New here, follicular NHL for a while now

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

Hi, everybody! I was diagnosed in Sept 2008 with Stage 4 Follicular NHL. This was based on bone marrow involvement. Because the report said "suggestive of lymphoma" instead of "definitive for lymphoma" I went to Sloane-Kettering for a 2nd opinion. They said, no, you are Stage 1 and recommended localized radiation and talked of a cure. I had the first course of 20 treatments and went for my scan and "surprise" here is another spot of localized involvement so we want to use radiation on that one too. (now I am Stage 2, I'm waiting for one of them to say Stage 3 so I can complete the hat trick). I said okay so went through my next 20 rounds of radiation. Meanwhile my medical oncologist is saying "watch and wait" but my research says that this is becoming old school. So, I agreed to wait for my next scheduled scan which is on July 20. I have a bunch of new lumps so expect a negative outcome. If that occurs, I will see what my med onc has to say but I am leaning toward finding a new doc who will be more aggressive with chemo and monoclonal antibodies if I still have active disease. The challenge is that, with an indolent NHL, there is a good chance that neither choice is particularly good for extending my life from what the research indicates. However, for me, when faced with this situation, it was and is very important that I be in charge of my choices. I think I am achieving that by becoming educated and by insisting that my medical team make me a full member of the decision making process. Challenge your caregivers to validate their recommendations so that you have the informed basis for making the decisions that will determine both the length and quality of your life. I am going to continue doing this because among other benefits, it provides me with the sense that, despite this awful situation I have been handed, I am still in charge of my life. To me, that is very important in maintaining my positive outlook. Good luck to everyone and may the treatment you endure be both less traumatic than you anticipated and more successful than you hoped for!

Don

I agree with everything you said. Please visit the thread I started entitled:

Treating Asymptomatic Indolent Follicular NHL?

I also have indolent follicular lymphoma and there is alot of different viewpoints as to how to treat it. But with it being indolent, you can take your time and not have to rush into things.

Please visit this website and watch the podcasts; perhaps you already have. These influenced my decision immensly:

http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1574367#

Good luck.

Don
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

Hi, Don, thanks for getting back to me, I appreciate it. Yes, I have watched the podcasts and found them both informative and useful to me. I am still deciding how aggressive I will be with my medical team following the next scan on the 20th. btw, do you or anyone else out there know the clinical difference between C/T and PET/CT scans? I seem to be reading that C/T is sufficient for diagnostic purposes with Follicular NHL but I have consistently had PET scans followed by contrast C/T if there is a questionable result.

How is the treatment going? I hope you are tolerating things well.

I seem to remember from another post that you were in the Marine Corps (or do I have you mixed up with someone else)? I spent 9 years on active duty which, between exposure to radiation (I was a radar tech) and solvents may have had something to do with my situation today. Just as an fyi, if you were ever stationed at Camp LeJeune (between 1957 and 1986) you should visit this site www.marines.mil/clsurvey and register for followup information. The government is conducting extensive research into ground water contamination which occurred during that time and which may be contributory to a number of birth defects and diseases including lymphoma. There is a registration site for followup and also a claims center if you are so inclined.

Cheers...
_________________
Press on - Persistence and determination alone are omnipotent - C. Coolidge

Age 58
Follicular lymphoma diagnosed August 08
2 rounds (20 each) localized radiation to tumor sites
Remission confirmed July 09

Don

Hi,

I chose the R-CVP rather than the more aggressive R-CHOP. Read my posts on Treating Asymptomatic Indolent Follicular Lymphoms. I think I listed the reasons out fairly well. My oncologist gave me the choice.

Treatments are going very well. I seem to be tolerating them nicely. The only thing I backed out of because of the treatments was driving long distances. Because of the prednisone, drinking lots of fluids and having to make constant, urgent head calls, long driving was misesrable...I did it once and payed for it. So I refused to make a committment for next week, which was to drive someone from Ronald Reagan Airport to Blacksburg, VA...a 5 hour trip.

The only time I was at the "Swamp" was in 1972 for the Engineer Course and that was only two months. I've been there off and on for TAD trips, but nothing permanent. I don't/can't blame my lymphoma on anything...but I will check out the website.

The PET scan uses the normal CT scan, but before you go in they inject you with some kind of radioactive sugar solution. As cancer cells thrive on sugar, these "hopped up" sugar molecules go to the cancer. Thus, when they run the CT scan, the cancer cells show up like fireworks. I think that in layman's terms, that pretty well describes it. It is very expensive and there are only two PET scan centers here in the Washington DC area.

