One patient with glioblastoma still alive nine years later
by wiggleson on Thu Apr 30, 2009 12:00 AM
I was diagnosed with this last week, and I met my oncologist yesterday for the first time. I feel a bit encouraged, because he wants to be aggressive and possibly get me in a clinical trial. I'll start chemo soon (R-CHOP), six treatment.
He wants to check into a clinical trial where I'd get chemo, then radio immunotherapy, then a stem cell transplant. He said this treatment is having good results, and he thinks I'd be a good candidate.
I'm married and have three young children. I desperately want to exceed the typical ten-year survival for this. That's just not long enough.
I'd love to hear feedback on this suggestion. Is anyone here in a similar situation?
by lj1977 on Fri May 01, 2009 12:00 AM
Hi. Sorry about your diagnosis. I was diagnosed in 2007 with grade1 stage 3 follicular at age 30. I also have little kids. This is a scary time but typically this lymphoma is indolent so you have time to make decisions. Early treatment does effect survival time so take your time.
My 1st onc wanted to treat me with R-CHOP but I got multiple opinions and determined that watch and wait was the best approach for me as follicular lymphoma is not known to be curable and I am symptom free and no nodes are causing problems. I see my onc every 6 months get scanned and blood work. There is a 3% chance of transformation to a high grade every year so the argument is that using CHOP upfront for grades 1, 2 and 3a can limit your choices if your lymphoma transforms.
I joined the site lymphomasurvival.com when diagnosed and it gave me hope and convinced me to treat this like a chronic illness and only treat when necessary .
The lymphoma research foundation has a bunch of great podcasts including one called "I have indolent lymphoma in my 20's and 30's" now what??
It's tough having a cancer where there are so many options but I try to think of it like having a bad case of diabetes. That's what my dr tells me. He thinks I'll have it for decades!!!! So that's how I choose to live. Good luck.
by KYPam on Thu May 07, 2009 12:00 AM
Hello! Your story sounds familiar. I was diagnosed with follicular
lymphoma 05-01-08. I had FND-R chemo and then Bexxar.
My next step will be stem cell transplantation. It has been
a long, tiring year. I have my next PET/CT on the 14th.
I am 42 with 2 daughters, ages 21 and 22. I am still
trying to work full-time which isn't working very
well. I would love to chat with you. Best wishes.
Pam from Kentucky
by Heritage_Softail on Thu May 07, 2009 12:00 AM
I read this earlier yesterday.Trying to help.
DX AO Grade 3 Nov 2007
Cell Therapeutics, Inc. (CTI) (Nasdaq and MTAX: CTIC) announced today it received fast track designation from the U.S. Food and Drug Administration (FDA) for pixantrone, a novel anthracenedione, being investigated for the potential treatment of relapsed or refractory indolent non-Hodgkin's lymphoma (NHL). In granting fast track, the FDA noted that "relapsed or refractory indolent NHL is a serious and life threatening condition and is generally considered incurable. Results from a phase I and phase III study in patients with relapsed and/or refractory indolent non-Hodgkin's lymphoma suggest that pixantrone is active in this disease." The FDA also noted that the proposed phase III trial in combination with fludarabine and rituximab "has the potential to demonstrate an effect on a serious or life threatening aspect of this disease."
by Pattigirl10 on Wed May 20, 2009 12:00 AM
On 4/30/2009 wiggleson wrote:I was diagnosed with this last week, and I met my oncologist yesterday for the first time. I feel a bit encouraged, because he wants to be aggressive and possibly get me in a clinical trial. I'll start chemo soon (R-CHOP), six treatment. He wants to check into a clinical trial where I'd get chemo, then radio immunotherapy, then a stem cell transplant. He said this treatment is having good results, and he thinks I'd be a good candidate.I'm married and have three young children. I desperately want to exceed the typical ten-year survival for this. That's just not long enough. I'd love to hear feedback on this suggestion. Is anyone here in a similar situation? Thanks.
