My name is Alex, i'm 21 years of age and i have been diagnosed with stage 2B High Grade Diffuse Large B Cell Non Hodgkin Lymphoma. It came at a rather unfortunate time, as i was just beginning my finals. The tumor was located in the nasopharyngeal area. During the prediagnosis period, i couldn't breath from my nose and could barely swallow. I went through 8 R-CHOP sessions, all of which were handled rather well, with little close to no side effects. After my 6th chemotherapy session, i had undergone a ct scan and an MRI which at the time didn't raise any suspicions. The final outcome had been reinforced by the positive impact of the PET scan, which showed no evidence of disease. However, i was advised to follow a radiotherapy treatment to further consolidate the full remission status. I have read dozens of articles, trying to identify the starting point that allowed this disease to manifest.
Prior to being diagnosed, i was a rather despicable human being. I was depressed and lonely. This "self-induced solitude" had led me to some pretty dark places, both mentally and physically. I would stay home all day, play video games and eat junk food, while my university colleagues were paving roads for their professional and social success. Despite having spent an enormous amount of time with myself, i still couldn't find the roots for all this self-loathing and insecurity. At that time, i was weighing 160 kilograms, which was the main reason i wouldn't get out of my apartment. Aside from the physical appearance, i could barely walk without my back and legs hurting.
A year later, things started to change. I decided to take matters into my own hand and made some drastic changes. Eating healthy and attending uni were on the top of my list. As time went by, things got better. Made a few friends along the way, ditched them in the meantime (roughly in the same period i was undergoing chemo), graduated and started a master's program. I have lost nearly 50 kilograms in the past 14 months, which is one of the systemic symptoms from having lymphoma. It didn't raise any suspicions from our side until the other symptoms started manifesting (night sweats, fever).
The full remission status didn't bring me much joy. I talked to many doctors, and the outcome for this disease seems strongly related to a doctor's past experiences with similar patients rather than logic and reasoning. To give you an example, when i was first diagnosed, my hematologist told me it's 90-95% curable. Later on i found out that their meaning of the word "curable" is often replaced with terms such as treatable/manageable/partial remission/full remission along the way. The second hematologist i had encountered in the hospital told me it's a chronic disease, which will never go away completely. It will recur someday, whether it's in 5,10, 15 or 40 years. The hope is that your death would occur by natural causes or other diseases, which puts the cancer apart as a potential culprit for your life expectancy. After finishing chemo, my parents went to a radiologist who told them that, in my case, cure is a possibility. Just a POSSIBILITY. Further questions were raised when the committee from the same hospital denied my case for radiotherapy treatment. Apparently it wasn't needed, despite the doctor having told us that it's a necessity. With that being said, we went on to search for a second opinion. The second doctor, who is one of the most respected radiologists in Romania, accepted our case and today i have 14 sessions out of 25 completed. The secondary effects are quite obnoxious, as my throat is constantly sore and i can barely taste anything.The back hair has started falling out again, which is great (backlash from my chemotherapy treatment). The emotional tension regarding the use of the word "cure" has not been positively reinforced by this radiologist, as he said that people with this type of cancer live under a cloud of uncertainty when it comes to potential curability. I tend to believe him, since he's been in this branch for more than 40 years.
I have also come upon some evidence regarding male fertility and C-HOP chemotherapy. Apparently there's an 80% chance for men to remain infertile after being given this aggressive treatment. I'm a bit worried about these statistics, despite being only 21 years of age. I don't wanna exclude the possibility of having kids from such an early age. It doesn't seem right. I haven't been notified about this risk before starting chemo either. During this period i was debating with my therapist whether God exists or it is merely a trivial interpretation for something we have yet to comprehend. Ironically enough, before being diagnosed with this disease, i had always wanted to adopt. It seemed like a good choice for someone who envisioned a solitary life.
Is cancer a punishment? Was it God's will to send me a lesson upon which i can reflect? Questions that cross my mind every day. All i know is that cancer found aegis in my emotional instability. Whether or not it's my fault for triggering the disease.
Do you believe this disease is curable? I have seen other articles that suggested that recurrence may lead to other types of cancers, such as Leukaemia, which is far worse.
I could use some answers. No matter how painful they are. I've been on a rough patch for quite a while now. Changed me a lot. And not in a good way.
Hi Stew Cybahous and welcome to the Community. As you see, the support available on the forum is invaluable as you are talking with folks who have walked the walk so can talk the talk.
So “Compairing a heart bypass with taking two aspirins” lol. I actually see everyone’s cancer journey to be an individuals determination to get through this and out the other end and flurish....... and as my tag says - find our destiny. The person I am now is nothing like the person I was over 5 years back......a much better person.
Yes, I have played guitar for a long time. From being a long haired teenage guitar basher, to playing in dance bands, folk clubs and Church.
Not being able to play for over 5 years was just one of the challenging issues that if left, could get you down and take you on an ever increasing downward spiral.......but for me, I made it into a motivation.
As you have found our profiles a great help, why not take some time and put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)
All the best.
Your comment is so true that every journey is so different and that is why when we get asked “what will this be like?”....... it is so hard to answer.
For a large group of people our profiles are like gold as some folks just join the community but can’t get into a position of putting up a post but find the support in our stories - result I say,
Doing your story is actually very therapeutic as you see the distance you have come.
Take care.
Good morning , my path was rather diffrent so my follow up was rather complicated but I am sure that some of the other will give you some info that can help.
But I did have a number of unplanned 'just in case' scans resulting in something that turned out to be nothing in the end. I always think that if my team were being carful and covering all the bases then good. Rather than the soft warm duvet of care that I had been so used to to taken away and left high and dry.
Contact you Specialist Nurse and have a chat as these folks can help to turn the noise in the brain down.
((hugs))
Reduce the stress and the guesswork and call your team xx
