posts: 695
Joined: Mar 2015

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's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

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

Anonymous user (not verified)

when I went to MD Anderson for 4 days of second opinion tests, I was billed $54k+. It was obvious they were piling on tons of tests just to make money. 2 CTs not 1, heart stress tests, bone marrow from both hips, not just one, etc etc etc. When called in for my test results I was told to be there at 7 AM (don't be late!). Finally met with the doctor at 11:00 AM for about 10 minutes during which time she took a phone call. It was obvious she had not looked at the report before our meeting. Plus, in prep for the visit I was told to bring all my CDs from past scans, and all my records which I dutifully collected with great effort. When I checked in I gave them to the "social worker" but my report said "no reference scans available". About 10 CDs. Somebody lost them or I suspect threw them away. I have to wonder if the reason for two scans was confusion or maybe the first scan was lost. This kind of confusion and greed really drives up medical costs and I understand why insurance companies balk. Many facilities ask for the moon hoping to get just some of it. My insurance paid $51k and I paid almost $4k. Add the expenses of airfare, hotel bills, meals, car rental, parking etc it was a very expensive exercise. I felt cheated and would never go back there. I know people who love the place but not me. In future I will stick with individual specialists in my area - people I can sit and have a quiet converstaion with and not be herded around like cattle. After 4 years I still have a very bad taste in my mouth. This is only part of why medical care is so high - as WC Fields said " never give a sucker an even break".

Anonymous user (not verified)

i was in hospital for 8 days for extraction of a retroperitoneal (sp?) biopsy. Awful experience. The pretty young assistants were constantly asking if I would like some ice cream or this or that. i was flattered by their attention. When I reviewed the bill I saw that those creamsicles cost me $12.50 each. My daily multivitamin was $32. Tylenol were $8 per pill. Just another way of running up your bill. The medical system is fraught with such money making gimmicks.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

I think the following response to GKH's post remains relevant enough to Lisa's questions to include here.

I regard travelling to any of the elite cancer centers a waste of time and money in probably 90% of cases. There may be exceptions regarding extremely rare cancers.  But, by definition, most cancers most people have are not rare or unusually problematic.  Lots of the guys at the Prostate Board have travelled internationally for care -- care that they could have got at home.  They discuss going to differing countries to get tests that most of the other writers have never heard of, and which are very likely of no real benefit.  I have only know personally three people who went to MD Anderson or Sloan Kettering CC as their local care was failing.  They spent a few days, were told that MD would do exactly what their local doctors were doing, and returned home.  And died.  I also knew years ago one guy who travelled to Emory, and one to Duke.  No benefit.  Of all of these individuals, one had prostate, one breast, two leukemia, and one a rare bladder cancer.  The premiere centers would have no doubt done as well as their local centers, just seemingly not better.

The personalization GK mentions renders local or regional care better, in my opinion.  It is very much like the university system, in which I worked and learned academia's mythologies.  Ivy schools pretend to teack better; they do not.  Often, they teach more poorly.  A given school might have the best professor in the world in this or that subject.  Except that no undergraduate will ever take a course from that person, and well may never see him or her.  Even graduate students may not interface with a 'world authority.'   Usually, these people don't even teach anyway; they are scholars-in-residence, doing research.  A good state university, in most cases, provides a better education.  A cousin sent one daughter to Boston College on a scholarship, the other daughter to Emory.  The daughter who attended Emory is weathy now, the daughter from B.C. is hungary.  The mom went to Kansas State, and is wealther than both daughters put together.

When I was in ICU decades ago, whenever a nurse would change a bandage, or a cath tube, or really anything, they would peel off stickers and place them on their shirts. By the end of a shift, they were half covered in these things.  I later learned that these were barcodes or something similiar, for billing.  It's like a hotel room, where bath towels and soap are extra.  My inpatient bill tooks months to compile, and when it went to my insurance carrier, they called me and said they could not pay it until it was reviewed by an independent auditordue to the amount. About a month later I heard that the audit was over and that the insurance carrier paid. I asked for a copy of the bill which they mailed me (this was befor e-mail): 60 pages, single spaced.

I looked at the first item at the top of Page 1 of 60. It was for "impatient care, ICU."  Same for the second line.  Except that the dates were for two days before I ever had the accident and was admitted.  TWO AUDITS had missed this, as had the Hospital Billing Department.  I called my insturance company and pointed it out to them. The adjuster said "forget about it."   Wow.  What was in the other 60 pages ?

When I was researching how to treat my prostate cancer, I mentined in passing to my N.P. that I wished I knew my medical oncologist's who had treated me for Hodgkin's view of my case (he was in no way involved in my prostate care). To my shock, he called the next day, to discuss my plans, and shared his thoughts.  I was amazed at his interest.  A few weeks later a consultation bill arrived in the mail, for our $150 phone chat.  I still appreciate their efficiency in getting my comment to him, and him calling me. He probably had no choice in the billing. I still regard him as a prince and a genius.  I can't imagine that much attention at the prestigious centers.  My breast cancer friend said the complex at MDA-Houston was a sprawling maze, and that the experience was unpleasant; sort of like a college freshman searching for his classrooms the first day of a semester. May she rest in peace.

Marriott or Trump Tower:  Both will have a clean bed and good cable, etc.  But the bills will be dissimiliar.

.

Anonymous user (not verified)

Max, I was asked to fill out a post visit survey by MDA. I mentioned my issues and was never really responded to in any meaningful way. I later found out that the group had a round table each morning where they discussed cases. A letter was drawn up which concluded I was in remission. The Dr I met with was a cardiologist, not an oncologist. I have never had heart issues. It was her last day there and she was arranging her move to another state and was assigned to inform me of the letter contents, as my assigned oncologist was busy. Of course the analysis recommended more expensive tests and bi-annual return visits. Also once you are on their mailing list you are constantly bombarded with requests for donations. My experience is that these fancy clinics do not have magic wands and in a place like MDA its very easy to get lost in the fray and allowed to wither. Also I had a peripheral issue with communications. I have hearing difficulty. That combined with the crowding, confusion and the fact that many, maybe most, of the staff were not native english speakers (chinese, hindi, spanish and vatious other accents) made it very very difficult for me. I earned my livlihood internationally and have travelled and interracted in almost 70 different countries. I lived overseas 12 years. So that is not an issue culturally for me, its more a practical issue. My life was on the line and I was less than happy with my situational awareness. Also I was alone. What I would describe as " noisy" and "crowded" grand central station atmospere in parts of the facility combined with the stress of cancer and difficulty hearing/understanding made it a most unpleasant experience. I actually felt more at ease at the Sook in Cairo. I would go back for very specialized well defined in advance treatments or studies/trials but could not recommend it for treatments available in a patient's local area. As I say, they do not, except in some very specific situations, have magic wands.

Anonymous user (not verified)

and wish you well.

Blindsided
Posts: 3
Joined: Nov 2016

it sounds like you have fought an AWSOME fight. Don't ever back off just get more aggressive as you see necessary. Perhaps your Ex should walk in your shoes and then say I didn't sign up for this.  My Hodgkins has only been in remission for 4 months but I have also had to do it on my own. Sounds like you need more medical attention, do whatever it takes. I do have insurance but the hospital did forgive my part of the bill by filling out the paper work for financial aid.

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