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My NLPHL diagnosis

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

Hello!

Since I was already commenting another post I wanted to introduce myself officially on this board :-)

My name is Stephan, 34 yo and from Frankfurt/Germany and I was diagnosed with NLPHL on 24.03.2017 (details on my page)

The stage is still unclear but most likely IA-II when they won't find anything in the bone marrow next week on tuesday.

I was so happy to find this forum with so many friendly people. Here in Germany most people in these kind of forums seem to be bitter and angry and I would like to surround myself with others that are optimistic and realistic.

I will definitely update here everything that will happen within in the next week and hope I can have dicussions about what therapy would be the best since i figured out that when you ask 3 different oncs you will receive 5 different answers on what is the best. Still I also believe that this whole thing is a big business where you have to be careful about everything. 

po18guy
Posts: 1009
Joined: Nov 2011

Wilkommen! (Aber, Ich spreche nur ein bißchen Deutsch!). It is clear that Hodgkin's has a very high rate of "lifetime remission." It is a well-known lmyphoma and treatment is well establsihed. You also have the advantage of being young and healthy - other than the Hodgkin's. So, that predicts a good future for you. There are quite a few Hodgkin's patients here and they will be glad to help you. 

lindary's picture
lindary
Posts: 658
Joined: Mar 2015

We do have a lot of positive vibes here. Even the negative vibes seem to turn positive. The main thing is there is also a lot of support for each other.  Sorry you have to be part of a group like this but I am glad you found us. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Sorry you have to be here but glad you found this wonderful forum.  I didn't find it until almost a year after I was diagnosed.  Everyone's journey is different and I can only speak from my perspective.  I was extremely positive not because I'm a super positive  person (perhaps I am) but I had no choice.   You see my father was diagnosed three weeks after I was and I knew if I told him it would kill him.  Something about being my father's only daughter.

My cancer diagnosis was rather a shock for me because always lived to healthy, clean and athletic life.    It can make you a bit crazy in the beginning but things will calm down when your diagnosis becomes clear and your treatment plan is in place.   I came out the side  and realized that my diagnosis was not all that horrible.  It could be worse and if I have an expiration date (we all do) then so be it because I will just live my life better and with more purpose.    I don't take anything for granted anymore and refused to sweat the small stuff.   My life is meant to be lived, to be happy and appreciate everything even the ugly.  I like to help people when I can and realize when I can't that's OK too.

Best of luck to you and feel free to reach out every step of the way.

 

On a different note, 2 years before I was diagnosed I traveled to Stuttgart to pick up my car at the Audi forum. It was a wonderful experience.

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

Hello!

First let me thank you for your warm words, it reallly helps. Although I know that I have the "best" cancer one can get, I have my ups and downs during the last days. I think it's the word "cancer" that we all connect with death.

I wanted to inform you about my further "progress":

My bone marrow was not involved so I'm in stage IIA right now.
During the last days I was in contact with all kind of oncs and also with the "German Hodgin Study Group".
The results are disillusioning.
The GHSG told me that the commmon treatment would be 2 cycles of ABVD and afterwards 20 grey IFRT.
Antother Onc told me that because of the close range of all 5 pathologiacal lymphnodes, we may can also consider IFRT alone, but he wanted to have another talk with the radiologist before.
I was confronting the GHSG with this suggestion and they told me that they cannot tell me really what's in the end the best for me. On the one hand, IFRT alone would be less toxic but mayI dont get in full remission. Also if I'd decide for a combo with ABDV, they would only have to use 20 grey instead of 30 grey compared to when I do IFRT alone.
On the other Hand if I decide for the combo, the CR rate would may increase but may I would get long term effect which I wouldnt have gotten, if i chosed IFRT alone.

In addidtion I also read about the quite new Involved Site Radio Therapy which shall be the same effective but less toxic and I wanted to confrontate my onc with this as well now.

My current result is that there are not enough datas for this specific cancer and therefore all patients are more or less guinea pigs.

