Newly Diagnosed - What to Expect

Hi all.

My partner was just diagnosed this week with Diffuse Large B-Cell Lymphoma. It appears to be fairly early, although we have not been told offically what "stage" she is. Her chiropracter noticed enlarged lymph nodes and told her to get them checked -- one week later here we are! (She had a chest CT 8 months ago for suspected pneumonia and it was clear...... now she has about 8 small nodules in her lungs, plus enlarged nodes in her neck). Based on CT scans, it looks like no other organs are involved, though she has 2-3 enlarged lymph nodes in her abdomen and pelvis.

Her LDH just came back within the normal range (though on the high side), and her SED rate is 45. SHe is tired, has intermittent low-grade fevers, and loss of appetite.

We see the oncologist Tuesday afternoon --- Dana Farber in Boston.

WHat should we expect for treatment? How does it impact your life? Are people able to continue working and functioning?

Any information would be helpful -- this is such new territory!

(Oh - my partner is female, 56, and in otherwise great health......)

Thank you.
Jen

Jen-
Welcome to supportgroups.com, I'm sorry to read about your partner's dx. I think you'll find a wide range of responses to your questions. I don't want to speculate too much on stage or dx until you learn from the oncologist, but some good early signs are the LDH levels being in the 'normal' range and the fact that her overall health is solid.

Now, after the chiropractor, did she see a local oncologist who referred her to Dana Farber?

Also has she had a biopsy of any kind?

Speaking in general, for DLBCL at a comprehensive cancer center like Dana Farber, chemotherapy and local radiation are standard, though the frequency depends on a variety of factors.

Ross

She had a biopsy of one of the masses in her lungs, which is how we got the diagnosis. We are waiting on some more detailed pathology reports before they determine the appropriate chemo drugs. It was her primary care who ordered the CAT scans and bloodwork. A diagnostic radiologist did the lung biopsy.

We are in the Boston area, so Dana Farber IS local for us......we will be meeting the oncologist on Tuesday afternoon (next week).

I am feeling mostly optimistic, but fearful of the treatment itself and the side effects.....

Thank you for your feedback and information!
Jen

Jen-
So the pathologist who made the diagnosis from the biopsy was associated with her primary care doctor, and not with Dana Farber? If this is the case, one thing you might prepare for is to find out that the diagnosis was not quite accurate. I don’t mean to say she won’t have cancer, I mean to say that any lymphoma diagnosis should, without question, be scrutinized by a second, more qualified pathologist, and you’ll find just that kind of pathologist at Dana Farber. If it isn’t clear when you see the Onc at Dana Farber, make sure to ask if the biopsy has been reviewed by one of their hematopathologists so that you can feel comfortable with the diagnosis being accurate. An accurate lymphoma diagnosis is among the most difficult to make in pathology, and is often inaccurate if not done by a qualified pathologist.

Without doing any speculating, I will add that the ‘gold standard’ first-line treatment for DLBCL at NCI designated cancer centers is the chemo regimen R-CHOP, although every patient is different.

Start writing down questions you have now, and don’t for a moment hesitate to call the doc at Dana Farber ahead of your appointment if you really want to ask a question.

Ross

i went to a new Oncologist and he said one thing thast seem to stick. One is Lymphoma is a disease taht will always be a part of your life. It will need treatment pretty much for life. Its like having high blood pressure, it iwll always need meds or treatment but can be controled. He also said dont let anyone tell you how long you have...No one is the same, and treatment is changing for the better all the time. Good luck.

Tammy-
Your oncologist is substantially better well informed than I am, with credentials to back it all up, but on this point I have to disagree, unless he was referring specifically to indolent non-Hodgkin lymphomas like follicular lymphoma. FL, yes, is not considered ‘curable’, but it is widely seen as manageable and does in many senses fall in line with what you’re saying.

However, to speak of ‘lymphoma’ in such broad strokes is patently inaccurate. After all, the term ‘lymphoma’ represents as many as 50 – FIFTY – individual, heterogenous diseases, almost all of which have differing courses, outcomes, treatments, molecular signatures and so on.

In fact the term ‘lymphoma’ has been redefined by the AJCC as referring to blood cancers that form solid masses or tumors, while the term ‘leukemia’ refers to circulating cancer cells, and diseases with both are called lymphoma/leukemias, while now, each and every one of them falls under the Group of “lymphoid neoplasms.” The point-- that hematologic cancers are a moving target, and characterizing all of them based on a single example is disastrously misleading.

All that said, I will wildly agree with this: “Dont let anyone tell you how long you have…No one is the same, and treatment is changing for the better all the time.”

Ross

Ross --
Thank you for the insight. I will be sure to ask about the pathology report. Right now, we are waiting on a more detailed report from a pathologist who specializes in hematologic disorders (?). I think they wanted to do more detailed analysis before we met with the oncologist so she could be more targeted with the treatment. I will check to make sure the pathologist and lab were qualified! Today we are getting all the copies of the CAT scans on CD to bring with us Tuesday.

