What were your lymphoma symptoms?

tgyphilly

I have nodular lymphocyte predominant HL, in a "stable" state... meaning it's not gone, but also not progressing all too quickly.  For the past year, I have had symptoms that include random itching, especially in extremities and in and around my eyes (weird), fatigue, and just a general feeling of being unwell, which is really hard to describe other than that.  

What were yours, if you had any?   My doctor is unconvinced that my symptoms are related to my recurrent/persistent lymphoma, and is not eager to pursue a second line treatment plan even though my PET/CTs are showing increaded FDG activity, albeit all nodes showing heightened activity are coming in with a SUV of less than 10. 

If I had a reference point for symptoms other than the classic B symptoms (weight loss, fatigue, fever, drenching sweats), it would be helpful for me to at least know that I'm not going crazy, and maybe I can share with my physician so he knows that there lymphoma symptoms don't necessarily fit neatly into a box.   Please share if you can.   Thanks.  

Max Former Hodgkins Stage 3

Symptoms

tg,

I had NLPHL also.  It is an indolent Hodgkins strain, pretty rare, constituting less than 1% of all new lymphoma diagnoses annually.   It is quite similiar to the NHL follicular disease.   I was initially diagnosed with extremely widespread disease, Stage III.   Tumors in heart area, both axillary (armpits), spleen, pelvic area, and all around lower neck and both lungs, as well as compressing the superior vena cava and esophagus.   At diagnosis, I had never felt an enlarged node in my life (to the touch).

I ended treatment 10 years ago, and still have serious, almost constant itching, which is symptomatic of the disease, and I continue with profound weakness.  But I have no active disease that can be identified.  Also, HL commonly will cause burning in the nodes with alcohol consumption.   Fairly rare, but a known HL symptom.  I never drink liquior, but even one beer will often cause this for me -- just something to be aware of also.

I suspect the itching will not leave.  It may or may not reflect active disease.  I am told there is nothing to do for it.   Benadryl does not help.  I show NO skin irritation, no rases.

 

I wish I could be more optimistic in this reply,

max

tgyphilly

Max Former Hodgkins Stage 3 said:

Symptoms

tg,

I had NLPHL also.  It is an indolent Hodgkins strain, pretty rare, constituting less than 1% of all new lymphoma diagnoses annually.   It is quite similiar to the NHL follicular disease.   I was initially diagnosed with extremely widespread disease, Stage III.   Tumors in heart area, both axillary (armpits), spleen, pelvic area, and all around lower neck and both lungs, as well as compressing the superior vena cava and esophagus.   At diagnosis, I had never felt an enlarged node in my life (to the touch).

I ended treatment 10 years ago, and still have serious, almost constant itching, which is symptomatic of the disease, and I continue with profound weakness.  But I have no active disease that can be identified.  Also, HL commonly will cause burning in the nodes with alcohol consumption.   Fairly rare, but a known HL symptom.  I never drink liquior, but even one beer will often cause this for me -- just something to be aware of also.

I suspect the itching will not leave.  It may or may not reflect active disease.  I am told there is nothing to do for it.   Benadryl does not help.  I show NO skin irritation, no rases.

 

I wish I could be more optimistic in this reply,

max

Itching

Thanks Max.  Have you ever learned what the biological pathway is for the itching?  I.e. why does the body respond to the HL with an itching response?   Thanks again

po18guy

Got a second opinion?

NLPHL is in a more gray area than in the past. The thinking now tends toward it being more of an actual B-Cell Lymphoma than Hodgkin's. I would most certainly get a second opinion, preferably from a hematologist at a National Cancer Institute designated comprehensoive cancer center (real mouthful there!). Those centers employ the best and brightest, possess the latest in research data and conduct clinical trials that are helping to change the lymphoma treatment landscape. Find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers

That is "if" you are not already at such a center. Going to one has saved my life several times over.

Max Former Hodgkins Stage 3

tgyphilly said:

Itching

Thanks Max.  Have you ever learned what the biological pathway is for the itching?  I.e. why does the body respond to the HL with an itching response?   Thanks again

Cause

Itching generally is believed to be caused by histamines in the blood, which makes it odd that Benadryl does not help me today.

The other very common cause of all-over, chronic itching is liver disease, so review your enzyme results.

tgyphilly

po18guy said:

Got a second opinion?

