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In limbo *long

Sferguson
Posts: 3
Joined: Apr 2017

I'm New to this forum and scared.  I am 36 female, married with 2 little ones.  Doctors thought I had MS for months and put me on pain pills.  Well now I have swollen lymph nodes in my neck (right side) and behind my ear. Within a couple of months I went from being able to clean house everyday to extreme fatigue that will not go away with resting, along with severe drenching night sweats, low grade fever, and just plain yucky.  I finally went in to see my doctor who is awesome! She was concerned with my symptoms and I have an ultrasound scheduled for May 4th.  (mind you, I have been sick for 1 year off and on)  but this is a different type of sickness that I am feeling. I feel as though my whole body is toxic.  

I'm keeping this post short and I was wondering if this might be a good place to talk.  

(My husband says that I'm fine and I just need to exercise more but I can barely finish anything I start because I'm so worn out)  I feel like he isn't going to listen to me until I get a diagnosis.  

Feeling...sigh...lonely and worried

Sferguson

PBL
Posts: 232
Joined: Jul 2016

Sorry you feel ill and misunderstood at home...

Any particular reason why doctors initially diagnosed you with multiple sclerosis?

PBL

Sferguson
Posts: 3
Joined: Apr 2017

I was having on and off Neuro conditions for 1yr.  Doctors are now thinking it is something else that caused Neuro conditions because I had to frontal lobe seizures 2 months ago and vertigo with numbness in my face and arm rightsided. MS runs in my family....but also a lot of different cancers.  So I think they just went with MS because 4 months ago my lymph nodes weren't all swollen. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I'm glad you're getting an ultrasound soon as your symptoms are concerning.   My husband was the same way.   In fact he still not that great about it.   In the beginning he was terrified and couldn't talk about it or go there.   He did throw himself in research and found the best doctors all over the country and helped me navigate that end.   He traveled with me to Boston and had a list of questions to ask the doctor independent of my own.   There are times when I think his head is in the sand and he's in denial but that's just him.   I'm not the type of person who  accepts help easily and I'm too darn strong for my own good because on days when I really needed strength he didn't know how to give it to me as it was foreign to him.

We are all different,  My counselor told me that I needed to make my feelings and concerns crystal clear as I expected him to read my mind.   For example on the day of my first pet scan I drove myself there because I insisted to do it alone but I'm  terribly claustrophobic.   After it was over I was angry with him because he didn't take me.   Now he tries to go to all my doctor visits with me and it makes me crazy!

I very much hope that there's another reason for your symptoms.   Clearly communicate with your husband and help him navigate this journey with you.  

 Best of luck and keep us posted.

 

PBL
Posts: 232
Joined: Jul 2016

With such symptoms as those you describe, one might expect anyone to take your complaints seriously... 007 may be right when she points to possible denial and fear as an explanation to your husband's attitude, and of course it could be useful to sit down and discuss your needs and expectations frankly once you have a definitive diagnosis and he cannot dismiss your health issues any longer.

Your getting an ultrasound soon is a good thing, but in the event doctors believe that lymphoma is the likely cause of your troubles, keep in mind that the path to diagnosis will be longer than that.

Do keep us posted.

Wishing you patience and good luck,

PBL

po18guy
Posts: 1099
Joined: Nov 2011

There are 68,069 known human illnesses and conditions. Only about 125 of them are cancer. I think it more likely that you have some form of neurological or autoimmune condition. Nevertheless, a biopsy of one of the lymph nodes will help to direct diagnosis, if doctor is OK with that. It is too early to think cancer.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

SF,

The beauty of this Board is that it's like walking the mall: a wide assortment to choose from. While the jury is out on your diagnosis, it sounds very much like Lymphoma to me: not many things other than Lymphoma and menopause cause heavy night sweats. The extreme fatigue is also a hallmark of the disease. But speculation is of no benefit. Only scanning and a biopsy will be definitive.

People, including even spouses, have vastly differing responses to a cancer diagnosis. Hopefully, following a certain determination of what your issue actually is, your husband will become more reasonable and supportive.

max

 

most likely to be Lymphoma to me

po18guy
Posts: 1099
Joined: Nov 2011

From the Wiki on night sweats: "One of the most common causes of night sweats in women over 40 is the hormonal changes related to menopause and perimenopause. This is a very common occurrence during the menopausal transition years."