How are your thoughts about the whole situation?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

Stephan,

In the US also, Lymphoma treatment is usually a choice among a variety of options.  And they consist of an arrary of differing chemos, maybe radiation in varying amounts, and combinations of all of these.  Although NLPHL is less studied than many forms, it is more studied than others: T-cell diseases, Mantle cell, und so weiter.

As I have stated before, whatever you and the doctors decide upon will very likely work, very likely forever. There are no guarantees in this, never a perfect selection to be made.

I got prostate cancer a few years ago, and the situation in treating it is ten times more confusing than Lymphoma. The Prostate Board is always full of guys arguing about how to best begin; there are literally too many options to make first-line (initial) therapy an easy decision. Surgical removal of the gland alone; radiation alone (and there are many forms of radiation to then choose from); Active Survellance; any or all of the above with Hormonal therapy added.  It is a tough call for each man, and the doctors won't make the choice for the patient.

I would not say that we are lab rats. Most or all of the options you mentioned are NOT experimental, they are established cures with high success rates.

"My thoughts on the situation" are that it is a stressful situation, with choices that we have to make.   But most are good choices with a promise of success. You suffer from being too intelligent, too demanding to know things (I write with irony here).   Most patients ask what a doctor recommends, and go from there, never looking back, many not even knowing what the options were. There are many tens of thousands of new cases of Lymphoma annually, but not even a tiny fraction use this Board. Probably few of them do any form of research.  

I speak to many people who did chemo for differing cancers. I ask them what drugs they used, and most don't know. This astonishes me, but I am just more like you.

max

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

Vielen Dank, Max! :-)

But which kind of therapy would you recommend me (as I have seen you read a lot about it as well). Like I said, so far the oncologists gave me 2 different options: IFRT alone (30 grey) and 2xABVD+20 grey IFRT.

I know you're not a doctor and cannot give me the ultimate answer as well but neither the doctors can so I am confused all over. I read so many scientific researches about it and all of them had different outcomes and conclusions.
I just would like to know another opinion from a non medic.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

I would maximize the ABVD, minimize the recommended radiation (as few radiation applications as the doctors are comfortable with).

I also would request that Rituxan be added to the chemo. R-ABVD is the norm agains NLPHL in the US. Rituxan kills the CD-20 cell, and among Hodgkin's dieseses, ONLY NLPHL has the CD-20 cell. This causes some doctors to not think of Rituxan in treating Hodgkin's, but Rituxan is of great value in combating NLPHL.

Cash value of my thoughts is approximately one litre of a strong German lager,

max

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

Thanks for your assessment, i will definitely ask the onc for Rituxan.
I don't know if I would do you a favour with 1 ltr of german lager, since US beer is what we consider as water, the risk of an overdose may be to high! ;-)

StephanF's picture
StephanF
Posts: 10
Joined: Apr 2017

Today I had a talk with my onc and he said that he wouldn't recommend Rituxan because he thinks it will be too toxic for my early stage (I told him about the CD 20 Protein which is specific for NLPHL).
He also would like to treat me with 2x ABVD plus 20 grey RT. The same reccomendation, as I already wrote before, I got from the "German Hodgkin Study Group" which seams to be world-leading in treatment of Lymphomas (At least all kid of english studies from abroad I read relate to this group).
I'm not afraid about the treatment at all, just all over concerned about the effects (especially long-term) and I don't want to treat too less neither too much.
I did a lot of research now and think I did all that's possible for a non-medic and will give my trust now into my onc hands.

Because of all the time that passed by since I had my last CT Thorax (February 2017) I will have to get a new MRT which also will include the throat. But since NLPHL is so indolent I don't think they will find there something right now.

So I will take the above written treatment now and hope for the best.

skaterdad
Posts: 16
Joined: Sep 2017

StephanF. It sounds like we are in a similar boat, both in our 30s, both have NLPHL diagnosis that was indicated by enlarged inguinal lymphnodes.

Unless I am just missing your posts on another thread, I am very interested in a check-in from you to update us on how the radiation+chemo treatment went for you.