NLPHL is in a more gray area than in the past. The thinking now tends toward it being more of an actual B-Cell Lymphoma than Hodgkin's. I would most certainly get a second opinion, preferably from a hematologist at a National Cancer Institute designated comprehensoive cancer center (real mouthful there!). Those centers employ the best and brightest, possess the latest in research data and conduct clinical trials that are helping to change the lymphoma treatment landscape. Find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers

That is "if" you are not already at such a center. Going to one has saved my life several times over.

Second Opinion

Thank you Po Guy.  I'm at the Hospital of the University of Pennsylvania, which is one of the best in the world for blood malignancies, but am leaning toward getting another look anyway.  May head to Sloan Kettering in NY.  

po18guy

tgyphilly said:

Second Opinion

Thank you Po Guy.  I'm at the Hospital of the University of Pennsylvania, which is one of the best in the world for blood malignancies, but am leaning toward getting another look anyway.  May head to Sloan Kettering in NY.  

You're in good hands

Nevertheless, lymphomas are a strange cancer. They originate in cells that developed in the marrow - from pluripotent cells. That may have something to do with the incredible variation we see in lymphoma. It seems that, to a greater or lesser degree, each lymphoma is individual, unique. Since no individual or organization possesses all research and all possible treatment strategies, another set of eyes on your case would certainly be prudent.

Samiam1114

Hey All! My name is Samantha, i'm 29 & was just diagnosed with Hodgkin's Lymphoma after a biopsy I had on October 29, 2020. It's VERY scary to say the least. I get married on Saturday, November 14 & this is stressing me out to no end. I am glad I have something to look forward to, at least. My body started itching today & there is a burning sensation as well. Has anybody else had this? I go to the Hematology Oncologist on November 19th for more answers & to figure out the plan.

Samiam1114

Max Former Hodgkins Stage 3 said:

Cause

Itching generally is believed to be caused by histamines in the blood, which makes it odd that Benadryl does not help me today.

The other very common cause of all-over, chronic itching is liver disease, so review your enzyme results.

Itching

My itching started today & with the burning sensation. I don't know when it's going to stop, if ever.

po18guy

Samiam1114 said:

Hey All! My name is Samantha, i'm 29 & was just diagnosed with Hodgkin's Lymphoma after a biopsy I had on October 29, 2020. It's VERY scary to say the least. I get married on Saturday, November 14 & this is stressing me out to no end. I am glad I have something to look forward to, at least. My body started itching today & there is a burning sensation as well. Has anybody else had this? I go to the Hematology Oncologist on November 19th for more answers & to figure out the plan.

Itch can have various causes.

I have had two lymphomas and never itched. Neither was in the Hodgkin's category, but I had the usual lymphoma symptoms in 2008 and completely different symptoms in 2014-2015. Those were all autoimmune reactions to a type of 'cytokine storm' that the second lymphoma is known for. However, if you are under as much stress as it seems, itching can be a pure product of stress and anxiety - along with about 100 other symptoms. I might consider speaking with doctor about something to take the edge off during this most stressful time of your life.

Samiam1114

po18guy said:

Itch can have various causes.

I have had two lymphomas and never itched. Neither was in the Hodgkin's category, but I had the usual lymphoma symptoms in 2008 and completely different symptoms in 2014-2015. Those were all autoimmune reactions to a type of 'cytokine storm' that the second lymphoma is known for. However, if you are under as much stress as it seems, itching can be a pure product of stress and anxiety - along with about 100 other symptoms. I might consider speaking with doctor about something to take the edge off during this most stressful time of your life.

Itch

Hi Po18Guy,

 

Thank you! I'm going to Walmart to see if benadryl will work. It's hard not to stress. I'm trying to just breathe & accept it. I need to stop googling things ?‍♀️ That is my biggest problem. Have to take it day by day & just wait for my Oncologist appt.

 

Are you in remission now?

Samiam1114

ShadyGuy said:

As odd as it sounds ....

one of my relapse symptoms is itching on my face, mostly when I go to bed. Sounds odd but my doc said he has seen it as a symptom in several of his patients. Another symptom is pain in hips and back which immediately goes away with lymphoma treatments. So far no biopsy this time round and no lab report that says I relapsed (only CT) so, according to Po, I can't possibly have relapsed. Must be my imagination. If I stay away from the doctor and refuse biopsy then I should be ok. Can't possibly be cancer.

