No sign of disease

My wife was diagnosed with Non Hodgkins Lymphoma, B Cell, Marginal Zone and indolent about three months ago. It had spread to a number of lymph nodes, spleen(primary) and bone marrow.

She completed 4 weekly infusions of Rituxan only about six weeks ago. A new Pet Scan, blood chemisty and flow cytology were completed and yesterday, like "Cowboy" there is no sign of disease that is detectable by the best technolgy we have.

They won't call it a cure but a remission which could come back. If it does they will use the same treatment to knock it right back down.

Followup treatment will be a checkup in 3 months (chemistry only) and Pet Scan after 6 months. Further followup to be determined.

A side note, I was reading about some rituxan treatments last night and they generally seemed to say each infusion was 375 mg{?). I thought I remember her getting 600 mg(?). Will have to ask dr. next time we see her.

LeeH

That is really encouraging to me thank you. I have diffused large cell b lymphoma that was found in the hip...spread to the spleen and is now in the bone marrow. I start treatment in 2 weeks. Please keep me posted. God Bless Lori

Lori,

What is the treatment they are prescribing for you?

To give you a little more background, my wifes' lymphoma was at a point where, although her PET Scan lit up like a Christmas Tree, there were no actual tumors - just cell clumps detected. The road to diagnosis started with a low iron count on a routine exam and no real symptoms to have even triggered a visit. There was a delay in diagnosis when neither iron supplements or treatment for a newly discovered ulcer were effective in raising the iron level.

At that point we were referred to a hemotologist who pretty quickly got to the root cause.

The treatment itself was fairly free of side effects, although it really took her out of it by the next day. NOTE: they give you some steriods in the infusion so you feel really great - for a while. My wife did an hour of kick boxing exercise the next morning. Not a very good afternoon though.

Nausea can be an issue and they also infused benadryl and had her take some benedryl the night before too. Following the completion of treatment she started on Valtrex and will be on it for a total of 3 months becuase the rtuxan compromises your immunity. Mouth sores and lack of taste are two other issues we have dealt with. Also a sinus infection which is now being treated.

the rituxan infusion itself goes pretty quickly, however you MAY have problems in the beginning. Watch out for any chest heaviness or breathing difficulty in the beginning. If you get that tell them immediately and do not wait. They will back off the infusion and run saline thru you until it passes and then restart at a lower level. The infusion starts at a lower level of the drug and then ramps up every half hour until it is completed.

The week after the first infusion, she took blood tests before beginning and we could already see a strong reaction as her blood counts started to come back up. Once we saw that we were pretty confidant, although the dr said there is a tendency for those numbers to spike in the beginning.

Rituxan strength is cumulative and it stays in your system for three months so it is still in there working.

There are so many different variations on Lymphoma it is hard to get a handle on whether or not you have the same type as my wife.

I do wish you as much success as we had and please let us know.

LeeH

Lee…They are starting me off with the cocktail of RCHOP in which I will be starting next week. You post was very inspiring to me. Your wife and I have a lot in common in really inspires me. I will be praying for her continued recovery. I am trying to find a site to talk to survivors that have not had to repeat the treatment. So many I have read are on their second treatments. It is a little discouraging. I have Diffused BCell Large Lymphoma stage4.
My prayers are with you and your wife…Lori

LeeH-
Your post was also encouraging to me.
Thanks for sharing.
Geri

Thank you for your wishes Lori. I suspect you might have some difficulty finding a number of the long term survivors out there. Once people resolve their issue, they tend not to spend as much time on the support sites. I am a bladder cancer survivor (2 1/2 yrs) and don't spend nearly as much time as I did on the support site I used.

I wonder, and this is a question for both Lori and Geri, I don't seem to see much about getting second opinions and the type of institution that you should use. In the bladder cancer world, people will always say to not only get a second opinion but get one from a major cancer treatment center from people that are known specialists in bladder cancer. I don't seem to hear that kind of thing here.

Even after my surgery (radical cystoprostectomy and neobladder), my surgeon advised me to get 3 other opinions regarding the followup checkups and he would give me one recommendation to the Univerity of Chicago Hospital.

Am I missing something or what?

Geri, your diagnosis looks just like my wife's or maybe I am missing something here. Trouble with NHL is there are a million variants but I would think the same variants would get the same treatment and results. In your case that would tell me that your treatment should be 4 and out like my wife's. Check your blood counts from before treatment and a week or two after beginning. It should give you and idea of the how responsive you are to the treatment.

Another question I have is a lot of people mention actual tumors. My wife had no tumors although it had spread to the various areas. Maybe that is why there was no chemo with the Rituxan?

Bladder cancer is much simpler to understand. This NHL has me off balance.

Oh, one last note, it appears that MOST of the loss of taste was due to the sinus infection and is clearing up as the infection is.

