Another lymphoma diagnosis

mossback99

Well the other day I got a biopsy result from a lump on my neck that indicates Large B-cell lymphoma, germinal center type. Don't know much else yet. Scheduling an appointment with an oncologist ASAP to hopefully learn more soon. Also have a full body scan scheduled for next week. Originally went to a ENT doc for the lump since it was on the neck. He suspected a H&N type cancer until the biopsy totally shifted the diagnosis. So now I'm doing some general research and reading up on what I can. Some scary stuff out there. Not sure I can or want to read much more. Easy for me to get really scared and depressed.

So now I'm just hoping it's an early stage and treatable.

Have looked at a number of threads here and it has already helped calm me a little.

Thanks to all who have shared so much information and taken the time to help others. I hope to contribute as I can.

My best wishes to all.

jleben71

Good Luck with your treatment

mossback99

Thank you.

PBL

Hello mossback99, and sorry to welcome you into the lymphoma community.

At this point, things are understandably blurry and scary, but hopefully this will get better as you learn more about your diagnosis and treatment. DLBCL is the most common type of non-Hodgkin lymphoma and treatment options are well-known. Being one of the "aggressive" 'i.e. rapidly-growing) types, it is also curable, meaning that successful treatment could eradicate it permanently.

You mention making an appointment with an oncologist; knowing that you are dealing with one of the so-called "blood cancers", it might be wiser to find a doctor who truly specialises in these types of cancers, i.e. a hematologist.

If you are in the U.S., you may want to look one up at one of the NCI-designated Cancer Centers by following the link herebelow.

Do not hesitate to let us know how things are going and come back with any questions that may arise.

I hope this helps.

https://www.cancer.gov/research/infrastructure/cancer-centers/find

mossback99

Hello PBL,

Thank you for this info. I must admit I am very confused right now. Basically my first interaction with a doctor was to go to an ENT doc because my one and only obvious and apparent symptom is a lump on my neck. He scheduled a CT scan of my head and neck as well as a biopsy of the mass. The CT scan happened first and did show the mass as 'abnormal'. The biopsy results just came in the other day and that's when he said this is actually not a H&N cancer but lymphoma. He just put an urgent referral in for oncology but I have yet to speak with anyone from there yet. I just called them today actually to check the status and it's working through their care team apparently. I do have a full body PET scan scheduled for next week.

I live about twenty minutes north of Seattle, so I am near Fred Hutch and quite a few other bio tech and cancer/health related facilities. Had always hoped I would never need to utilize them myself….

Once I am in contact with the oncologist one of the first things I will ask about it finding a hematologist. I would not have known to ask about this otherwise, so thank you again- I am grateful.

PBL

You are very welcome. Of course, none of us ever dreamed of pushing the door to a cancer center, but you are lucky in your misfortune to have one of the best possible facilities at your disposal…

As I understand it, you will in all likelihood head to that first oncology appointment with your PET scan results and possibly complete bloodwork as well. Asking the ENT who handed you your diagnosis for a referral directly with a hematologist might enable you to speed things up towards the next step - which will be treatment.

Kind regards.

PBL

mossback99

Thank you again for your help and insights.

mossback99

Had my PET scan today and also had blood drawn for testing. The blood test results came back quickly, within six hours or so, and everything shows as normal and inside the green range. My LDH is 125. Can i infer anything from these blood test results?

PBL

Hello again mossback99,

It is difficult to comment on your blood tests, not knowing what was tested…

What can be said for the time being is that blood tests are useful in assessing your ability to withstand treatment, as kidney and liver function are important in eliminating chemotherapeutic agents.

LDH level within normal range is certainly encouraging as regards the extent of your disease.

Do let us know what the PET scan results are when you have seen your hematologist.

Kind regards,

PBL

mossback99

I start R-CHOP at the end of the month. Hopefully just four cycles. Will update more as things progress.

PBL

Hello mossback99,

Four cycles of R-CHOP is rather short - I assume that means there is only a small amount of lymphoma to treat.

I have no doubt you are well-informed and prepared for this. I had six cycles of the same and will share any info you feel you need. One major point for which you must plan ahead is major constipation - I suggest you make sure you have an arsenal at hand, as this will likely hit from day 1.