From my experience, night sweats were accompanied by spiking fevers, up to 102 or more degrees.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

did I think I had cancer...

I noticed a bump in my right jaw which I tried to ignore. I had another in my right breast that was protruding but I had seen doctors for over ten years for that one and they laughed at it and saying it was nothing so I ignorantly trusted them.  I was extremely tired (painfully tired to drive a car) but I have two children and a very busy lifestyle so I blamed it on that. I also experienced night sweats but I thought I could be menopause. I lost a little bit of weight, must have been because I was busy. My skin also itched but I blamed it on being dry. I was also extremely cold all the time but then there was the polar vortex. I had an excuse for everything except for the protruding lymph nodes.

Biopsy will determine as po18guy mentioned.  Don't let anyone discount your sysmtoms like my laughing doctor and get to the bottom of it.  Best of luck. 

As for your husband, if he's anything like mine he's terrified.   My husband loves me very much but he can't consider it for one second.  He helped me a great deal, the best he could but it was as painful for him as it was for me.

Best of luck....

 

po18guy
Posts: 1099
Joined: Nov 2011

I hear you! Due to family history on dad's side, I expected cancer. When I found a tumor behind my left ear, I somehow knew "This is it", so off I went to doctor, which was very non-man like. Brand new doctor to me, as my internist of 25 years had retired the month before. What I got was antibiotics and anti-anxiety meds (which I still have). I had to lead doctor through the diagnostic process, finally determining on my own that my immune system had failed. So, I went to my ENT and it all followed from there. A very non-standard cancer journey, but I am used to that.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

What can I say, I'm speechless.  Your experience was insulting (anxiety meds), disheartening and terrifying.  Seriously, I'm shocked by the scripts.  My doctor laughed at my repeated scan, she told me we need not to keep looking at it.  She is the lead doctor in all our area.  I asked her why was it growing and still here?  She replied with an I don't know.  You must have an infection?  That's a pretty tenacious infection......

Moron I say.  Sorry but it makes me crazy still. 

Of course for every bad call there are many brilliant ones and fabulous doctors we learn to trust.

All my best.

ShadyGuy
Posts: 555
Joined: Jan 2017

I  had a similar experience. I was very sick for about three years and all my symptoms were brushed off and in one case even laughed at. When I asked a doctor if I might have CLL or lymphoma, she literally laughed and said "so now youre a doctor huh?". She recommended counseling and anti depressants as "some people just like to worry". I was also treated for RA which I did not have. 3 months later after an MRI of my back the radiologist noted swollen lymph nodes "a possible sign of CLL or lymphoma" and recommended further investigation. The orthopedic Doctor said it was probably nothing to worry about but I should probably mention it to my GP  "Next time you see her".  A sweet young PA pulled me aside and said "go see an oncologist now!" She saved me. I did and was diagnosed with Stage IV FNHL, extensive bone marrow involvement, massive amounts of scar tissue. I had obviously had it a long long time. Trust yourself and don't hesitate to question or change doctors. They are just people like the rest of us and far, far from infallible.

Sferguson
Posts: 3
Joined: Apr 2017

The tests that I have had are CT scan, MRI and MRA of brain (no abnormalities found)

blood work includes; 

Thyroid...normal

Complete hormone levels...normal.

RA... negative

Vitamins D...on low side

Vitamin B12...on low side

Calcium...high

Anion gap...continues to lower

Magnesium...low

WBC..normal

RBC...slightly high (recounted then fine) confused by this

These tests were done approximately 4 months ago.

Yesterday I was in bed all day with 100.0 fever.  With sweats and cold chills.  When I have my night sweats I do have an elevated temperature.  I can't stand these night sweats...and my armpit is extremely itchy and swollen (new).

Thank you all for responding to my first post!

Couple more days and I will have my ultrasound.

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

SF,

With your updated data, I am now not of the opinion that Lymphoma is probable. In fact (as a layman) I would say it is highly improbable. The recent CTs are much more authoratative than any Ultrasound, but by all means, do get the ultrsound done.  If you had no evidence of lymphoma four months ago (via CTs), the liklihood that it is now causing horrible nightsweats is extremely small -- Lymphoma just doesn't move that fast.  And, "nightsweats" are the prime indicator of what are called "B Symptoms," associated with aggressive disease.