Lee

Hi Lee…I too had no tumors but it spread to the spleen and bone marrow which made it a stage 4. As far as a second opinion I absolutely think everyone should at least get a second opinion. I have already started treatment but I have 2 opinions lined up and one is at a major cancer center.

It will ultimately be up to me to decide if I continue with the same treatment. The only problem being I am stuck with the one I am on as far as the insurance but I am not ruling out clinical trials as well. I have been researching a lot on these as well. This would be one way of getting around insurance. I am going to be watching my tests results very closely to see if I am responding. If I am not I am out of there. We all have a vested responsibility to watch what doctors are treating us with. Thank you for your support…Blessings Lori

hi Lee, continued good progress toyou and your wife. Second opinions in NHL are actually pretty routine due to the difficulty pathologists who are not experienced with blood cancers have in identifying type and subtype. At this point I have had three opinions rendered regarding my FL. The recomendation is the same for us as it was for you: Asecond opinions should be strongly considered and should be obtained from a NCCN.org member hospital and be rendered by a specialist in the type of cancer you have. In my case, I was referred to Sloan-Kettering in NYC and seen by the #2 person on staff. They did get it right and the difference was profound - I went from Stage 4 with suspicion of two types of lymphoma and bone marrow involvement to Stage 1 with FL.

Additional doubts developed over time due to some factors you can read in my post if interested: http://non-hodgkins-lymphoma.supportgroups.com/sg/non-hodgkins-lymphoma/indolent-lymphoma-and-the-difficulty-of-diagnosis

The good news is that the NCCN hospital was correct and, therefore, the treatment options and choices I have had and made were also correct. The major boards such as nhlcyberfamily, lymphmation and others all say that second opinions can be of particular value when diagnosed locally with NHL.

So, good luck and good health to your wife (and to you). To anyone recently diagnosed, consider a second opinion very strongly, it could save your life.

kermica

Hi Everyone.
Hope all are stable today. I just had my seven out of eight R-CHOP treatment. The post C-SCAN will be verrrie interesting! Got the ole Neulasta shot for those naughty white cells. Still have the remants of the ole cold. and I must say, that I'm not having a particulary horrible time. All things considered.

LeeH-My very own lymphoma has not progressd past the lymph nodes. I am stage lll as the nodes in my abdomen are also involved, so it's not exactly like your wife. But really close. And B-cell NMZ is not very common. I am sure there's good reason your wife had a different cocktail...we all have different things going on.
I believe a second opinion is important with this sneaky lymphoma. As you said-so many variants. Ross, our wonderful moderator, posted on this, but I can't remember which thread it is on. I encourage you to read the other treads. Many of us are on them, and all sorts of fabulous info filter through.
Despite my intial interest in diagnosing myself before the medical profession did, and reading reading reading about this "chronic disease", I somehow ceased to have the burning desire to study my labs and compare my numbers. I was sort of surprise what I didn't have the interest! but this way..I mean I know a few numbers, but well-I know I should ask for that info, and I probably will. At some point. Maybe if someone else did that for me....I just got tired after the W&W phase.
My understanding is that there are many many long term Lymphoma patients; hence, the new name of Chronic Disease. :)
Hope all continues to be well, and you, yourself, need some major snaps. Bladder Cancer. You Survivor You.
Geri

Hi Loril,

The Dr. told us that if it does come back, they will simply knock it down again with the exact same treatment unless there is something newer and better out.

She also said that if it does come back, it will come back in the same form and won't turn into something else. It is always hard to tell if you have a cure because indolent is so slow growing. It may come back or may not for 10 years or never. They will keep doing checks to monitor.

My guess is that all her lymphoma cells had the cd-20 marker which is what Rituxan is designed to kill which probably dictated the treatment of Rituxan only.

In the meantime, her taste is coming back slowly although the sinus infection she had is still active and she is still on antibiotics.

Hope your treatments are going well. Are your blood counts responding?

Lee

If the Pet scan show she is in remission thats ok, but if the cancer was in the bone marrow, they would have to do a bone marrow biospy to make sure its not their no more. The reason is that after my 3rd treatment my pet scan was ok and after they did the bone marrow boispy they found some cancer cell and i had to go back on two more rounds of the chemo, so please look into this. Hope this will help.

We will ask about that. There is another visit scheduled in January. At that time she should be off of her Valtrex. They will be doing some tests although not the marrow or another pet scan. Three months later for the next checkup they will be doing a pet scan again.

They have said the Rituxin is active in her system for 3 months after the last treatment and it is cumulative. So even at the point where they tested her and got the last pet scan, it was still active and working. Assuming that bone marrow is the most difficult to eradicate, it seems to me that you would have to at least wait 3 months following the last scheduled treatment to for a definitive result.

Additionally, they noted the source was the spleen and not the marrow so that would also weigh on this too.

That all said, the marrow question is a very good one and we will absolutely check that out.

