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Process of being diagnosed and worried.

dee_dee
Posts: 2
Joined: Nov 2014

Hello All,

My husband is the one who possibly has Lymphoma. 

Here is a bit of what has been happening to him. He has lost 65 pounds since June, initally started out as trying to lose weight. He started not eating as much and getting full with a few bites.

He kept just saying his stomach shrunk. Then he developed a cough that progressed. He has never had allergies. At this point he has had cough for 2 months. 

Finally October rolls around and I told him, please go to the doctors you do not look healthy. He did, his primary ordered a chest xray and told him to take benydryl and claritin and ordered blood work. 

Chest xray negative and his cbc was all over the place. He is anemic, wbc and platlets elevated. He also had been having night sweats along with chills sometimes. He wasn't fighting a bug either. 

My gut has been telling me its more serious, because I see him changing. I asked his primary to reffer him to a hemotologist. He was reffered. We just noticed he started getting low grade fevers at night as well. He fevers and sweats are now every night. 

A week ago he also noticed a hard bulge by his groin. We were thinking hernia from all the coughing. We didnt think swollen lyphmnodes. 

Finally he gets in to the hemotologist last Tuesday. She was ehhhh about him beginng reffered at first, wasnt sure why he was reffered to a GI doctor before her. 

Then she changed her tune when we told her all of his symptoms and how things have changed within the past 4 months. She blatantly said, more than likely you have a type of lymphoma.

He doesnt have a hernia it was a chain of swollen lymphnodes. She ordered a alot more blood work to rule out anything else it could be. Still sticking with the lymphoma theory. 

He has lost alot of muscle mass and is super fatigued all the time. His stregnth has all diminished. He is only 45 and does alot of manual work for a living. He is a work horse and litterally will work till he collapses. 

Within the past week since we saw her, he has gotten worse. He had a CT scan done yesterday and we see her this coming Friday.

At this point I'm wondering if the hemotologist/oncologist is moving to slow. If it is lymphoma and we are waiting to long. Should I just be patient or put in a call to her to ask whats going on? I know next is a biopsy. Just seems like things are going slow and he is getting worse. 

How fast did your doctors move on this?

Thank you!!

 

po18guy
Posts: 910
Joined: Nov 2011

Sorry to hear of this, but the signs do seem to point toward some form of lymphoma. However, nothing can be known with certainty until and unless an entire enlarged node is excised for biopsy. Even then, it is highly advised to have a different, major pathology lab perform a second review of the biiopsy sample, as lymphoma can be extremely difficult to identifiy. The first lab completely missed the malignancy in my case. 

Be assured that lymphoma is treatable at all stages. I have been stage IV at least twice, so that should not overly concern you. In this regard, lmphoma is completely different from all other cancers.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

dee dee,

It sounds like your hub MIGHT have Hodgkins, but do not stress at this point.  I was diagnosed with massively advanced Stage III HL (more widespread than most cases of Stage IV), but did not receive treatment for about 3 months after the first CT....waiting to see a hematologist, etc. etc.   Delay is the name of the game. With virtually all Lympomas, a wait is of little or no relevance.  Night sweats and low-grade, off-and-on fevers are more common in HL than in NHLs. I had night sweats so bad for months that my wife had me sleep on a beach blanket, and we put a bath towel on my pillow, but both still got soaked nightly. We did not know that most night sweats are due to HL.....

Do not assume anything at this point. We are here when he gets a definitive diagnosis.  Almost all lymphomas are beatable and/or controllable.  Do not dispare !  We are 100 winners who know that this is beatable,

max

JeaniNOW1's picture
JeaniNOW1
Posts: 14
Joined: Oct 2018

Dee Dee, I totally understand the frustration of waiting for the medical wheels to turn and produce the various diagnostics required to move toward treatment.  I felt like I was going crazy, waiting... and I realize now that actually the wait wasn't as long as it seemed.  After antibiotics, X-rays, CT scans, a biopsy, and a PET scan, it was finally confirmed that I have non-Hodgkin follicular lymphoma about a month ago, and I've had my first pair of chemo/immunotherapy infusions two weeks ago.  I feel so relieved to finally have them doing something to STOP the growth that was continuing.  Already, the one external tumor has shrunk drastically.  LYMPHOMA IS TREATABLE!  Good luck to you and your hubs!

po18guy
Posts: 910
Joined: Nov 2011

I actually expected to hear the diagnosis of cancer. When I found a tumor, I knew what it was - some things you just know. Yet, my brand new PCP, and later a vertan oncologist and experienced pathologist all said "No."

Instead, I got anxiety meds. Which I still have. Ten years and three cancers later.

