In the remissh posish : some statistics can help

Vincera · Regular Joined: 17 Jun 2009 Posts: 44 Location: USA

As I had already mentioned in a previous post, when I was diagnosed with NHL I was also immediately informed that I had a good chance to recover, because of the high success rate of the treatment. This helped me to concentrate on the positive side and I didn’t have too much time to think about it – the first chemo treatment stopped all the Lymphoma symptoms and I knew I was on the recovery track. However, the term “relapse” hadn’t been in my vocabulary nor in my awareness at that time.

Now that I know that staying in remission is not fully guaranteed, I feel that it would be helpful for me to have an idea what’s the chance of recovery success if relapse indeed occurs. Once I know that there’s a good chance, I’d put all this mental noise behind me, and just concentrate on a bright, healthy future. I’d appreciate any feedback regarding stats, or any other mental technique to cope with the uncertainty for the next three years.
_________________
61 y.o M, Diffuse large B cell NHL, stage 3. Lower back. Diagnosed Mid May 09. Completed 6 R-CHOP treatments on 9/8/09. In Remission: 10/19/09

ChemoMan

Hi Vincera

After 3 years of remission the chance of relapse become remote. After 5 years the general consenus would be you are cured.On the up side for you is the rapid response you had as this is a very good sign

Stats are pretty meaningless as there is always a chance of relapse. There is also a chance of secondary cancer due to the chemo, especially if you have had radiation as well, but this is not common at all with R CHOP, but if you get to 5 years chances are you will die of something else.

Unfortunately the "mental noise" never really goes away. What does happen is it gets less with time. Maybe it goes away altogether, I will let you know when I get there Laughing

If you want to play with stats have a look here:

http://seer.cancer.gov/faststats/
_________________
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

Vincera · Regular Joined: 17 Jun 2009 Posts: 44 Location: USA

Thank you, ChemoMan. I'm just at the beginning of the three-year period so you must understand where I'm coming from.
You said: "On the up side for you is the rapid response you had as this is a very good sign." Is this an accepted medical fact? My Onc didn't mention it, although it sounds to me like common sense. Maybe I should ask him.

I’ve developed another mental coping technique and I would like to share it with others. Here it goes:

If a person is reasonably healthy, the chance for him/her to be hit by two different serious diseases is small (or at least, this is what I CHOSE to believe.) Therefore, if I was afflicted by NHL and survived with no complications, my chances of getting another serious illness are now much smaller. I call it “the good side effect of cancer.” Very Happy

Please don't burst my bubble... LOL
_________________
61 y.o M, Diffuse large B cell NHL, stage 3. Lower back. Diagnosed Mid May 09. Completed 6 R-CHOP treatments on 9/8/09. In Remission: 10/19/09

ChemoMan

Hi Vincera

Yes its a fact......there are a few genotypes of DLBCL and some especially those that express a lot of CD20 are very responsive to Rituxam. There is an IPI index which used to be used to predict outcomes but since the introduction of Rituxam this has been virtually made redundant, and what is the key factor now is how well the cancer responds to the Rituxam......Quick response= low chance of relapse. I'm getting ready for work now but I will post back with some links for you when I have more time.

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

Vincera · Regular Joined: 17 Jun 2009 Posts: 44 Location: USA

Wow, ChemoMan, you know so much!
When you have time please explain if and how they could determine that my DLBCL had a lot of CD20. Another question: Since R-CHOP contains 5 different drugs, how can we determine for sure the specific clinical response to Retuxan? They've never checked on me in vitro, to the best of my knowledge, although they have the cells from the bx.
The more I know the more ammo I have when I ask my Onc. Thank you again.
_________________
61 y.o M, Diffuse large B cell NHL, stage 3. Lower back. Diagnosed Mid May 09. Completed 6 R-CHOP treatments on 9/8/09. In Remission: 10/19/09