We did get somewhat good news yesterday, and that is that her overall LDH level is within normal limits (high side of normal, but still normal). I guess that is a positive prognostic indicators....

I will start getting my questions organized. I think most of them are related to the treatment -- expected side effects and how to manage them -- as well prognosis, of course. For some reason, I am quite sure she will recover --- relatively young, otherwise healthy, and we seem to have caught this fairly early. And we live in a pretty good place for cancer treatment. All things to be thankful for!

I am also thankful for this online support group! I am learning a lot.

Jen

Hello, I was told in 2006 by 4 physicians that they thought I had Inflammatory Breast Cancer- stage 4. After several suspicious lumps and lumpectomies (4) which all came back "inconclusive". I was examined every 3 months for awhile then every 6 months. In January 2010 I had swollen lymph glands in the neck and under the arms. The biopsy came back as "Lymphoid Hyperplasia". I was told I was going to be in the "watch and wait" stage ??? Meanwhile, I have become very tired and weak, constant swollen glands in the neck, under arms and groin, sometimes being slightly painful/discomforting along with a chronic cough. I am 58 years old. I went to my family physician because of the tiredness and cough(instead of my surgeon)and he asked me if I was depressed??? He then told me that I should be seeing a hematologist and and oncologist. I'm confused why?? My surgeon hasn't suggested it but, of course I didn't go see him in May when I was suppose to. My question: Has anyone else felt like this or been diagnosed with Lymphoid Hyperplasia? And what did you go through? I'd appreciate any reply. Thanks, aries414 in St. Augustine, Florida.

Aries,
I dont know anthing about your type of condition but good luck. I have stage 4 Foliclar Lymphoma. I dont know much about the rest of the types. I'm sure someone will respond to give you answers.
Tammy

I’m sorry to hear of your diagnosis. I’ll pray for your condition as well as mine. I know my body and I know I’m not well. They first tried tons of antibiotics but it did nothing to reduce the swollen glands. I would just like to know what’s wrong so we will know what direction to go in. I don’t like this “watch and wait” mode. I sincerely thank you for your reply. I’ll pray for a speedy recovery for you. :slight_smile: Stay strong and positive.

Just an update. We have been to Dana-Farber, and LOVE the oncologist and team (there are always three docs in the room, plus a couple of nurses, it seems - teaching hospital and all). The lab at DFCI reviewed the slides and confirmed the diagnosis......DP starts R-CHOP on Thursday. Yesterday, she had a bone marrow biopsy, some additional bloodwork, and a PET scan. Her blood cell counts had dropped, so they decided to do a transfusion and an EKG --- they are AMAZING there. Were able to call down right then and get everything scheduled for the same day (that day), and we got through all the tests and procedures like clockwork. I know if we had chosen to be treated at our local suburban hospital, it would have taken them a couple of days to get all of the tests and procedures coordinated....... At DFCI, they drew the blood at 8:00 and had the results up online and available for the doctor by 8:30. Pretty impressive!

The oncologist we are working with ONLY treats lymphoma, which is nice. She is extremely knowledgeable, and aggressive - both with the treatment and with the management of side effects. Her team includes another doc who is a Board-certified internist, MD and PhD, doing a post-doctoral fellowship in Hematologic Oncology. We LOVE her..... And there are two Harvard medical students (one 4th year, one Resident) who will be following the case. Nice guys -- very serious and earnest.....

The team seems to think Frieda will actually fell better after the first treatment. One of the lymph nodes is pressing on her vagus (sp?) nerve and causing an elevated heart rate (135ish), which is very tiring. Another lymph node is pressing on a nerve in her pelvis, causing pain in her leg. They are hoping for rapid shrinkage, based on how aggressive this lymphoma seems to be, which should bring her some relief. They also don't seen to be too concerned about side effects from chemo......automatically prescribe three different anti-nausea drugs to start right away. We'll see how that goes.

Anyway, I am thrilled with the Dana-Farber so far. Actually looking forward to the first chemo infusion.....

Thoughts and prayers to you all. This is a really challenging illness. The "watch and wait" approach would be impossible for me -- blessings to those of you who have to go that route.

Jen

Jen, I pray everything goes well with your friend. I personally know the frustration and anxiety that comes from being ill and not know what direction to go in. I’m happy that it seems you guys are headed in the right direction. God speed on her recovery…
Freida M. aka - aries414

Jen-
I so admire your ability to handle all this - I assume you are primarily taking care of your partner? I am primarily taking care of my dad and I'm usually cheery and optimistic but since my dad has been diagnosed I find myself so angry and sad and filled with guilt or remorse or some feeling that there seems to be a lack of words for. How do you stay so positive and supportive and excited?

Hi Jen,Tell your partner keep her chin up stay strong ,most don't have all the side effects.One thing for sure get plenty of rest and drink lots of fluids.Sounds like a great team of docs.Aries would certainly not sit on that news.Never had painful nodes myself without infection.All my enlarged NHL nodes only caused pain if they were pushing on or in lungs or heart.Would seek the advice of an onc.Can't hurt.Best wishes to you both,Michele