Newly Diagnosed and a bit worried

andrey · New User Joined: 17 Nov 2009 Posts: 2

I am a 31yr old male who was recently diagnosed with Nodular Lymphocyte Predominant Hodgkin's Lymphoma.

The last few weeks have been an emotional ride for me and I am sure most of you can relate to. My lymphoma was an incidental find. I got very sick with a gall bladder inflammation. My doc ordered ct scans and pet scans and ultrasounds because she could not figure out what was wrong with me. In a way I am very fortunate that she did order these tests because she could have easily just prescribed me some antibiotics and asked me to tell her how I felt in just a few days. I currently have no symptoms from the disease. Anyways the tests came back and a few days later I got a phone call from my doc asking me to bring a family member with me to my next appointment. This of course hit me like 90MPH fast ball. The rest is very predictable. The tests revealed 3 enlarged lymph nodes in my body. 2 in my groin one in my armpit. Doc was worried because one was over 5 cm in diameter. (HUGE for a lymph node).

Biopsy revealed my biggest fear. The surgeon said of all cancers this is one of the most treatable and asked me to be positive. I am very positive and from day one I have been telling myself I will beat this thing. I am also surround by amazing people who have supported me from day one. I understand these are great contributing factors to a good outcome.

My treatment has been delayed because I will need to have my gall bladder removed prior to treatment. Another attack during treatment could be catastrophic. I just want this to be over as soon as possible but they are in no rush right now.

Anyways I do have a few questions and a comment:

1. My treatment will most likely be ABVD, once every 14 days for 6 to 8 months. I need to know how much has this affected your professional life. Doctor says I should be able to live a fairly normal life but I am a very hands on Director of Operations for a very busy South Florida hotel and I am wondering how much of an impact this will have on my professional life.

I am also overweight. I am told I will most likely shed quite few pounds which I am looking forward to and I am also looking forward to eating healthier and exercising more and having a new outlook for my new life. Could you tell me a bit more about ABVD?
Personal experience not the scientific explanation.

2. My girlfriend and I have been living together for 3 years. She has been very supportive but I do feel she has taken this whole thing a little bit too lightly. I guess the news of a very high cure rate and the doc saying I should be able to live a pretty normal life during treatment has caused her to be a bit too nonchalant about my situation and this bothers me because I know this will be no easy ride. She is probably being very positive but it bothers me. Either way over the past few weeks I have been a bit distant. Mainly because my mind is preoccupied with millions of thoughts but I don't think she understands it and she is now becoming a bit depressed because of this. I am almost certain this is temporary because we do love each other very much but I just cannot help it. Am I being selfish? Have any of you gone through a similar scenario? Did you overcome it? I think once my treatment starts our relationship will get stronger than ever but I am not 100%.

My comment:
I am so glad that there is a place like this one where we can share our personal experience with this disease.

Be strong and positive and we will get through this together.

Thanks for listening.
Andrey

ChemoMan

Hi andrey

So sorry to see you posting here, not the place anyone really wants to be , but hey all of us regulars have been there and come out the other side. HL is the most successfully treated of all the cancers and you can look forward to being in remission when you finish the chemo. The trick is in staying in remission.

The question over whether you can work through this is one that only time can tell. I would be very surprised if you manage to get through it without any time off but people have done it. ABVD is quite tough but I will let the folks who have been through it walk you through that one. The one factor all people have in common is fatigue and by the end of your chemo this will weigh heavily on your ability to work. Going part time may help.

Dont panic there is no need, you will get through this. You will find that remaining positive is actually impossible, so don't knock yourself if you get a litttle down, what is important is that you do not lose your ability to laugh every now and then. Remaining positive to beat cancer is a myth, so bear that in mind.

Good luck with it all, I will leave you to our capable regulars who have had ABVD to give you some pointers.
_________________
Age 53
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..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

Amsterdamgirl · Experienced user Joined: 28 Oct 2009 Posts: 52

Hi Andrey,

I am sorry to hear of your diagnosis. This forum is a great place to vent, seek information and share experiences.

My husband was recently diagnosed with nodular sclerosis Hodgkins and has had two treatments (one cycle) of ABVD. He is also scheduled for 6 to 8 months of treatment. I will try to answer your questions based on my husband's experience so far.

1. My husband has stopped working, mainly because his job required a lot of travelling (flying) and is quite stressful. Also, we live in the Netherlands and the social system is such that he is able to stop work while still being paid so that he can focus on getting well. So far the ABVD has been not too bad. He is feeling fatigued and has some other symptoms such as sore mouth. His white blood cell count also went down too low so he is taking Neulasta to boost this again, and this causes other side effects such as bone pain, but not everyone will need Neulasta. However, all of these side effects have been quite manageable thus far. He has a healthy appetite (for him, he needed to maintain weight as the lymphoma caused him to lose quite a bit of weight).

2. Speaking from the "other half" perspective - when my husband was first diagnosed, I definitely didn't want him to worry about how I was coping so I really tried to be cheerful and positive around him. I did feel that my husband was distant too but I put that down to him having to process the diagnosis and deal with his "new reality" for the coming few months. We really found the period between the diagnosis and the treatments starting very hard. You are in limbo and there are all these thoughts going around in your head, and each person deals with this information differently. You also feel helpless because you know the diagnosis, but the treatment and how you will react is an unknown. Once the treatment started, we actually felt better because at least something was happening and whatever effects of the treatment would occur, we would deal with. Sometimes worrying about the treatment felt worse than the treatment itself.

My husband always believed that he had to be the strong one, and I think that's why he kept a lot of his thoughts to himself. For me, I wanted my husband to know that it was ok for him to be scared and that I would be there for him. So I guess my advice would be to try to talk to your girlfriend about what you're feeling. Let her know that you have a million things in your head right now, what some of these things are, that the next few months WILL be tough, but together you will get through this, and you will need her support and love.

When do you have your gallbladder operation, and when do they think you can start the ABVD? In order to get diagnosed my husband needed to have surgery in his chest to remove a lymph node near his lungs for biopsy, and he was able to start ABVD about 2 1/2 weeks after the operation. Coincidentally, he had his gallbladder removed 4 years ago and he said the gallbladder operation felt similar to the chest surgery he had, so hopefully, you will be scheduled for your gallbladder operation soon so that the ABVD can start soon after that.

Sorry this is so long. Stay positive and I wish you the best of luck.

andrey · New User Joined: 17 Nov 2009 Posts: 2

Thank you both for responding. I truly appreciate your words and for sharing your experience with me. Things do make a little more sense to me now. Today I found out my diagnosis changed to Classical Hodgkins. Treatment will be 6 cycles of ABVD. Looking forward to getting this treatment started and putting this disease to bed.
_________________
Diagnosed with Nodular Lymphocyte Predominant Hodgkin's Lymphoma in October, 2009
Stage III
ABVD treatment set to start near end of December.

	Cancer Forums Forum Index -> Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others