The normal hormonal results further confuse things. It's why they are doctors, and we are not...

max

yesyes2
Posts: 592
Joined: Jul 2009

.Hello SFerguson,

My lymphoma was very strange and very rare, only around 200 cases at the time of my diagnosis.  I was diagnosed from an ultrasound to check my kidneys as my kidney function tests were elevated for a long time.  Not abnormal if as my primary said, I was a 200 pound man, not a 125 lb woman.the elevated kidney function had nothing to do with the cancer.  I was told there were too many enlarged lymphnodes to count.  Between the ultra sound and my biopsy I could see and feel the lymphnodes enlarging in my stomach, all nodes were in my abdomen.  They actually started me on Rituxan prior to a complete diagnosis and becore a PET scan because of this.  If you have enlarged nodes they should be able to see them on the ultra sound.  As you know, heavy drenching night sweats are a B symptom for lymphoma.  But they could also be early onset menopause, but unlikely as I think you said you had hormone tests done.  

I hope that they will be able to figure out what is going on with you  I know how very difficult it is not knowing.  Sometimes not knowing is worse because once you have a diagnosis you can get into fight mode.

Max I think the CT scans were on the brain when they were looking for MS.  Please correct me if this is not the case.

Hoping for the best.  Please keep us informed on the ultra sound results.

Leslie

 

 

wolfscream
Posts: 1
Joined: Apr 2017

Thank you all for your insightful thoughts. would like to share my story with you, and also trying to encourage @sferguson to push her doctors. I am a 36 year old male, and live in the suburbs of Washington DC. have two toddlers (boy 3.5 years old and girl 1.5 years old) and I am lucky ******* to have my mom help us raise them, by living with us. she is 59.

I have a neck shaped turkey like, and was weighting 210 pounds back then. I am 5'9.  around March 6 noticed a mass in my left side of the neck and I called my doctor right away. we had recently moved, so had to drive for an hour to where the doctor was, but they got me in right away. she checked me, and I shall share: I am the type that would rather deal with the problem here and now, than let it go. Its not good, nor easy most of the time, because some things one just needs to let them go, especially in a relationship, and I just cant do that. anyways - the doctor immediately after seeing me issued a SAT CT Scan, which was done the same date and showed a mass of ~ 5.4 3.9 and 1.5 in my left side neck. In the same day, the same doctor booked me an appointment with an ENT in the same area, who checked the CT scan out and did a fine needle biopsy. Its worth noting that I had no symptoms, and it still remains the same. The ENT was very busy, but asked me to set an appointment in a week, and he was not going to deliver any results over the phone. It was a very very long week. have to add, I do a quite stressful job, and had to share with my co-workers what I was going through, so they could cut me some slack. when we saw the ENT back, the FNA came back, clean - which really meant that it was un-conclusive. the ENT scheduled an incisional biopsy 2 days later, results to which were also delivered in person 8 days after the surgery. the preliminary pathology report hinted to diffuse large b-cell lymphoma, but were waiting on the final report. with that in hand, and by then prepared and used for the worst, I booked the first oncologist that was available. she said was waiting for the results from the pathology report (staining) but took some bloodwork and recommended to schedule a bone marrow biopsy and a PET. I did schdule both around week from that day, and once I got home, started my research to find best oncologists around where I live. I did have choices, but they were all busy, could not see me for a week or two.  I kept calling and calling and finally got hold of an ocologist associated with one of the major hospitals nearby where I live (they also had the pathology), and another one at Johns Hopkins - 3 days apprat from each other. meanwhile, I shared the news with my co-workers and friends, and they started looking around for good doctors. one of them recommended me NIH/NCI. First, I met with the oncologist nearby where I live. He spent around 90 minutes with me. I asked a lot of questions, and took thorough notes. He also told me that I had DLBCL, which as I later discovered was the case, but he didnt know that for sure from the pathology report. He wanted me to start with R-CHOP and also offered to do the BM and put a port on me. He also ordered FISH studies to be done on my pathology (which took 3 weeks). This was even before doing the PET scan. Then, I met with John Hopkins oncologist. She spent 120 minutes with me, and was extremely thorough and very factual. Pending their pathology (apprently everyone does their own) and fish studies, she threw in the option of DA-EPOCH-R in patient with PICC line, she didnt see the need for a port. NIH would not see me until the full pathology report was available. they also wanted to have my pathology as well. I spent countless hours with the hospital trying to get them going to sending the pathology to NIH. lots of bureaucracy but some good people there as well. one day prior to seeing NIH, I did the PET scan. to my luck - it showed only in the neck, nowhere else. at NIH, I met with some of their fellows that specialize in lymphoma - really sharp cats, to the extreme I shall say. top notch service from nurses and physicians. their pathologist (best in the world was told by the oncologist at Johns Hopkins) had sent some preliminary results as this was a GCB DLBCL. they still needed to know the fish studies... they offered me to participate in a trial with DA-EPOCH-R which after some thought (1 day) I accepted. They did BM biopsy, LP, and another CT scan of the whole body, not just neck... to have a baseline before the treatment. what I found very interesting, and almost disturbing was that both doctors I consulted with either ignored my note to them or were not so happy with my choice of going to NIH. while I understand business, this is not business as usual. in any case, as we speak, my fish studies, BM, LP and CT came back clean with neck being in the only place, and I have already finished my first session of EPOCH-R. the days after were tough, but I kept chin up, walked for an hour every day, and I am very confident that will beat this. its rough, and scary, especially when you have kids where the thought of not being able to raise them is just horrible, but as someone said here - cancer is luck, and luck can strike many different ways. we are humans: we live, we die. we need to make sure that we live life (which I have not done 100%) so this should give us a different prospective in life. I am working on joining a joga class and have completely changed my eating habits (always ate home cooked meals, but never salads, ate red meat a lot, drank 1-2 drinks a night, and love deserts) all that is gone. no more sugar, no more red meat, no more alcohool... and I will do my best to keep it this way. Chemo is making me tired, but that is to be expected.

