Life after Hodgkins

smelltheroses said:

frustrating year post chemo
Hi Becky. You are not alone. You really are not. I am lying here in bed right now in the middle of the day still waiting for some energy to get up and attend to my chores before my son comes home from school. I try to get up and get things done before he comes home because he gets upset when he sees me lying down. He is 13 now but he keeps a close eye on me. This cancer experience was very hard on him too. I have not returned to work yet. I was a law clerk before my diagnosis and treatment in a very busy practice; Working late and on weekends was the norm but I was happy to provide a good life for me and my son. I was diagnosed with stage IV non-hodgkins lymphoma on Jan 1, 2010 and well things have never been the same since. My friends were wonderful with me during treatment and even a little bit after treatment but it's almost a year and so since i have been in remission and i think most people are wondering, what's up with her? I mean, the cancer's gone right? I feel so tired, i feel sad, i feel like life is going on around me and i am a ghost, observing. I mean don't get me wrong, i do feel very lucky and so grateful to be here however, i am only 46 but i honestly feel like i am 65.

I just recently found
I just recently found this website and all I have done is read stories that are so similar to mine...Who knew?
I know other people that are cancer survivors(not NHL) and they are able to wrk and do whatever they feel like doing. I was getting alittle frustrated not being able to bounce back. There are days that getting out of bed are impossible. I sleep with a heating pad just so I can get some sleep. Different sites I have visited online about the side effects of cancer drugs don't really tell about the lifetime side effects.
I too have been in remission for a yr. Going through chemo was not so bad but now all that poison is in my system forever. I knew going in that having poison pumped through my body was risky but it was better than the alternative "death" I feel like since I am in remission I should feel like I am in remission, not so yucky feeling the majority of the time.
It is just a comfort to know that I am not the only one out there that is dealing with the same issues as I am.

shelbymae said:

I just recently found
I just recently found this website and all I have done is read stories that are so similar to mine...Who knew?
I know other people that are cancer survivors(not NHL) and they are able to wrk and do whatever they feel like doing. I was getting alittle frustrated not being able to bounce back. There are days that getting out of bed are impossible. I sleep with a heating pad just so I can get some sleep. Different sites I have visited online about the side effects of cancer drugs don't really tell about the lifetime side effects.
I too have been in remission for a yr. Going through chemo was not so bad but now all that poison is in my system forever. I knew going in that having poison pumped through my body was risky but it was better than the alternative "death" I feel like since I am in remission I should feel like I am in remission, not so yucky feeling the majority of the time.
It is just a comfort to know that I am not the only one out there that is dealing with the same issues as I am.

I hope you get this!

Hi, 

My name is Michelle and I had Hodgkins in 2003. I received ABVD and radiation to my chest. My health was good for a few years after treatment but for the past few years, my health has deteriorated. I am sick with an infection, exhausted and sore everywhere ALL THE TIME. I've been to a rheumatologist who found some arthritis but nothing yet to explain my sicknesses and fatigue. My family doctor says I have Fibro and Chronic Fatigue but I am not convinced. I think the chemo and radiation messed up my immune system and I am seeing the effects now. Is there anyone out there like me? 

I am seeing an Immunologist tommorow and he is really my last hope. 

Any suggestions anyone?

Take care,

Michelle

smelltheroses said:

frustrating year post chemo
Hi Becky. You are not alone. You really are not. I am lying here in bed right now in the middle of the day still waiting for some energy to get up and attend to my chores before my son comes home from school. I try to get up and get things done before he comes home because he gets upset when he sees me lying down. He is 13 now but he keeps a close eye on me. This cancer experience was very hard on him too. I have not returned to work yet. I was a law clerk before my diagnosis and treatment in a very busy practice; Working late and on weekends was the norm but I was happy to provide a good life for me and my son. I was diagnosed with stage IV non-hodgkins lymphoma on Jan 1, 2010 and well things have never been the same since. My friends were wonderful with me during treatment and even a little bit after treatment but it's almost a year and so since i have been in remission and i think most people are wondering, what's up with her? I mean, the cancer's gone right? I feel so tired, i feel sad, i feel like life is going on around me and i am a ghost, observing. I mean don't get me wrong, i do feel very lucky and so grateful to be here however, i am only 46 but i honestly feel like i am 65.

Tired

The Roses,

Parts of my story are similiar: I was diagnosed at 53, which is a bit older than the average, with HL, went into full remission, but have been a basket case since. I had some lung damage from the drugs, and stay very weak and tired.  I mostly sleep most of the day on my days off.  I just learned that my iron is way low, and the doc says I am anemic, which is makeing the breathing problem worse. I started iron IVs today. My CBCs are otherwise all normal, and my cancer markers in the results are all good/normal, but the doc is still checking to see where the blood is going (either that, or the iron is not absorbed in my stomach).

I do not feel that I will get more vigor, ever. I am 56, and have been mistaken for a 70 year old ! When I returned to work, several people whom I see only a few times a year did not know who I was when I ran into them after returning.