Itch

Hi ShadyGuy,

Better to be safe than sorry though! Do you have any swollen lymph nodes? I'm itching as we speak, it doesn't go away & it driving me crazy. It could be a combo of stress too!

ShadyGuy

Samiam1114 said:

Hey All! My name is Samantha, i'm 29 & was just diagnosed with Hodgkin's Lymphoma after a biopsy I had on October 29, 2020. It's VERY scary to say the least. I get married on Saturday, November 14 & this is stressing me out to no end. I am glad I have something to look forward to, at least. My body started itching today & there is a burning sensation as well. Has anybody else had this? I go to the Hematology Oncologist on November 19th for more answers & to figure out the plan.

As odd as it sounds ....

one of my relapse symptoms is itching on my face, mostly when I go to bed. Sounds odd but my doc said he has seen it as a symptom in several of his patients. Another symptom is pain in hips and back which immediately goes away with lymphoma treatments. So far no biopsy this time round and no lab report that says I relapsed (only CT) so, according to Po, I can't possibly have relapsed. Must be my imagination. If I stay away from the doctor and refuse biopsy then I should be ok. Can't possibly be cancer.

ShadyGuy

Samiam1114 said:

Itch

Hi ShadyGuy,

Better to be safe than sorry though! Do you have any swollen lymph nodes? I'm itching as we speak, it doesn't go away & it driving me crazy. It could be a combo of stress too!

This time ....

my doc thought he found some very small swollen nodes in my armpit and groin. They did not show up on the CT but the original area deep in my chest shows activity. In my first two episodes, the only palpable node was prior to my original diagnosis and on my right shoulder blade. Another symptom is low WBC, fatique, leg pain, sore joints, insomnia etc. Also occasional night sweats. Sorry for being so sarcastic in my last post. I have sent my CT to Duke for a second opinion. My opinion is that we should always be cautious if not skeptical.

Samiam1114

ShadyGuy said:

This time ....

my doc thought he found some very small swollen nodes in my armpit and groin. They did not show up on the CT but the original area deep in my chest shows activity. In my first two episodes, the only palpable node was prior to my original diagnosis and on my right shoulder blade. Another symptom is low WBC, fatique, leg pain, sore joints, insomnia etc. Also occasional night sweats. Sorry for being so sarcastic in my last post. I have sent my CT to Duke for a second opinion. My opinion is that we should always be cautious if not skeptical.

Symptoms

No worries at all! I understand completely. Yeah, that was definitely a smart idea! Hopefully Duke gets back to you sooner rather than later. Honestly, my biggest worry is if i'd have to do Chemo & lose my beautiful hair & the cost for it all. May I ask how old you are?

ShadyGuy

Medicine today

If you lose your hair it will return! I am old enough for Medicare and have an excellent Medicare supplement through my wife's employer. Cost is a big concern, no doubt. But be sure that lymphoma is very treatable with a 10 year 50% survival rate and I personally know a man who was disgnosed over 30 years ago. Treatment is also improving rapidly. The future is promising. But be aware that our medical system is in chaos so be well informed and don't be reluctant to ask questions or get second, even third opinions. Healthcare is an industry and has to make money to survive. That is as it should be. But don't permit them to to prescribe unnecessary or duplicate tests. The profit margin on scans for example is enormous. The incremental costs of using a CT scan are miniscule. Once paid for, the equipment is almost pure profit and is needed to make up for huge losses in other areas. More scans also provide legal cover for doctors. I understand both sides of that. My neice is an attorney who specializes in defending the medical industry, mostly doctors, in malpractice litigations. Some unscrupulous patients file lawsuits simply to try to strike it rich. It is understandable that doctors are defensive in how they practice. Its totally understandable. Most doctors are dedicated to their patients well being but still must be defensive. Trick is to navigate these potholes. Try to find a doctor you are comfortable with and trust him/her. Trust but verify. You will do well. Enjoy life and try not to dwell on it. Easier said than done.