Hi. I was diagnosed (age 41) on 4/10/08. My first chemo was R-CVP; I am in remission after 4 treatments and am nervous about a lump i just found in my arm. I do want to let you know that the "average" mortality rate has increased to 18 years, which made me feel a lot better as I intend to make it 20! In all reality, though, we know that is a variable we both hope to achieve and exceed. The stem-cell clinical trial for your first round of treatment sound extremely harsh...I've been told that it's RCVP and then, when recurrence it's RCHOP, then, if it recurs again, stemcell transplant. I would suggest you get a second opinion based on the unique nature, location and properties of your lymphoma and, more than anything else, I wish you life extended beyond the statistics. I know you will do well. Be strong and courageous!
by docbillnet on Mon May 25, 2009 12:00 AM
Your story is very similar in that I am 41 and just found out I have follicular lymphoma too. But I have the misfortune of living in Ontario, so it will be at least another month before I meet with an oncologist. I found the swollen lymph node January 6th, but they are just so slow here. In any case, you should try not to worry too much about the reported 10 year life expectancy. Most people who get follicular lymphoma are over 55, many over 70. I bet if you took the same age distribution without cancer and computed life expectancy it would be about 10 to 20 years. My research so far indicates there is normally a 30-40% chance the lymphoma will be localized, in which case they can cure it almost 100% of the time by RF. If it is not localized, for the young they are extremely likely to bring it into a remission with R-CHOP that will last possibly decades. By that time they will probably have a cure.
This is not to downplay things. Back in February, I updated my will just to be on the safe side. I have sufficient life insurance to support my family should the worst happen. But I do not expect the worst. I expect to be dog sick though when they treat me.
by adamjstewart on Thu Jun 18, 2009 12:00 AM
I got diagnosed with NHL follicular lymphoma about 2 weeks ago (June 3/09), stage IV. I started my CVP-R regimen a week ago and so far I don 't notice anything different. They say day 8 is when it will show up if its going to. I have a lot of support through friends and family, in reality I don't feel like I have a disease at all. Let's hope it stays that way!
7 more cycles of the CVP-R and we'll see how things are then, probably around Christmas.
I have no life insurance, I'm 37 and I didn't feel the urgency soon enough. Does this mean I am hooped? I don't even have mortgage insurance. I have no kids and my wife and I are not going to have any. So from a financial standpoint I am only concerned about her well-being. Does anyone have any advice about how insurance companies frown upon or not, regarding a 20 year life expectancy form of lymphoma?
by docbillnet on Thu Jun 18, 2009 12:00 AM
The other thing I found out about life expectancy statistics, is they are mainly guess work. 30 years ago, the chemo they had was completely ineffective against follicular lymphoma. For grade 1, without treatment, the average life expectancy is 12.5 years. So right now they barely have enough statistics to estimate life expectancy for the drugs used 20 years ago. The current set of drugs they use double the average length of remission for high grade lymphomia. There has not been time to adequately study the effects on low grade lymphomia.
However, doubling the length of remissions does not mean doubling your life expectancy. There are two competing factors. Doubling the length of remission means it is more likely the same treatment will work again. In that case double the length of remission could more than double your life expectancy. However, the decease that counts against you is the time you spend out of remission, and that time has not been reduced. So your life expectancy could have changed just a little with the modern drugs, or it could have been extended all the way to a normal life expectancy. Nobody really knows, all you have is guess work.
With advancements in drugs and genetics, I expect in 20 years time they will be able to cure 90% of all cancers. So if they can keep me alive until then, I likely be cured.
So I say, plan for the worst, but live for the best.
by Skalla on Thu Nov 11, 2010 12:38 AM
I see your posting is from 2009, so I hope you are get this response.
I too was diagnosed with follicular NHL at age 39 almost six years ago.
My most important advice to you regarding the statistics is that they are based on old treatment methods and due to the 10+ year life expectancy for NHL patients I would certainly view those dates as the bottom end.
I have completed many treatment regimes (radiation, CHOP, RCHOP, RCVP) and underwent an allogeneic stem cell transplant 2 years ago. To my knowledge the only people that are ever cured are those who do the allo transplants. They are nasty, and finding a donor can be an issue, but they have been proven to be curative in nature.
I am fortunate in that I appear to be cured and came out the transplant in great shape and have been back at work full time for over a year. While there are serious risks involved with the transplant, I am glad I did it and am starting to plan for life with a normal life span again.
Best of luck to you down this difficult road.
by crypma on Thu Nov 18, 2010 05:25 PM
I am 45 years old and was just diagnosed. I have my first doctor appt. next week. Any advise? I would like discuss with you if possible. Thanks.
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