 

In another note - on the significant other - while I think my wife is great, I still struggle with the fact that she doesnt seem to understand the situation we are under. While I dont need much help from her, would love for her to take charge and run things - but she just doesnt do it. This upsets me. I am in days 8-14 of chemo where I need to stay away from everyone, and she was there with me when the nurse said: dont be close to even your kids... they are a germ factory. also my kids are going through a flu. meanwhile she asks me to go and lay down with my son to put him to sleep. I said I cant, and she insisted... I snapped and made it clear that she was hurting my feelings and also being incosiderate of my situation.

Another episode: I had some friends come and spend some time with me today. she comes home (was not here), and asks: did they smoke here, inside the house? How can you ask someone with cancer if people smoked inside the house where his kids stay? someone would smoke in the house over my dead body...

So, the feeling I have is: I am not sure how much she comprehends the situation here.. While I am strong and a fighter, that doesnt mean that I dont need support, and also for her to think deeper about the situation.

Keep fighting, hope dies last.  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Wolf,

Your diagnostic path was rough, but not too  different from what many experience.  From initial detection of symptoms until first infusion is often a long, long time.  Usually getting an ENT involved adds between a month to a year: I like to say that they "antibiotic Lymphoma patients to death."  Apparantly the ENT you saw was more expeditious.  From my initial diagnosis of huge nodes pressing on my heart until my first infusion was around two months, and that was with me rushing people as much as I could.  We are all fortunate in that usually an additional month with Lymphoma is close to irrelevant, except with the most aggressive strains that are already late-stage.    The only thing I would have done differently in your case is that I would have demanded a cathiport; the patients whom I have known with a pic wished that they had a port instead.   In fact, I would request a port now -- if I were you. It may be that you do not find the line bothersome.   Installation of a port is a very brief outpatient surgery.

Until I got to the bottom of your post I was of the view that you were a single parent.  Spouses handle the diagnosis of cancer in their partner very differently.  Everything from saintly sacrifice and support to abandonment (literally leaving).   Hopefully she will learn, adapt, and grow in her understanding.

You are well-informed and demanding the best from the doctors. You should walk away from this cured,

max

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