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In Remission & Nervous

clr212s
Posts: 2
Joined: Aug 2007

I was diagnosed with Hodgkin's Lymphoma in October of 2006 when I was 15 weeks pregnant. I did 6 treatments of ABVD while pregnant, had my little boy (who is healthly and perfect!), waited a month and did another 6. I opted not to do radiation since everything I read told me I was basically guaranteeing myself breast cancer in 10-15 years if I did. My mass was the size of a softball in the center of my chest - that coupled with my age and increased hormones from pregnancy made the radiation idea too scary. I finished treatment in April of this year and was told I was in remission. Within 2 weeks I was feeling a lot better without a pregnancy and chemo to drag me down!

In June I started feeling exhausted again and experiencing weird things like coughing that wouldn't go away, intense hives all over my body, inability to concentrate, etc. They ran a lot of tests and told me that they thought it was just residual side effects from chemo.

When I had my 3 month scan in July there was a small spot 1.5 centimeters in my chest that wasn't there before. Because of the location it is too small to biopsy so I was told to wait. Then 2 weeks ago I found an enlarged lymphnode over my collar bone. Basically we are playing a waiting game to see what the lymphnode over my collar bone does. If it gets bigger we biopsy. My oncologist put me on a round of antibiotics to see if the lymphnode will get smaller even though I have no other symptoms of infection. My oncologist has been very kind and concerned. He is like a little mother hen to me. I want to believe him when he tells me that it is more likely that all of this is from other causes rather than a recurrence of the Hodgkins but at this point I'm not convinced. My husband is the only person who knows about this...I can't bring myself to tell my friends and family - getting them all worked up when it could just be an infection. Am I going to feel like a hypochondriac for the rest of my life?

dashdan
Posts: 7
Joined: May 2007

Hi There,
Congratulations on your remission and birth of your little boy. I also was informed that I was in remission about 2 months ago. The new reality of the fear of recurrence is something we have to deal with, although it can be difficult at times. I know this sounds cliche, but if we worry about tomorrow, we'll ruin today. Live for your son, enjoy every moment with him, trust in your doctors, do what you can to try to stave off recurrence (diet, exercise, etc.). A family member has been cancer free for 5 years, and she tells me that over time we will worry less and less. God bless.

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

I agree with dashdan, we have to try and live in the moment! It is so hard as the rest of the world looks at us like nothing happened to us. But to us, life will never be quite the same again. It is so hard not to think about recurrence and every little things makes us think "is it back?" but we are losing today if we worry about tomorrow.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am a firm believer in the power of a word and for me I have never used the word 'remission' when speaking of my cancer. I am an 18 year survivor of non-hodgkins lymphoma and have been unable to go to work after initial treatment due to side effects of the bone marrow transplant I had to have. To me, the word remission carries a sense that it's just a matter of time before it comes back, a given - if you will, and to me that is a very negative thing to assume. I also believe that stress and worry can bring on all kinds of illnesses as well and so I never use the word 'remission'. After 18 years the doctors consider it a cure so why not call it that from the beginning and face the future with a more positive take on the disease, it's gone. If it ever does return then we would deal with it then and of course you worry to some degree but the use of that word 'remission' sticks us to the spot where we are just accepting that we are cancer free for now but it will be back. Wouldn't it be sad to wind up living to 100 years of age after a bout of cancer but then realize that we have lived a much more negative life due to the worry and stress of it returning, at the end? Cancer can and is being cured. I am a living example and there are many many more who have survived much longer than me, many who even had cobalt treatments way back in the day. Let's try and rid ourselves of that dooming word 'remission', hopefully our doctors will end it's use as well. The power of the word is more powerful than we know.

