Lymphoma vs Sarcoid

TNgirl111619

PBL said:

As a rule of thumb, now that you have an actual lymphoma diagnosis (and soon to be complete...) I strongly suggest you ask your hematologist what s/he thinks you need. 

Depending on your treatment - and bear in mind that in some cases, your treatment may initially consist in "watch and wait", i.e. NO actual intervention at all - some foods (not to mention vitamins or supplements) may not be compatible with the medications you are given.

I hope this helps.

PBL

Thanks

Thank you for your response! That is helpful. I didn't know if there was anything to help with fatigue etc. but I will most definitely check with my hema/onc regarding this. Thanks for the advice!

TNgirl111619

ShadyGuy said:

Good attitude!

Bad news is you have lymphoma. Good news is it's only lymphoma! This is a very treatable disease and treatment options are expanding rapidly.

Best advice is avoid all vitamins and supplements during treatment. After treatment consult with your medical team before taking any supplements. Be skeptical of claims by people who want to sell you something! Tennessee strong!

When you see this, believe it!   "This product is not intended to diagnose, treat, cure, or prevent any disease"

Positivity

I like your positivity! That is my perspective on things right now as well. At least it is lymphoma, as much as no one ever wants a cancer diagnosis. I am thankful we found it the way we did and when we did. I already have "grapefruit size" masses in my mediastinum, is how they were described from the pulmonologist. I'm just ready to find out exactly what it is and fight it head on. Thanks for the support And advice! It really means more than anything else. And yes, Tennessee strong! 

Max Former Hodgkins Stage 3

TNgirl111619 said:

Positivity

I like your positivity! That is my perspective on things right now as well. At least it is lymphoma, as much as no one ever wants a cancer diagnosis. I am thankful we found it the way we did and when we did. I already have "grapefruit size" masses in my mediastinum, is how they were described from the pulmonologist. I'm just ready to find out exactly what it is and fight it head on. Thanks for the support And advice! It really means more than anything else. And yes, Tennessee strong! 

2nd Opinion

TN,

Second opinions (diagnostic) are most justified in cases in which (1) the cancer is a very rare variety, and (2) when it is one that is difficult to diagnose.   Factors 1 and 2 are usually found together.   If you are being treated at a premier cancer center with a highly-regarded pathology department, and if neither factors 1 or 2 are present, then most people would not see a second opinion as necessary.  Also, oncologists will TELL you, straight up, whether or not your diagnosis is problematic.   A lesser form of 'second opinion' is having the biopsy sample sent to a second patholgy lab for confirmation.   This is more common, and does not reqire that the patient travel, etc.

Second opinions regarding treatment selection are justifed if the treatments are necessarily severe or life-threatening (e.g., SCT).  Usually, lymphoma at a given stage allows more than one Best Practices treatment choice.   Good oncologists will go over all accepted treatments in detail and use your choices as a factor in deciding on the therapy.

As everyone mentioned above, supplements, 'holistic remedies,' etc., are almost always discouraged during chemo.  Ask your doctor.

po18guy

Supplements

Generally, I have been advised to take a good quality adult multi-vitamin. During treatment (if any), pro-biotics were recommended, but doctor's opinion is final!