Kind regards.

PBL

mossback99

Thank you, PBL. I think it's safe to say that while I am learning and attempting to increase my knowledge I probably know the least of anyone on these boards or most other patients. And my mention of four cycles is purely based on what I have heard from my doctor. It seems I have perhaps the most 'standard' sub-type of DLBCL possible. Thus far it is confined to my neck and has not spread. The doctors (via a second opinion) put me at stage 1A and an IPI score of zero. I guess the hope is to, of course, eliminate the cancer but yet take advantage of its early and limited state to also help minimize side effects from the R-CHOP. So the plan, I believe, is to receive three cycles of the chemo and then do a scan to see how effective things have been.

I'd certainly love to avoid the worst of any side effects so I like this plan. But I realize things could change at any time. For now I have my fingers crossed. I will update as I know more.

I have heard about the potential for constipation. I have some ideas for the arsenal but if you have any specific suggestions I would most certainly love to hear them.

Thank you again.

PBL

With stage 1A and an IPI of zero, you should definitely have a good chance of this being a "one and done" scenario.

My atrocious experience with constipation in the first five days of cycle 1 was for a good part due to immediate neuropathy, so I'm not sure how much a "standard" post-R-CHOP constipation would require… It took several different medications to get anything moving for me, but I would say Dulcolax and milk of magnesia were my best friends then and for several years afterwards. It has only been a couple of years since I have resumed eating some rice…

I think it best to discuss this with your hematology team, as they have all the information in your case to prescribe the most appropriate medications to you. My advice, though, is to follow orders (taking all medications as prescribed, reporting fever as indicated) and talk to your care team if anything arises that causes you discomfort: odd or unusual symptoms, stubborn constipation or nausea, sudden change in finger/foot sensitivity, etc.

I hope this is useful to you.

KInd regards,

PBL

mossback99

It's very useful, thank you.

Just to make sure I understand, was your neuropathy due to the chemo? And did you not have standard R-CHOP? Also, did the neuropathy subside or go away completely at some point?

PBL

Yes, I had "standard" R-CHOP, and the neuropathy was a direct result of my first R-CHOP infusion.

Now, all patients are different - which is why your care team knows best what to do in your specific case - and most patients experience some neuropathy towards their fifth or sixth cycles of treatment with R-CHOP.

In my case, that very first infusion brought on brutal neuropathy. All of a sudden my fingers were so numb that I couldn't button a shirt, could no longer type, without looking at what I was doing; I couldn't feel the difference between one sheet of paper and a dozen; I couldn't squat down and get back up without hoisting myself up; I had flashing pain in my jaw and teeth on one side (I believe this was my trigeminal nerve being affected) - and my entire abdomen went awfully "silent".

My hematologist carefully assessed all of this before starting my second infusion, and definitively banned the Vincristine from my "cocktail", so that, technically, the subsequent five infusions were "R-CHP".

I would say that I recovered partially and adapted to the remaining neuropathy - essentially by visually checking what my hands are doing. The trigeminal nerve thing did not (thankfully!) last past the first few days. My digestive system remained impaired for several years; I gradually learned to adapt my diet and use laxatives when needed.

Again, if all goes well, a short course of R-CHOP should spare you most - if not all - of this; you will lose your hair, but it will grow back after treatment is over. The essential point is, do not hesitate to discuss anything that arises with your care team, however trivial it may seem.

…and, needless to say, we are here to share our experiences - hopefully to help make sense of it.

Kind regards,

PBL

mossback99

Thank you for all this info. And I'm sorry to hear about the significant neuropathy and other side effects you endured. Honestly that stuff scares me almost as much as the lymphoma itself.

I had my first R-CHOP cycle yesterday and it went well. The port worked and no reactions, thankfully. It took a while but by the time it was over I felt pretty good, actually. Later in the evening I did get quite tired but woke up this morning feeling pretty good again. And my lump is feeling much less uncomfortable now- less pressure and less pain. So far it's been encouraging. If the lump continues to subside these next few days I would be beyond grateful. I guess time will tell.

