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Life after treatment

jentratar
Posts: 1
Joined: Oct 2012

I would really like to chat with someone that has had Hodgkins Lymphoma. I'm a 5 year survivor and my family and friends whom mean so much to me can't relate to what I've been through and continue to go through. I have so many questions and I would like to chat with someone who knows what I've been through and continue to go through on a daily basis.

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hi ,
I understand where you are coming from. Things truly are not the same. I was first diagnosed in 04. Then had surgery on my neck and left cheek.
I did 22 radiation treatments. Then I was home free almost 5 years. One week away.
Then it came back in my right cheek and right neck. Which meant more surgery. Then I was diagnosed with Follicular Non-Hodgkins Lymphoma stage 4. And it was in my bone marrow now. Then did 8 rounds of R-Chop and Zevalin.
And yes I agree with you things are not the same, and family allthough they do they're best do not realize that after treatment it is not over. There are remnants and my blood work still has not totally recovered and I am in remission since Dec. of 09.
I wish you well. Hilde

Pappa Don's picture
Pappa Don
Posts: 39
Joined: Nov 2012

Jentratar:
Hello. I am sorry we get to meet under these stressful circumstances. That last couple of years I have been wishing I had someone who was dealing with similar issues that I have been living with. I just discovered this website yesterday and just now came across you blog. I felt maybe here is someone that I could relate to and share information concerning our situation. So here goes August 2009 I was diagnosed with Large Celled Stage 3 Non- Hodgkins Lymphoma. I consulted with a local oncologist regarding my illness. He informed me that this disease was treatable and usually responded well to chemotherapy and that Chemo got rid of it the likelihood of it not reoccurring we're very good. He said we needed to start treatment ASAP so we did. The next 6 months every 23 days I would get R-CHOP Chemo treatment. Those 6 months were hell for me as you well know. I was in and out of the hospital 5 times my cell count keep getting down to 2 . After the Chemo there was no sign of the disease and to this time it has not reoccurred . I thought alright all is good and I could get on with my life. Boy how wrong I was. I felt terrible all the time. I have some precancerous medical conditions that contribute to my problems. But this was different. I started checking info regarding post Chemo and discovered that about 30% of people who go through Chemo treatment develop some severe complications after treatment. One of them was although you still alive but only feel half alive. Well I totally identified with what I was reading. So myself and my primary doctor started searching for what was causing me the most problems. Just recently (three years later) we discovered as a result of the Chemo Treatment my body had developed an illness known as adrenal insufficiency. I was dealing with extremely low blood pressure such as 70/50 kept passing out falling and falling down. In the last 6 months I had broken a rib, broke my collar bone and broke my ankle so it was paramount we find out the problem. So adrenal insufficiency is malfunction of adrenal and pituitary glands .one body does not produce enough of certain hormones and the result is the symptoms I mentioned. So now I am taking certain steriods to replace those.my body does not produce. It has help some but I still feel terrible most of the time. Another issue that can develop from
Chemo treatment is chronic fatigue. I have a really hard time getting up in the morning and I fall asleep anytime and anywhere. It seems almost like narcolepsy. From what have read there is no treatment for this and some patients can take up to 10 years to recover from it. Well I do not know if you are having any problems like these. One of the best places I found info about after Chemo problems is Wikipedia online. Also I still have nights sweats all the time even during the day. I do not know if you are having any problems as such? I sincerely hope not. If so I hope this gives you a little insite.
I am a little disappointed that none of these was discussed with me before Chemo. But I was we'll taken care of and can nothing but praise my caregivers. Their hopefulness was a big factor in my healing. I hope I have not bored you and look forward to hearing back.

cathtx
Posts: 6
Joined: Jul 2010

Hi!
I am 2 years out from stage IV Hodgkins Lymphoma. I would love to chat. I still am having side effects and do not feel like I am fully recovered from chemo. My onco blows me off but it is real.I would love to hear from you!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Cathtx,

Your situation sounds quite similiar to mine. I ended 12 rounds of r-abvd three yeas ago, and have been in CR. However, I still have serious neuropathy, breathing problems, and fatigue. My oncologist explained what caused each, and has let me know that all are untreatable. What he said agrees exactly with the professional literature I have read. At least he is honest...