GGc0ok

Hi TNgirl I’m GG

Hi TN nice to meet you I'm GG

I too have been diagnosed with Lymphom/ leukemia. I have CLL/SLL. Diagnosed Nov. 2, 2020. I'm a "watch and wait" case. I'm being monitored every 3 months. I had my second 3 month checkup on June 8.  I'm stable with slight lymph node enlargement. My labs are all good within range. I've had labs, labs and more labs, X-ray,  Cat scan, Pet Scan, biopsy, Pet scan.  I told the doctor I feel like a time bomb waiting to go off.  He said it doesn't work like that.  That it's slow and treatable.  He tells me "don't lose sleep over it". 
I'm a caregiver for my hubby we're seniors. He's got a lot of ailments. He literally is home bound. He has Pulmonary Fibrosis. Plus heart disease and, diabetes. Being his caregiver has been tough but it's doable. I do get tired usually in the afternoon.  I will take time for myself and rest for a couple hours. I asked my oncologist if there were any supplements I should take, he said no if there were I'd let You know.  But I've taken supplements my whole adult life.  Changing them over the years as I've aged. I did read not to eat raw fish and to not let meat thaw out on counter. Also I was taking Collagen and read that I probably shouldn't take it at this time.  I also stopped coloring my hair, last coloring was in Sept. of last year. My hair started falling out soon after my diagnosis. It was a shock to my system also the diagnosis of my hubby was another shock to the system.  But now seems to be ok. 
I'll be checking in from time to time. Know that this group is very informative, kind, and comforting.  Just what we all need.  
My prayers for you will be ongoing as for all of us that are in this together. 

Hugs GG

TNgirl111619

po18guy said:

Supplements

Generally, I have been advised to take a good quality adult multi-vitamin. During treatment (if any), pro-biotics were recommended, but doctor's opinion is final!

Perfect. I will definitely

Perfect. I will definitely check with the doctor before doing anything that I am unsure of!

TNgirl111619

GGc0ok said:

Hi TNgirl I’m GG

Hi TN nice to meet you I'm GG

I too have been diagnosed with Lymphom/ leukemia. I have CLL/SLL. Diagnosed Nov. 2, 2020. I'm a "watch and wait" case. I'm being monitored every 3 months. I had my second 3 month checkup on June 8.  I'm stable with slight lymph node enlargement. My labs are all good within range. I've had labs, labs and more labs, X-ray,  Cat scan, Pet Scan, biopsy, Pet scan.  I told the doctor I feel like a time bomb waiting to go off.  He said it doesn't work like that.  That it's slow and treatable.  He tells me "don't lose sleep over it". 
I'm a caregiver for my hubby we're seniors. He's got a lot of ailments. He literally is home bound. He has Pulmonary Fibrosis. Plus heart disease and, diabetes. Being his caregiver has been tough but it's doable. I do get tired usually in the afternoon.  I will take time for myself and rest for a couple hours. I asked my oncologist if there were any supplements I should take, he said no if there were I'd let You know.  But I've taken supplements my whole adult life.  Changing them over the years as I've aged. I did read not to eat raw fish and to not let meat thaw out on counter. Also I was taking Collagen and read that I probably shouldn't take it at this time.  I also stopped coloring my hair, last coloring was in Sept. of last year. My hair started falling out soon after my diagnosis. It was a shock to my system also the diagnosis of my hubby was another shock to the system.  But now seems to be ok. 
I'll be checking in from time to time. Know that this group is very informative, kind, and comforting.  Just what we all need.  
My prayers for you will be ongoing as for all of us that are in this together. 

Hugs GG

Hi, GG! Thank you for your

Hi, GG! Thank you for your sweet message. I am sorry to hear about your diagnosis and your husband's health issues as well. It helps a lot to be able to talk to others like you, and all the kind people on this forum. I don't know my full results yet, but hopefully should really soon. My chest x-ray and ct scan showed grapefruit size masses in my mediastinum area. This has been going on for a long time and I have been fatigued for a very long time. I had labs run at my hematologist's office several times on my own accord because of the fatigue, and had trending blood work out of range but nothing was ever done about it. I'm glad they have found yours at the stage they have. I hate the feeling of knowing something is in my body that I have no control over. I have that issue with a lot of things in life lol. Maybe this will teach me how to let go of the things I cannot change and let God be in control. Anyway, please take care of yourself! I know you have a lot of your plate taking care of your husband also, but that's what we do for the people we love, right? I'll be keeping you in my prayers and I'll keep all updated when I get my results. Love and hugs! 

Lauren

TNgirl111619

Max Former Hodgkins Stage 3 said:

2nd Opinion

TN,

Second opinions (diagnostic) are most justified in cases in which (1) the cancer is a very rare variety, and (2) when it is one that is difficult to diagnose.   Factors 1 and 2 are usually found together.   If you are being treated at a premier cancer center with a highly-regarded pathology department, and if neither factors 1 or 2 are present, then most people would not see a second opinion as necessary.  Also, oncologists will TELL you, straight up, whether or not your diagnosis is problematic.   A lesser form of 'second opinion' is having the biopsy sample sent to a second patholgy lab for confirmation.   This is more common, and does not reqire that the patient travel, etc.