I guess this is not very "upbeat," but I want you to know that fatigue is the norm, not the exception, and that what you are experiencing is fairly typical.  I am THANKFUL, however.   I give thanks to be here .

max

beckycheman said:

Frustrating year post chemo
Hi all! I too just found this site today and am sooooo grateful. I finished chemo almost a year ago and have pretty alone ever since. I often wonder if anyone else feels the way I do, and after reading all this, I guess you do! I think this year post chemo has sucked more than the chemo itself. I've had some side effects from the chemo which has really thrown a wrench in my life but I feel like my husband just kind of expects me to just get back to normal. He is a supportive husband most of the time but a few weeks ago he told me to just get over it already! I was so pissed but how can you explain to someone who hasn't been through this that nothing is the same? Io have never been in a support group and have had a hard time b/c when I got diagnosed I august of 2010, we had just moved to Kansas from Germany and in July of 2011 we moved to Hawaii. So it's been hard just trying to deal with new people, etc. Anyway, just wanted to vent I guess!
Thanks! Becky.

same here

Hi Becky, You just need him to read post's on this site. I have been through chemo twice, and I got to tell you, I'm lucky if I'm 50 % the person I use to be five years ago. I'm lucky that my wife understands, but other family and friends are a different matter. It is just hard for people to accept...... Vinny

fullyloved said:

Oh, no!

I am soon 5 months past chemo. So far I am feeling the best I have felt in years. The doctors tell me that I couldn't have had NHL more than 2 years, but who knows?

But your tales could give me the willies! How soon am I gonna have all the long term side effects? I breezed right through chemo, worked through most of it, hardly felt sick. Hardly know what side effects are! But from your stories, this could be just the beginning. Thankfully, I did not have radiation and only 6 treatments of chemo. Anyway, I've had to face the fear of long term ill health and decided the last thing I'm going to do is worry. I will enjoy my great health while I have it and deal with the rest if it comes.

Not to worry

I can only speak from my husband's experience, but he started feeling better after his first cycle of chemo and just continued to improve.  He is a year in remission now and still feels better than ever.  He had no side effects at all from the chemo, not even hair loss, and he was a very sick man.  There are so many forms of Lymphona though and different chemos for them.  Some are very hard on the system and others are not.  His thankfully was an easier one and a newer one but it is not used for all lymphomas.  We all share our feelings here good and bad but one thing is for sure, we all care.  You are right, and I know everyone agrees, we are happy to be alive and enjoy every minute we have.  Some of us have it easier than others though and we are thankful for the easy part but wish that the others had it easy too.  So I don't think you have to worry, someone can correct me if I'm wrong, but I think that if you haven't had any side effects by now, you shouldn't have any from that chemo treatment.  We are first timers too tho, some have been around the block more than once, so they know more than me.  I love what Matt 6:34 says and we make this our motto, "never be anxious about the next day, for the next day will have its own anxieties."   Our best to you and keep up your positive thinking. Bill and Becky

LJT said:

HD side effects
Taylorman -I too had Stage IIIB Hodgkins lymphoma. I was diagnosed with it in April 2011 and started chemo in June. I had 6 cycles (12 treatments) of ABVD. I am pleased to report that the PetScan of Dec 10, 2011 showed no active lymphoma cells - so a complete response to treatment. However, my oncologist sent me to the radiation oncologist who is recommending radiation to the sites of initial bulky disease. The main site is around my heart and lung, more toward the left side (originally the mass was 6 inches long and 5 7/8 inchese wide)- the radiation will cover about 30% of my heart which is quite daunting. He will also radiate my abdomin where the walnut size mass was. (The radiology doctor says that there aren't alot of studies on Stage III and IV and that there is controversy as far as whether radiation following chemo for advanced stage disease is warranted. He also said that there are alot of risks associated with radiation and that ultimately radiation causes cancer.

I do not fit into the norm for hodgkins lymphoma - I am female at age 45. I am hoping you can provide me with any information on your experience with treatment - did you have chemo followed by radiation?

I would not...

.

Lfast07 said:

Wanting to start a family 14 years post hodgkins

Hello,

Just came across this site as I am beginning my quest to start a family.

I was diagnosed in1999 with childhood Hodgkins, stage 1a...I was 16 at the time. After 4 months of ABVD my scans were clean. I've been happy & healthy and loving life since then! Now that I'm turning 30 this year & celebrating 4 years of marriage were ready to hear the pitter-pat of baby feet.

Its been 4 months of trying at this point, and I've started to get some thoughts in my head regarding my treatment and whether I will be able to concieve. It seems all that I find are websites recommending that womenfreeze their eggs before chemo and I'm wondering why this never came up with my doc. I now live in France & my Gyno/obgyn has no clue ab hodgkins and my fertility odds, which is pretty frustrating!

Would love to hear some success stories of starting a family post chemo, as I'm sure there are many of you out there....plus it will give me and my dear hubs hope!

Thanks!

Xx, linds

Had a baby after ABVD

First of all, congrats on your survivorship! 

My situation is different than yours but may offer you some hope and insight.  I was 29 when dx and had mantle radition for Hodgkins Lymphoma in 1989.  We had a daughter in 1993 and after her birth we found recurring Hodgkins treated with ABVD.   We waited 1 yr post chemo and I got pregnant with our 2nd daughter, I was 36 at the time.  I wish your obgyn would consult with lymphoma treating oncologists to help you out.  Do you still see your oncologist?  Hopefully they would be able to offer more guidance and info for you.  I'm assuming age at chemo would be a factor but have no idea which way the odds would swing.  There are pediactric cancer survivorship quidelines available.  It may cover this subject.  I believe it addresses the need for close monitoring of pregnacy and delivery as anthracycline agents, Adriamycin, may effect yor heart.  You may be all ready going for annual echos to monitor this.  My intent is not to scare you but to empower you.  Sometimes we need to gather info and insure our Long Term Survivorship is managed.  Here are the guidelines: http://www.survivorshipguidelines.org/

Best wishes and good luck!!!

Cathy