Sending my best wishes from California!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

Your doctors's plan seems very solid to me, Stephan, and matches what most American doctors would do for early-stage NLPHL. Early NLPHL often has both radiation therapy (RT) and chemo. Late-stage NLPHL is virtually always, in all countries,  only chemo, but LOTS of chemo.

Your prognosis should be excellent, and with so little ABVD, long-term side effects are extremely unlikely.

Please continue to share your experience here,

max

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Well I have been stalking this forum and decided to join in case I have an experience that might help others.

I am 53 year old male with NLPHL and T cell rich NHL Lymphoma. I have completed 3 RCHOP treatments and 2 intrathecal (spinal infusion) treatments. If all goes well I am halfway through both types of treatments.

I will get a scan before my 5th RCHOP treatment. I have researched  and had 2 second opinions on the course of treatment . I went to 2 local oncologist and to MD Anderson in Houston, Texas. All the ONC advised same course of treatment. The first round of RCHOP melted away the visible tumors within 10 days. I am not sure how the cancer on the inside responded. I guess I will know that when I get the PET scan in about 5 weeks.

I know this type of Lymphoma is rare and having both types at the same time a little more rare. 

First RCHOP treatment went ok . I had the Rituxin the day before the Chop for the first treatment since Dr was concerned about tumor liysis. I had some reactions to that but none on treatment 2 and 3 and those were same day as the CHOP. Hair started falling out after week 2 after treatment 1 and I justed shaved it off.  The nurse giving me my first treatment also gave me the flu so I was in the emergency room  after the first treatment. They just diagnosed the flu and sent me home with Tamiflu.

My WBC/Neutrophils keep dropping on day 14  instead of day 7. The Neutrophil has been 400 and 600 so I was put on antibiotic and Neupogen shotS. Treatment 3 I was given Neulasta the day after treatment.

The prednisone throws my blood sugar out of whack for about 7-8 days. I am not diabetic but for those days I am. I can manage it with diet. My only other side effects have been fatigue and constipation. I stay on laxatives and stool softners the day of treatment and about 7 days afterward until things get back to normal.

I am just carrying on waiting to see the outcome. Hoping for the best and planning for my family if things do not go as hoped.

 

 

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Well I have been stalking this forum and decided to join in case I have an experience that might help others.

I am 53 year old male with NHPHL and T cell rich NHL Lymphoma. I have completed 3 RCHOP treatments and 2 intrathecal (spinal infusion) treatments. If all goes well I am halfway through both types of treatments.

I will get a scan before my 5th RCHOP treatment. I have researched  and had 2 second opinions on the course of treatment . I went to 2 local oncologist and to MD Anderson in Houston, Texas. All the ONC advised same course of treatment. The first round of RCHOP melted away the visible tumors within 10 days. I am not sure how the cancer on the inside responded. I guess I will know that when I get the PET scan in about 5 weeks.

I know this type of Lymphoma is rare and having both types at the same time a little more rare. 

First RCHOP treatment went ok . I had the Rituxin the day before the Chop for the first treatment since Dr was concerned about tumor liysis. I had some reactions to that but none on treatment 2 and 3 and those were same day as the CHOP. Hair started falling out after week 2 after treatment 1 and I justed shaved it off.  The nurse giving me my first treatment also gave me the flu so I was in the emergency room  after the first treatment. They just diagnosed the flu and sent me home with Tamiflu.

My WBC/Neutrophils keep dropping on day 14  instead of day 7. The Neutrophil has been 400 and 600 so I was put on antibiotic and Neupogen shotS. Treatment 3 I was given Neulasta the day after treatment.

The prednisone throws my blood sugar out of whack for about 7-8 days. I am not diabetic but for those days I am. I can manage it with diet. My only other side effects have been fatigue and constipation. I stay on laxatives and stool softners the day of treatment and about 7 days afterward until things get back to normal.

I am just carrying on waiting to see the outcome. Hoping for the best and planning for my family if things do not go as hoped.

 

 

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