joepet · Senior User Joined: 18 Dec 2008 Posts: 287 Location: Japan

Hi Vincera (Vincera, VinCHEEEEEEEEEEEEEEEEEEEEEEEEEEEEERAAAAAAAAA!!!!!!!),

Relapse usually results in a stronger second treatment. The current mainstream practice is the chemo regimen of R-ICE (Rituximab + Ifosfamide/Carboplatin/Etoposide) to put you back into remission, followed by a period of harvesting your stem cells for an autologous transplant. Then you have a massive chemo that wipes out all of your bone marrow, followed by re-transplantation of your harvested stem cells to rebuild your immune system (this act is often called one's "rebirthday"). As you can imagine, this is a much more grueling routine, requiring several weeks hospital stay during which time you can have almost no outside contact with anyone, as you will have no immune system with which to fight even the tiniest of diseases, and several months where you will be compromised. The patient would also need to receive all vaccinations once more, as the treatment would wipe out all of the vaccinations received in the past.

Many people go on to a "cure" from this second line treatment, though the numbers are not as good as for first line treatment. Even if that fails, there are several other options available (stem cell transplant from a donor, clinical trials, etc.), so even in the worst case you still have a "punchers chance" of winning.

By the way, my onc told me that he had one patient that "relapsed" after 6 years, so even after the five year "cure" point a relapse is not impossible. So don't use the five year point as an excuse to give up all the healthy lifestyle changes you made post-recovery! Razz

_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

Vincera · Regular Joined: 17 Jun 2009 Posts: 44 Location: USA

You like the famous aria too, right joepet? Since you’re in Japan, how about Madama Butterfly?

Let’s all of us hold hands together and hope that we’ll stay in remish forever!
How’s the health care quality in Japan?
If I remember correctly there’s a national health insurance program there.
How good is it?
_________________
61 y.o M, Diffuse large B cell NHL, stage 3. Lower back. Diagnosed Mid May 09. Completed 6 R-CHOP treatments on 9/8/09. In Remission: 10/19/09

joepet · Senior User Joined: 18 Dec 2008 Posts: 287 Location: Japan

A Pavarotti recording of "Nessum Dorma" is one of my five star selections on my iPod (Paul Potts recently came to Japan and performed a free concert only a few hundred yards from where I work). But like most Americans, though I love "Nessum Dorma", I probably wouldn't be able to sit through more than 10 minutes worth of "Turandot".

I've already commented too many times on my views of Japanese health care system. But yeah, health insurance is affordable, the quality of my care has been excellent, and "medical bankruptcy" is virtually impossible. So I'm in no hurry to go back "home".
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

ChemoMan

[quote="Vincera"]Wow, ChemoMan, you know so much!
I wish you would stop saying that its embarassing Embarassed

.... Like I said compared to my Doctor I know NOTHING !

http://www.sapathology.sa.gov.au/H_ToB.htm

I read a lot and I took time off from work during my chemo....and really its not a lot just a bit more than most.

Over here for relapse DHAP plus autologus stem cell therapy is the norm. No rituxam the second time around. Relapse is tough to treat. 3rd time round and your probably cactus but as Joepet said there is always a chance. With current research into the genetics of Lymphoma you never know whats around the corner !
_________________
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

joepet · Senior User Joined: 18 Dec 2008 Posts: 287 Location: Japan

I strongly disagree with ChemoMan's statement "3rd time round and your probably cactus" The allogenic stem cell transplant has the added advantage of being another person's cells, and occasionally helps kill off the cancer through due to "donor vs graft syndrome" (basically kind of like how a body might reject an organ transplant...but in this case, it is your new cells rejecting and destroying the cancer!) New drugs such as Bexxar and Zevalin have also shown great promise in putting people into a lasting remission.

So at this point, I'd say that the sixth relapse is the point where I would give up hope.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

Vincera · Regular Joined: 17 Jun 2009 Posts: 44 Location: USA

Sorry, ChemoMan that I embarrassed you. I was honestly impressed. You’ll never hear it from me again.