Samiam1114

ShadyGuy said:

Medicine today

If you lose your hair it will return! I am old enough for Medicare and have an excellent Medicare supplement through my wife's employer. Cost is a big concern, no doubt. But be sure that lymphoma is very treatable with a 10 year 50% survival rate and I personally know a man who was disgnosed over 30 years ago. Treatment is also improving rapidly. The future is promising. But be aware that our medical system is in chaos so be well informed and don't be reluctant to ask questions or get second, even third opinions. Healthcare is an industry and has to make money to survive. That is as it should be. But don't permit them to to prescribe unnecessary or duplicate tests. The profit margin on scans for example is enormous. The incremental costs of using a CT scan are miniscule. Once paid for, the equipment is almost pure profit and is needed to make up for huge losses in other areas. More scans also provide legal cover for doctors. I understand both sides of that. My neice is an attorney who specializes in defending the medical industry, mostly doctors, in malpractice litigations. Some unscrupulous patients file lawsuits simply to try to strike it rich. It is understandable that doctors are defensive in how they practice. Its totally understandable. Most doctors are dedicated to their patients well being but still must be defensive. Trick is to navigate these potholes. Try to find a doctor you are comfortable with and trust him/her. Trust but verify. You will do well. Enjoy life and try not to dwell on it. Easier said than done.

Medicine

Thank you ShadyGuy! Much appreciated! Yes, I have to make sure they don't do another biopsy. I hope just a PET scan to see if it spread. Yes, thankfully i'm still working & feel okay so that gets my mind off of things. I wish you the best also! Please keep us updated!

GGc0ok

Hi Sam I’m GG

---

Hi Sam nice to meet you.  My story is on "Biopsy this next week". 
My symptoms are swollen glands at collar bone also under armpit. Started getting a cold virus beginning of Oct.  Doctor wanted me tested for COVID.  It was Negative. I kept feeling worse so he prescribed an antibiotic for an infection. Amoxicillin clavulanate which was pretty strong. Knocked me for a loop for 10 days. Doctor ordered an additional COVID test again Negative. First one on the 5th second one on the 16th of Oct. Urgent care urged me to go to ER which I did.  They did a battery of tests Over several hours. The last test which was CT with contrast indicated lymphoma.  I've met with the Oncologist had biopsy done and more lab. Diagnosis CLL/SLL. Next will be Pet Ct which will be next week followed by Oncologist appt.  Doctor said very slow growing. I said can't we just Bombard the ****?  We need to wait for Pet and Fish biopsy results. I may or may not have treatment. 
I didn't have fever, didn't have night sweats, I've lost 8 lbs, certain criteria he said I don't have.  I'm feeling my enerby coming back and appetite back.  I did feel extremely tired.  I still get tired but no way like last month. 
He said to me I'm not going to tell you not to worry because you probably will, but I will say don't lose sleep over this.  Im 72 years old, female baby boomer 

Im concentrating on the positive. Will fight with all I've got

As far as my hair goes I color it I'm a brunette but I'm thinking to let my silver shine through.  If I lose it ,,,it'll grow back  Baseball caps etc will be my jam ?

Hugs

GG

Bill_NC

Max Former Hodgkins Stage 3 said:

Symptoms

tg,

I had NLPHL also.  It is an indolent Hodgkins strain, pretty rare, constituting less than 1% of all new lymphoma diagnoses annually.   It is quite similiar to the NHL follicular disease.   I was initially diagnosed with extremely widespread disease, Stage III.   Tumors in heart area, both axillary (armpits), spleen, pelvic area, and all around lower neck and both lungs, as well as compressing the superior vena cava and esophagus.   At diagnosis, I had never felt an enlarged node in my life (to the touch).

I ended treatment 10 years ago, and still have serious, almost constant itching, which is symptomatic of the disease, and I continue with profound weakness.  But I have no active disease that can be identified.  Also, HL commonly will cause burning in the nodes with alcohol consumption.   Fairly rare, but a known HL symptom.  I never drink liquior, but even one beer will often cause this for me -- just something to be aware of also.

I suspect the itching will not leave.  It may or may not reflect active disease.  I am told there is nothing to do for it.   Benadryl does not help.  I show NO skin irritation, no rases.

 

I wish I could be more optimistic in this reply,

max

I second that

Agree with Max, I had the same burning sensation after alcohol. I did stop all alcohol consumption since my diagnose. Occasionally I still have itching under my armpit and the left side of my face. 

Samiam1114

Bill_NC said:

I second that

Agree with Max, I had the same burning sensation after alcohol. I did stop all alcohol consumption since my diagnose. Occasionally I still have itching under my armpit and the left side of my face. 

Alcohol

I bought benadryl to try to help it. See, when I drink, it doesn't bother me. Maybe you have to be further along for that to occur? I know everyone is different though, so not sure.