Thanks for the “hint”

Lee

Ok, just finished the 3 month checkup. They did blood work only and all tests are showing normal. They said if there was any lymphoma it would at least show up in the blood work as lowered counts in a variety of areas so there is no need for a bone biopsy now. Will continue on a three month schedule for now.

Rituxin last abt 3 months in the body and we are just nearing the end of that now. There is a greatly lowered resistance because of the lack of "lymphocytes" (if I remember correctly) from the Rituxin. Those should build back up by next time.

So, at least for the time being, she is still disease free.

Lee

Hi Lee, you responded to my post has anyone been diagnosed with Stage IV B cell marginal zone NHL. I've been reading all your posts, and I'm so confused with this diagnosis because I don't have so called tumors there masses andmy scans look like paint splatter, so re scanning in april bone marrow biopsy was neg, but the doctors aren't covinced, however I want to ask about your post above. They told your wife that if there was lymphoma it would show in the blood tests. Is that correct, if so then I'm really confused because my labs are all normal. I go tho Josephine Ford Cancer Center, and my dr specializes in lymphoma, but I'm thinking after the next scan getting a second opinion. I'm so tired all the time, and I don't know whats going on. Thanks for all the responses..Jo

Jo,

The original blood test signs of an issue were very low iron which would not respond to any treatment and other blood test that continued to deteriorate. I can get more specific detail but will have to look for our copies of the blood tests at home.

Once we were referred to a hemo/onc they first repeated those basic tests and then did a test on the red cells which showed them to be damaged, accounting for the low iron and the tiredness that was now being felt. Further testing (Pet scan which lit up like a christmas tree in spleen and lymph nodes plus a bone marrow test) sealed the deal and led to the type and diagnosis.

I misread your original post and took the splatter to mean tumor. Yes, that is what my wifes pet scan look like, with lymph nodes and spleen with white patches on them. That shows the extent of the issue but I think the real diagnosis was made with a lab exam of the red cells showing the damage to them. At that Point the bone marrow biopsy was to establish how far it had gone but the diagnosis was already made with the flow cytology.

Check your last blood tests for red cell and iron.

Lee

ya all my blood tests always come back normal. I don’t now all my tests alway contradict each other. I hate that there’s always questions, and the answers always lead to more questions. I guess I’ll just have to wait and see what the next set of tests show. thanks…Jo

Interesting thread. 2nd opinions are crucial & even more, if you feel necessary.

My original diagnosis came back Diffused Large B cell. Those results were sent to the Mayo Clinic for verification, being revised as Follicular Grade 3, Stage 4--bone marrow & spleen included. This was not the result of a 2nd opinion, which I did get prior to going w/a local onc practice as opposed to the likes of Johns Hopkins in Balt, but rather routine practice for that local group. A good move, obviously.

I've had 7 of 8 R-CHOP treatments. A PET scan after #5 said lymph nodes were in complete remission, but there was still bone marrow spots ... clearly, blood tests were the deciding factor. My only bone marrow test thus far was initial, prior to treatment. I'll have another after treatments are completed, along w/another PET scan in the near future.

All lymphoma seems to be tricky, & the deciding factor between being 1 or t'other appears a very fine line. Treatments are designed for individuals, as I've been told by more than 1 onc, from a defined protocol used across the country.

Blessings, all. Great news regarding your wife, Lee! She's fortunate to have such an involved spouse. ; >

Hello,
This is my first time on here as I just got the news from my doctor that I have the indolent B-cell non-Hodgkins lymphoma, (or it could be leukemia- as apparently they are very related).
I have no symptoms at all, and feel fine, but my family doctor referred me to the hemotologist based on high White count in a routine blood test. Later tests of CT scan showed no lymph growths, and bone marrow biopsy test just last week showed some cells.

She wants me to be on Watch and wait, and come for blood tests in 3 months. I don't know much more than that right now, so happy to have any comments from you folks who have been through this.
Q. What else should i be asking?
Q. What are people's experiences with getting a 2nd opinion?

I

My feelings go out to those of you who have been through such difficult treatments-

I think you should get a second opinion, once its in the bone marrow. Don’t wait so long because it may get more serious than you think. Also start do a lot of research you might surprise on the things you can find.
Good luck…

I was diagnosed with NHL 0609 and completed chemo09/30/09. I had 21 radiation treatments in 11/09. Been in remission a little over a year. Good luck everyone. I had a friend that had a rare tongue, throat, tonsil cancer. She was the 5th in the world to be diagnosed. He drs said there was nothing they could do since it was wrapped around her carotid artery. Another dr decided to do an intensive chemo treatment followed by radiation. He had told her it probably would not work but may give her a few extra months. After treatment she had a PET and there was absolutely no signs of cancer. You never know....IT AINT OVER TILL ITS OVER....How's that for encouragement?