I checked your link but I couldn’t find anything.
I’d appreciate if you can briefly answer these questions or provide links:

1. Are you saying that the IPI risk factor for relapse is obsolete now because of Rituxan?

2. If the patient responds well, how can they determine that it was due specifically to Rituxan and not the other drugs as well?
_________________
61 y.o M, Diffuse large B cell NHL, stage 3. Lower back. Diagnosed Mid May 09. Completed 6 R-CHOP treatments on 9/8/09. In Remission: 10/19/09

ChemoMan

Hi Vincera

My bad...the link was to my Doc's home page.

http://www.presentme.com/FLASH/20071013LRFSchuster/
This is a webcast that talks about genotypes

http://www.presentme.com/FLASH/51029LRFFreedman1/
This one talks about the survival in the rituxan era

There are more webcasts here:
http://www.lymphoma.org/site/pp.asp?c=chKOI6PEImE&b=1574367#

One of them mentions about the change in Prognostic factors after rituxam became a treatment, but I havent got the time now to find the specfic webcast.

Take a look at all of them if you want, they are all very good.

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

Vincera · Regular Joined: 17 Jun 2009 Posts: 44 Location: USA

Thank you, ChemoMan, for the links.
I understand now that most DLBCL cells express CD20, and this is why Rituxan is used.
I'm still missing the data about the correlation between first line response and cure rate.
Here's an anecdotal evidence for the contrary, but obviously it doesn't have a statistical meaning. Someone had DLBCL, but I think it was Phase I or II - tumor was localized mostly in a particular lymph node. Maybe it was also removed surgically, I'm not sure. The patient didn’t respond to R-CHOP (clean PET Scan) until chemo #6, so he had gotten 3 more. This means that his response wasn't that great. Still, he has been on remission for five years now. I think this illustrates that there’s no solid no-relapse prognosis model.
_________________
61 y.o M, Diffuse large B cell NHL, stage 3. Lower back. Diagnosed Mid May 09. Completed 6 R-CHOP treatments on 9/8/09. In Remission: 10/19/09

SingleDad

I'm curious as to what people in remission are looking at as to.

- Recovery time from chemo....best guess to feeling healthy..

- Time after chemo to challenge body ( ie fitness program etc )

- What are you doing if anything to help immune system rebuild.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

Vincera · Regular Joined: 17 Jun 2009 Posts: 44 Location: USA

SingleDad said: “I'm curious as to what people in remission are looking at as to.”

Here’s what I do:
Enjoying every day watching my body and mind resuming normal operation and condition, and learning to what extent I can challenge my systems.

Physically I’m now almost the same as before, so I’m resuming my fitness program gradually. I think that even my tolerance of cold ambient temps is coming back to the pre-chemo level. During chemo my optimal ambient temp was about 2-3 deg F higher
than before. I know it from my AC thermostat settings during summer and my swimming pool optimal temp setting. I think my only physical weakness now is the inner lining of the upper GI system, so I don’t eat spicy food as I was used to, drink very little alcohol, and don’t eat 2 hours before bed time. Although I couldn’t tolerate alcoholic drinks during chemo nor did I crave for them and now I can, I simply don’t feel the desire any more.

I don’t know how to rebuild my immune system and if I need to - all my blood counts went back to normal 6 weeks after chemo’s last treatment. Actually the Hb level kicked back to normal after it had been lower than normal before chemo.

I think the most challenging for me is resuming full skills of the cognitive capacity, especially what is termed “executive functioning.” IMO in this area we need help more than anything else. I asked people who are very close to me and who know me well to monitor the way I talk and communicate and to keep alerting me on everything they notice. I am very much aware now where I put my things and don’t misplace them, and I am not “looking for a word” as often as I used to during chemo time.

I’m also talking slower, especially in work-related communication, thinking carefully about everything I say.
During chemo I felt that my creativity was getting a boost and I am trying to keep it this way. I simply keep looking at new angles when facing almost any mental challenge, no matter how important it is, but within limits.

Maybe we should start a thread to deal with “chemo brain” recovering, because it has been reported that this is a common “side effect” and it shouldn’t be ignored nor denied.
Ignoring one’s weakness is even a worse weakness.
_________________
61 y.o M, Diffuse large B cell NHL, stage 3. Lower back. Diagnosed Mid May 09. Completed 6 R-CHOP treatments on 9/8/09. In Remission: 10/19/09

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