I know it's only the first cycle but I pray I can continue to avoid any significant neuropathy or other major side effects. Have been drinking as much water as possible. Trying to flush the system. And eating quite a bit as well.

And I fully hear your advice to stay observant and discuss anything that arises with my doctor. I absolutely will.

Very curious to see how the second cycle goes. It's kind of funny that my anxiety doesn't really go away but just sort of shifts from one thing to another.

Thanks again for taking the time to share your experience.

Best wishes to you and all.

PBL

Thank you for your kind words and for your update. This all sounds like very good news.

One word of caution though: the prednisone which you are taking for the first five days of each cycle (the "P" in CHOP) is likely what is helping you feel "pretty good" at the moment. However, a "crash" is to be expected on days 6-8 when your body must adjust to a return to its normal dose of cortisone. With this knowledge in mind, I suggest you try not to overdo anything during those five days. Pacing yourself may save you a painful return to reality.

The anxiety you express is very common and will probably stick around for a long time, even after treatments are over and you are declared "NED" - which I hope you will be if all goes as well as it seems. A cancer diagnosis remains serious business, and we all experience a hypervigilant state about any and every thing. Again, this is something to keep an eye on and discuss with your doctor if/when it starts making it difficult to go on with your normal life. They can generally offer counseling help with someone who is specifically trained in dealing with cancer patients.

Kind regards,

PBL

TonyF747

https://csn.cancer.org/discussion/comment/1723726#Comment_1723726

All my best wishes in your journey. There will be bumps in the road as you go through it. I found that focusing on the task at hand got me through.

Was diagnosed January 2024 with Stage IV DLBCL. Went through two 5 day R-EPOCH treatments and then four R-CEOP's. Tumor on T-11 close to the cord. And spots in other places throughout neck, torso, and femur. Stopped the Doxorubicin after two because of heart failure and I was close to my lifetime limit. Previously had it 30 years ago for a recurrence of Hodgkin's which caused the heart failure to appear later among other things.

I most remember being loaded with fluids during those two in-patient sessions. Weight was up about 25 pounds. Tough to move around. Metallic taste in my mouth. Did have slight neuropathy in my feet mainly but it resolved after a few months. Acid reflux was especially bad throughout. Resolved itself within 3 months. Had shortness of breath all of the time which is a little unnerving. Took a while for blood-work to normalize but that was expected.

Resulting PET scans show no evidence of Lymphoma. I'm in pretty good shape for the shape I'm in, to borrow a phrase. Started working out and walking before my last treatment and continue to this day. Have to be ready for the next battle should it come.

Keep a positive attitude and listen to your care team and you will win.

Can't wait for you to ring that bell!!!

mossback99

PBL,

I appreciate those insights.

The anxiety is real but I suppose I am managing it pretty well overall. I mean, I'm doing all I can do and that's all I can do. And I'll continue to do so for as long as possible. The rest is up to God and the universe.

Regarding the prednisone, thanks for the heads up. I have read about the crash in other threads as well. It does concern me. Do you know what the exact purpose of the prednisone is? Does it directly help in the elimination of the cancer cells or is it purely to help mitigate or reduce the effects of the other drugs in the regimen?

Tony, hello and thanks for your well wishes! And thanks for sharing your story. Sorry to hear about the side effects and heart troubles. Do I understand correctly you have had lymphoma three times now? Once thirty years ago, once sometime before that and then again early last year? Most importantly, thank you again for your words of encouragement. I am grateful.

TonyF747

https://csn.cancer.org/discussion/comment/1723734#Comment_1723734

Mossback,

Yes I've had it 3 times in my life. Early 20's twice and then not until age 58. Thought I was out of the woods since I went so long. Going for my 3rd title. ;)

First time treated with radiation only. I was a scared kid and the word chemotherapy frightened the you know what out of me. Should have done the chemo and chances are I might have avoided the last two.

Please keep us updated on your journey and again I wish you the best. We are all in this together.

mossback99

Three times…. Holy smokes. Yeah, I totally get why you thought you were out of the woods. So sorry about the third title…. Let's make it the last one, okay? You already have a dynasty! LOL…

Yes, we are in this together. Thanks again for your support. I will most certainly continue to post updates.