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?