Hang in there! Medical science is zeroing in on lymphoma. Those of us who post here are evidence, if not proof, of that. 

dee_dee
Posts: 2
Joined: Nov 2014

Thank you for the respones.

My husbands CT came back, the doctor called him Tuesday to say he had lymphoma. She said it was aggresive and bulky. He has nodes in his chest, back area, groin and stomach. She said there are very large nodes all in his stomach and thats why he is in pain. He had a bone marrow biopsy yesterday. Which was awful for him. He can handle pain to. She also thinks its in his liver.

We are seeing her tomorrow and she will be giving us more info. She may hospitalize him to get his port and surgical biopsy done asap. We are also needing a PET scan asap. 

I have been down this road with my mom, she had breast cancer and recently tonsil cancer. So, its not new to me. Just difficult when its my husband and having kids see their dad sick is hard. 

Again thank you for responding to me. 

po18guy
Posts: 910
Joined: Nov 2011

No matter how bulky, or at what stage, lymphoma tumors seem to melt away once trreatment begins. That is consistently reported.

illead's picture
illead
Posts: 823
Joined: Aug 2012

Unlike most cancers, Lymphoma is usually tamed quickley once treatment starts.  My husband was Stage 4 (staging is different with lymphoma, more of a measure to see how far along it is not to see what the prognosis is, the outcome will usually be the same no matter the stage).  Anyway by the time he was diagnosed, his blood counts were extremely low and he was failing fast.  He started rapid improvemnt after his first chemo and steadily got better and reached remission.  As Po said that is usually always true.  I know how scary it is right now and I know how hard it is to see your husband sick, but please believe that this is most likely temporary and he will bounce back.  Please let us know what type of lymphoma he has and those who have that type or knowledge of it can help you further.  Hope this helps ease your fears a little.

Hang in there,

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3074
Joined: May 2012

Dee Dee,

No CT or even PET absolutley confirms a Lymphoma diagnosis, but it sounds like his oncologist was pretty safe in making this call.  There is not much else it could be, given the CT results.

His CT sounds even worse than mine was.  A general surgeon was the first person to go over my initial CT, and he said that I was ravaged by Lymphoma, but added that "the only other thing that looks like this on a scan is AIDS in a person about to die."   I responded that I was at NO risk of any kind for AIDS, and the biopsy did come back as Hodgkin's.  

The next step, as you note, is the port and the biopsy. A correct biopsy is critical, because differing lymphomas require very different chemo drugs; what works for one strain is commonly usless on many others (there are over 60 varieties recognized by the World Health Organization  -- 5 forms of Hodgkin's, and over 50 forms of Non-Hodgkin's). Obviously, therefore, most new cases of Lymphoma are NHL varieties. 

As everyone has already stated, even Stage IV Lymphoma is ordinarily brought under control quickly.  The treaments can be extremely harsh, but life-saving.  He will almost certainly begin a multi-drug chemo regimen, probably for six months as soon as the strain is identified.   In nearly all such cases, surgical removal and radiation are not utilized, but in cases of extreme bulkiness, or when organs are being pressed upon, occasionally they are.

max

po18guy
Posts: 910
Joined: Nov 2011

In my case the stats sound epic, ominous, even tragic, but ultimately were not. Stage IV-B at diagnosis. "Innumerable" tumors - the pathologist stopped counting at 50. Had some in my marrow, as well. Two relapses, a mutation into two subtypes plus MDS, a marrow cancer from all of the treatment. Probably 100 tumors total. Three cancers simultaneously in 2015. Yet, here I am with no cancer on the CT.

So, chin up!

Evarista
Posts: 229
Joined: May 2017

Dear Dee, so sorry that y'all are going throught this.  Your husband's clinical roller coaster sounds a lot like my own.  It was a full 2.5 weeks between when I was first ordered to the hospital for blood transfusions until I got my diagnosis of DLBCL and started chemo.  In between, multiple transfusions, failed BM biopsy, repeat BM biopsy, CT scan, sonogram, LN biopsy.  Then a rapid decision to start chemo ASAP and putting in PICC line so no waiting for port procedure.

I was very far down the rabbit hole by then, in complete bone marrow failure due to HLH (hemophagocytic lymphohistiocytosis: basically your own cells destroying each other) and tanking badly.  But the chemo (DA-R-EPOCH) worked quickly enough and I am now 17 months out from done and lymphoma free. So, hang in there.  

There will be variations on how it goes for your husband (PICC vs. Port; CHOP vs. EPOCH vs. ???; inpatient vs. outpatient, etc.), but whatever it is, there will be someone here who has been through it.  Please do not hesitate to ask questions.  Do be sure that you get the information that you need from his medical team every step of the way. If you have questions or do not understand something, ask them! And always get printed results.

Best of luck going forward.

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