I give thanks, of course, for no longer having cancer.

max

NewLife1
Posts: 1
Joined: Nov 2012

Hi, I also would like to chat with someone who understands what I am talking about. It has only been a few months for me, since I have been in remission. I have so many emotions that run through me. It comes from more than the cancer but I think that people around me get tired of hearing it. I feel so much more emtional than I used too, in a negative way. I had stage 3 Hogdkins, at 29 years old, and three children. I am now going through a divorce. Going through this with a spouse that was cheating and abesent from our family when we needed them most was awful. For some reason I lost, by my own choice or because of thier choice my friends from the cancer treatments and the divorce. So I am stuggling with many stressful things. I thought that after cancer life would be some kind of piece of cake. I find it to be confussing. Does anyone else feel more emtional after chemo? I feel like I cant trust anyone, why did I survive, and yet at other times I feel my emtions towards people are dead. I dont like that, I thought I would have more compassion then ever, and in some ways I do. Does this make any since to anyone?

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

My mom just had her first series of RCHOP 3 weeks ago and will have her second very soon. After reading above, it is hopeful that everyone had made it through the Chemo and is in Remission. However, reading the side effects is very concerning. My mom is 82 and I don't know how much she can take and what kind of quality of life she will have after Chemo. She was so active before this. I understand she will never do what she did before, but I am very worried about the side effects. The doctors really do not talk to you about this. Look forward to hearing something positive.

Emily

kidsandliz
Posts: 9
Joined: Jan 2010

What you say makes lots of sense.

I had to work full time through chemo (follicular non-Hodgkin's lymphoma) and my job treated me poorly. My kid was acting out. I had insurance problems. I was unemployed through part of this. I had more than one cancer that year. I was stressed out. It was all I could do to put one foot in front of the other some days. I thought things would be better when I was done. In some ways it is, but in other ways I am dealing with the emotional fall out. Before I had to stuff most of my emotions just to make it through the day. Now I can't keep them stuffed anymore and so I do cry at stupid things. I get angry pretty quickly. I think I am mildly depressed.

You sound like you have some elements of depression. MIght be worth looking into being treated for that. I finally have gotten up the energy to do that for myself and am hoping it helps.

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

NewLife1
It is hard to describe the feelings after having read your situation. The constant battle of fighting cancer, raising and caring for your family and then dealing with your spousal situation, YOU are the strongest person I have heard from in some time. There are some tough times ahead, just with dealing in the aftermath of your chemo treatments, let alone your family situation.
While this network is a great place to find like guidance snd friendship, I hope where you are that there is somplace you can meet with others face-to-face. You may not be trusting of others at this particular time in your life, but personal contact can be such a much more healing force, then letters on a page.
We will be here for you. Questions, venting, ranting and raving can all be found here. Each has its own place, and each can heal in its own way.
Please do not deal with this alone.
Dave

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Jentratar
You have happened along a great resource of understanding and community here.
I too am a 5 yr HL survivor, and have noticed what you have. Family and friends, as much as they try (bless them) do not understand the daily struggles we coupe with.
Common tasks, from walking up stairs or reading your favorite book can seem troublesome at times. This is our bodies way of fighting and trying to deal with the assault that was brought upon it in our fight against cancer.
As you read through the differnt posts, remember each one of us are unique,and what one of us is coping with, or what one of our Oncs have thought was happening to us is not always the same for all. The one thing we do all have in common is that we are all SURVIVORS, and in that respect we are all connected.
We are here for your support and friendship. ask away with any, and all of your questions.

Dave

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