Second opinions regarding treatment selection are justifed if the treatments are necessarily severe or life-threatening (e.g., SCT).  Usually, lymphoma at a given stage allows more than one Best Practices treatment choice.   Good oncologists will go over all accepted treatments in detail and use your choices as a factor in deciding on the therapy.

As everyone mentioned above, supplements, 'holistic remedies,' etc., are almost always discouraged during chemo.  Ask your doctor.

Thank you for this

Thank you for this explanation! I've had quite a few people tell me recently that I need to get a second opinion, but at this point I don't see it necessary. On top of that, my husband and I are in the process of selling our house and building a new house which should be ready in September. I have to work and have an income as well. Now, if it does come down to something rare that would be in my best interest for a second opinion then I will do what I need to do. But at this point, we don't know enough for anything.

TNgirl111619

PET Scan

My oncologist called me this morning and no new information but they are going to make me an appointment for a PET scan and echocardiogram ASAP. If you pray, please keep me in your prayers! 

PBL

Standard procedure

The PET scan aims at ascertaining stage of disease and the echocardiogram checks for any cardiac insufficiency prior to chemotherapy.

Make sure you are properly fasted and do not exercise for the 24 hours leading up to the PET scan, as that is key in getting the most accurate results.

Do let us know how things go.

PBL

TNgirl111619

PBL said:

Standard procedure

The PET scan aims at ascertaining stage of disease and the echocardiogram checks for any cardiac insufficiency prior to chemotherapy.

Make sure you are properly fasted and do not exercise for the 24 hours leading up to the PET scan, as that is key in getting the most accurate results.

Do let us know how things go.

PBL

Oh okay. Thanks fot the

Oh okay. Thanks for the information. I'm glad that I came across this site, as all of this information helps and the support means a lot.  I will most definitely continue to post updates. Appreciate all of the help!

GibiSamtin

ahh this stuff

let's say that no one disease is good

TNgirl111619

Appointments

Received a call from the nurse at my oncologist's office and they have scheduled me for a bone marrow biopsy Monday, PET scan Tuesday, and echo Thursday of next week. She mentioned a CD30 (which I had to look up) and mentioned Hodgkins but still no for sure diagnosis. They have sent the biopsy off to the Mayo Clinic for 2nd opinion. I will meet with my doctor on the 19th and they expect to have all results by then. 

TNgirl111619

Bone marrow biopsy

Has anyone had a bone marrow biopsy or know what to expect? I know the bone marrow makes blood cells but is this something they typically do? 

ShadyGuy

TNgirl111619 said:

Bone marrow biopsy

Has anyone had a bone marrow biopsy or know what to expect? I know the bone marrow makes blood cells but is this something they typically do? 

Yes

I have had it done three times. The purpose is to see if lymphoma has entered the bone marrow. A hollow needle is inserted into one or both hips and a sample of marrow is extracted for lab analysis.  It is not a particularly pleasant experience but is over very quickly. My onc did it in only my left hip but MD Anderson did both hips. As I said it is over in just a minute or two. It sounds worse than it is. You will do just fine.

TNgirl111619

ShadyGuy said:

Yes

I have had it done three times. The purpose is to see if lymphoma has entered the bone marrow. A hollow needle is inserted into one or both hips and a sample of marrow is extracted for lab analysis.  It is not a particularly pleasant experience but is over very quickly. My onc did it in only my left hip but MD Anderson did both hips. As I said it is over in just a minute or two. It sounds worse than it is. You will do just fine.

Wow. I have heard that it can

Wow. I have heard that it can be painful, but it is just part of it. I've heard a lot about MD Anderson. If i have to go elsewhere, I will probably go to Vanderbilt. It would be the closest to home but others have recommended MD Anderson and the Mayo Clinic as well. What type of cancer did you have? Thank you for the encouragement. I hope that one day I can post here and be on your side of things and be able to help and support others. It really helps!