Good luck with your decisions.

Semper Fi...Don B
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

I don't blame my service, Don, but do find the possibility of a causal relationship interesting.

Your treatment post is excellent background and mirrors a lot of the research I have done to date since I have been at this for a year now. I found the first lump in June of 08 and got formally diagnosed in September. I too had thought that CVP-R makes more sense than CHOP-R to start with FL treatment should the scan show positive. I think not using the silver bullets makes a lot of sense...in fact I have used up the radiation bullet at this point already.

Your explanation of PET vs C/T makes sense so I guess the next question is why are my docs using PET routinely (I've had 4 of them so far) when it is so much more expensive if it doesn't provide a clinical or diagnostic advantage. I have outstanding health insurance so money has not been an issue for which I am very thankful.

Anyway, good luck with the rest of your treatment plan. I will update this after I get the scan results but do expect that they are going to measure some progression based on the new lumps under my arm...I am very willing to be wrong, of course!
_________________
Press on - Persistence and determination alone are omnipotent - C. Coolidge

Age 58
Follicular lymphoma diagnosed August 08
2 rounds (20 each) localized radiation to tumor sites
Remission confirmed July 09

Don

If your insurance is not fussing about the PET scans, then keep on going with them. Either way, you are still getting the same amount of radiation from the CT Scans...which is another subject. Confused

Good Luck...DonB
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

ChemoMan

Hi Guys

The CT scanner in the PET scans gives a lower dose of radiation than a normal CT scan. PET scans also give a much clearer clinical picture. Once a year should be enough with two given during treatment, one half way and the other a month or two after treatment is finished.

Cheers
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

So, four in a year was a little much,eh? Oh, plus two contrast C/T and a few xrays thrown in for good measure.

Thanks, Chemoman but somehow I don't think I will hit the once a year track until I have this thing whipped into remission (which I don't think is yet but they will tell me at the end of the month). Right now, if I have new tumors, I am thinking to go the same way as Don with CVP-R. I am also still thinking about getting a new MD as the one I have now has been a little soft on this disease. For example, he states that he has never seen a FL patient transform into DLCBL but all of the literature says that you have a 3% per year probability of having that occur.

I will be challenging him on this point and some others when I see him at the end of the month. Thanks again to both of you, I appreciate the feedback!
_________________
Press on - Persistence and determination alone are omnipotent - C. Coolidge

Age 58
Follicular lymphoma diagnosed August 08
2 rounds (20 each) localized radiation to tumor sites
Remission confirmed July 09

ChemoMan

Hi Kermica

Well 4 in the first year of diagnosis is about par for the course for PET scans. That is one that confirms diagnosis, one half way through treatment , one at the end and one 12 months out. After that one per year. Its really up to you how many you have from here on out. You do get a fairly hefty dose of radiation with PET scans, more so with CT scans so the risk of secondary cancers needs to be taken into consideration and weighed against the benefits.

Cheers and good luck !
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

Don

Hi Kermica,

I see you are driving your oncologist nuts also. It looks like you have read through the thread I started. Anyway, if you have not seen this article it is a good read; it had my oncologist going:

http://www.molecularonc.com/mor/mor010233.html

I brought up the subject of too much radiation from CT scans with my oncologist, and he said it would not be a problem unless I lived to 120. However, my GP said that too many CT scans is worrysome; but then he said that I have a disease that could really hurt me...so they need to have the enhanced imaging.

I see that you live in New York, a liberal State, so you might not have an issue with this, but when you are on Prednisone, your emotions go up and down. There are times when I find screaming at the TV set when watching the news. In Virginia where I live, one is allowed to carry a gun pretty much anywhere. I have a permit to carry a concealed handgun and I regularly carry one with me, especially at night. During Prednisone week however, the ole' "Smith & Wesson" stays home.
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

Hi guys,

I appreciate the feedback on both scan frequency and chemo side effects. I will keep the prednisone tidbit tucked away for when the time comes. You are right about NY, I don't own any guns at this point and where I live is part of it - too much personal data disclosure is never a good thing and they want lots of it in exchange for a gun permit.

sorry for the delay in replying to both, I travel in the Northeast and just got back from NYC. I sell software to government so have to go where the customers are...

be well...Kermica
_________________
Press on - Persistence and determination alone are omnipotent - C. Coolidge

Age 58
Follicular lymphoma diagnosed August 08
2 rounds (20 each) localized radiation to tumor sites
Remission confirmed July 09

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

Hi to everybody...this is just a note to thank whoever told me that they were getting scan results faster by simply asking. Today, I had a followup PET to confirm that the 5 or 6 new lumps I have are or are not new incident points of my FL (which I cannot help but think they are).

