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 , I see this is your first post on this corner of the Online Community but sorry to see the reason why.
Some families do get far to much thrown at them and it is very hard to work through the emotions and practical issues.
My cancer experience does not bring anything that can help you practically but if I was in your shoes I would try to enjoy every moment together and reflect and continue to make memories.
Getting all the practical things in place to support your mum and yourself is very important.
We do have a number of other Macmillan Support Forums where you may want to have a look at as these folks are going through some of the same issues as yourself. If you think doing this can help, join the groups then hit the 'Start a Discussion' tab and introduce yourself.
And I see that you have already posted on the Emotional Issues Forum
I do hope and pray that you get things all fixed up and this time together is a happy and loving time.
Warm Highlander ((hugs))
Hi , I was just having a look through all the threads this morning and came across your post about your ongoing issues with Neuropathy.
I am 39 months post my last treatment (Chemo, Radiotherapy and Stem Cell Transplant) but my first chemo treatment started just over 5 years ago and I can only now say that I am more or less clear of the Neuropathy issues I had.......tingling hands and feet were the main ones.
I did exercise as much as my muscle wastage allowed. I go to a circuits class at my local Maggie's Centre where a trained cancer fitness instructor tailors exercises to suit the problems we all have.
In the early days when I had my very first chemo my hands were very bad. I was seen by a Physiotherapist over the 5 years. She gave me two small rugby balls that I had to use to work my hands and fingers as much as I could...... but even now I find it hard to hold a hot cup of coffee.
The cold weather can be an issue ......being up in the far North you know to wrap up well and warm gloves were essential during the winters. In the early days we got some of these pocket warmers.
I was never given any medication........."you are on enough medication Mike.....let this take its course and we will review it if you don't make any progress"
Keep on keeping on xx
The effects of chemo can go on for a long time and much longer than you would expect so the delay in developing these sensations after your chemo and radiotherapy has been completed can well be the case.
Can it get worse, yes and at times it will get worse before you will see improvement.
My main chemo was 5 years back and my final treatment (radiotherapy, chemo and Stem Cell Transplant) was 39 months ago and I can say that I only felt it had cleared.just before Christmas past.
As a guitar player I understand your frustration.
Non of us can answer a question like the one you are posting. This is for your team to answer so bring it up with them so you can set your mind at rest.