Burni

TNgirl111619 said:

Appointments

Received a call from the nurse at my oncologist's office and they have scheduled me for a bone marrow biopsy Monday, PET scan Tuesday, and echo Thursday of next week. She mentioned a CD30 (which I had to look up) and mentioned Hodgkins but still no for sure diagnosis. They have sent the biopsy off to the Mayo Clinic for 2nd opinion. I will meet with my doctor on the 19th and they expect to have all results by then. 

appointments TNgirl

Ive been following your journey so far.Sounds like they are right on all the appoitments,tests,biopsy,scans and echo.The bone marrowbiopsy was the most painful out of all of these.Sorry. They will probably start some sort of chemo plan in two weeks of all the results.Your on the right site to learn and get others comments and encouragement.

po18guy

Well pilgrim...

I have had more than I can remember. Depends on your pain tolerance. With local anesthetic and some other form of sedation/pain relief, I have found them to be about 2-3 seconds of strong, but dull pain. Then it stops. Two samples, as I remember. The last one, I 'John Wayned' it and just went with the lidocaine injection at the site. Walk in-walk out. The worst I ever had, I was sore for almost two weeks, but that was the only one. The rest were slight discomfort to none at all afterward. But I tend to be rather numb in any case - even below my shoulders.

ShadyGuy

TNgirl111619 said:

Wow. I have heard that it can

Wow. I have heard that it can be painful, but it is just part of it. I've heard a lot about MD Anderson. If i have to go elsewhere, I will probably go to Vanderbilt. It would be the closest to home but others have recommended MD Anderson and the Mayo Clinic as well. What type of cancer did you have? Thank you for the encouragement. I hope that one day I can post here and be on your side of things and be able to help and support others. It really helps!

I had …

Stage IV Follicular with bone marrow involvement. I still have it and am under "watch and wait".I guess it is "resting" (LOL). My biggest symptoms are fatigue (quite severe at times - other times not so bad) and neuropathy in my feet. Blood counts remain low which accounts for some of the fatigue. Long as it doesn't transform I am good to go! Vanderbilt is good. My family in the Nashville area swear by them. My main treatment is still with my local oncologist and as backup one visit every 6 months to Duke. You can't go wrong with MD Anderson. I am a mountain person and averse to crowds, traffic and hustle-bustle. I found MD Anderson very intimidating - kinda like grand central station at rush hour with a real language barrier - something my poor hearing didn't help. Great people and they are very, very good at what they do. Cheers.

TNgirl111619

ShadyGuy said:

I had …

Stage IV Follicular with bone marrow involvement. I still have it and am under "watch and wait".I guess it is "resting" (LOL). My biggest symptoms are fatigue (quite severe at times - other times not so bad) and neuropathy in my feet. Blood counts remain low which accounts for some of the fatigue. Long as it doesn't transform I am good to go! Vanderbilt is good. My family in the Nashville area swear by them. My main treatment is still with my local oncologist and as backup one visit every 6 months to Duke. You can't go wrong with MD Anderson. I am a mountain person and averse to crowds, traffic and hustle-bustle. I found MD Anderson very intimidating - kinda like grand central station at rush hour with a real language barrier - something my poor hearing didn't help. Great people and they are very, very good at what they do. Cheers.

Lol they are just being jerks

Lol they are just being jerks hanging out! I have read a little about Follicular during research, but I know there are a lot. I'll keep you in my prayers that they don't change. I've had fatigue for a long time now and I just felt something wasn't right with my body. I'm 35 and knew it wasn't normal, as I used to exercise on my treadmill 3-4 times a week and just haven't had the energy to do it in a long time. Cancer doesn't discriminate! Lol I've been to New York many times so I totally understand what you mean by that. Always good to hear positive things about the cancer institutes. Taking it day by day and if I have to go to one at least I have options. Appreciate the encouragement and information!