The procedure went fine and, when completed, I asked the technician how I could expedite getting the results since I am not scheduled to see the oncologist for another 8 days. To my amazement, she said, see the receptionist and they will mail it to you when ready, normally 2 business days. I then asked about getting the disk and she said she would make one for me today and send it out! I thanked her profusely and went on my way (after arranging for the report to be mailed as suggested).

My point is that by taking charge of your care and becoming your single best advocate for your treatment you can change the much of the experience of dealing with the disease and increase the feeling of being in control of your life and destiny. I have been trying to do that all along but today was a great object lesson to me that I should not miss an opportunity to exercise that control. It is difficult for me to express how much better I feel for having influenced my emotional state and my outcome. One of the really bad parts of this illness is, for me, being at the mercy of the system. Today, I reduced my wait time for results by 60-75% simply by asking and this was a very different experience than when I was first diagnosed and the surgeon who did the biopsy made me wait two weeks for the results for no good reason. My frustration was off the charts as was my negative energy since everyone had already said it was probably lymphoma. I don't know if I was treated differently because I have seen these folks every three months for the past year and have yet to score a positive outcome. It may have been a factor but, either way, the wait time would not have changed if I hadn't asked.

Now, if I can only figure out a way to ensure the report is negative...

Cheers, kermica
_________________
Press on - Persistence and determination alone are omnipotent - C. Coolidge

Age 58
Follicular lymphoma diagnosed August 08
2 rounds (20 each) localized radiation to tumor sites
Remission confirmed July 09

Don · Posted: Mon Jul 20, 2009 8:30 pm Post subject: The Big Picture

kermica,

I agree with you that you did speed up the process; but what are you going to do with the results?

Remember that your PET scans are being read by a Radiologist whom you probably never met and who does not know anything about your medical history.

The Oncologist however, has seen you face to face, has ordered blood tests, has seen your past medical history and is in a better position to give you the "big picture" of what the imaging results mean.

But you were probably able to get things from the report, research them and be ready to talk to your oncologist about them.

This is just a thought.

Thanks...Don B
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

Kermica · Regular Joined: 01 Jul 2009 Posts: 20 Location: New York

Good point, Don...it doesn't really tell me anything except the one thing that is most important to me right now which is: am I in remission or not? When the new lumps appeared about 6 weeks ago, my oncologist was somewhat dismissive and said "let's wait" since the scan is already scheduled. I agreed with him then and do now...

...but I am one of those people that want all of the information, greatly prefer that it not be filtered and expect my advisers to be straight with me as long as they work for me. The reason I am thinking of switching oncologists is that this one seems to have one path for Fl which is watch and wait. That is still a valid strategy but I don't perceive that he is considering the rapid changes that are occurring in treating this NHL. In fact, I get the impression that he does not spend a lot of time with NHL, period.

So, I am thrilled to have the results as soon as I can get them, in an unfiltered form so that I can do research and be in a position to be my #1 advocate from a position of knowledge. It is how I best deal with life so it is surely how I best deal with this challenge in life.

It is just what works for me, Don...have a good night,

kermica
_________________
Press on - Persistence and determination alone are omnipotent - C. Coolidge

Age 58
Follicular lymphoma diagnosed August 08
2 rounds (20 each) localized radiation to tumor sites
Remission confirmed July 09

Don · Posted: Tue Jul 21, 2009 6:12 am Post subject: Prednisone

I had a great night Kermica,

I had my 4th R-CVP treatment yesterday and was up until 2:00AM because of the prednisone.

I didn't want to change your mind, just give you a perspective about radiologists and oncologist and I can see your point. Those CT scans are impossible for me to decipher and I don't even look at them. The radiologist's summary is what make more sense to me...but even then, I don't know what all the words mean.

I also thought my oncologist was not up to speed on Follicular NHL and used information from this forum to bring things to his attention.

Have a nice day; I have to take my granddaughter to swim practice. It is very early and the coffee has not finished brewing...AND I NEED LOTS OF IT.
_________________
Don B
Dec 07 Dx Follicular NHL, Grade I (Indolent)
Stage IIIA - No Symptoms
Watch and Wait - 6 Month Checks
Jan 09 Scan shows Progression - no symptoms
May 18, 09 - Started R-CVP
After Third Round, CT scan showed some tumor shrinkage
July 31,09 - Completed 6 Rounds R-CVP

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