KTCHECK
Posts: 3
Joined: Jan 2005

I was diagnosed in Nov 2003 with stage 4b Hodgkins, my son was 8 weeks old. I also did 6 months of ABVD and no Radiation. After one year 2004 my symptoms returned, and PET scan lit up. We prepared for Bone Marrow Transplant, but God had another plan. It was NOT a reoccurance, but I also have Sarcoidosis. Continue to believe this will turn out Okay. I have been in remission for 3 1/2 years. I will continue to pray for you. Kelly

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

Can you get a second opinion on the lump by the collarbone? If that is what it would take to help put you at ease sooner, I say find out sooner and then you can worry free get on with enjoying your life.

paulettehf
Posts: 1
Joined: Nov 2005

HELLO I WAS DIAGNOSED WITH H-LYMPHOMA AND ENDED TREATMENT JUNE 2006 AND FOUND OUT I WAS PREGANT IN OCT AND NOW I HAVE A HEALTHY LITTLE GIRL.I ALSO HAD THE MASS IN MY CHEST THE SAME SIZE. I THINK EVERYDAY ABOUT BREAST CANCER CAUSE I AM AT HIGHER RISK FOR THAT! I ALSO WAS TOLD IM IN REMISSION AND JUST WENT FOR A PET SCAN AND AM SCARED CAUSE I HAVE SCARED TISSUSE AND SHE WANTS TO MAKE SURE IT DEAD! SO I THINK EVERYDAY ABOUT IT COMEING BACK! SO I KNOW HOW U FEEL I GLAD IM NOT THE ONLY ONE OUT THERE!!!!

vestaswitch
Posts: 1
Joined: Nov 2007

"I think every day about it coming back." Me too. I hope Dashdan's relative is correct that we will think about it less and less. I am having a hard time with this--harder than the original diagnosis.

Kimberly1
Posts: 1
Joined: Nov 2007

I was diagnosed in Feb 2007 with hodgkins lymphoma 2 weeks before my 35 birthday. I was very fortuante that I did not get sick and have a lot of side effects from my treatment. I was able to get thru everything pretty easily. I have now become almost obsessed with each ache and pain I have that I know are symptons of HL. I know that I need to live each day and enjoy my children but I am having a hard time. I also have read a lot of things that state what I am feeling is normal.

mgm42
Posts: 494
Joined: Nov 2007

At age 24, my daughter was diagnosed with Hodgkins. That was June 12, 1991 - 16.5 years ago. She is now 41, has two beautiful sons, and a clear mammogram. She had type 2, stage II. She had a laporotomy followed by 46 radiation treatments. Chemo was never mentioned as a possibility back then. She has some residual problems from the radiation, but to date, she is healthy and happy. Each time we went in for her check up, we held our collective breath. But, things were good. She maintained a positive attitude throughout the entire ordeal, never once thinking about anything less than "CURE." Keep the faith. I wish you all the best.

lorraine107
Posts: 1
Joined: Sep 2008

I am new to this site and to remission - almost 3 months! I liked the entry - and mindset - about not using the term remission. What I think leads to that, however, is having full confidence in your health care provider. I understand from mine in Houston that different parts of the country treat cancers differently. I appreciate your doctors being like your "mom" but that might not be what you need right now. Get a second and third opinion, if necessary. Don't sit back and wait for them to take care of you. For those of us who will live as cancer survivors, I think the peace we have is knowing that our doctors are the very best there are, they are affiliated with the leading researchers in the field and they know the best treatment for us at that time. Don't sit back and worry about it....

positive
Posts: 75
Joined: Dec 2003

Hi Everyone,

My dad had hodgkins stage IIA, 2004 at age 69. He went through 4 cycles of ABVD and 17 radiation treatments. They wanted him to do 6 cycles but he responded so well to 8 treatments, with the deletion of the Bleomycin, they felt he did not need the other 2 cycles. My dad lost his hair, but happy to say it all grew back the same exact way. He lost weight from the chemo which was a good thing. He stopped taking blood pressure meds, because his blood pressure went down due to the weight loss. Anyway, I;m happy to say, it;s been almost 5 yearss and he is doing awesome. You would never know he had cancer. He is very active at 76 years old and travels with my mom. The only thing he developed from the chemo is neuropathy in his feet, which he has learned to lived with. It has not gotten worse. I think he sees the oncologist once a year now. We never look back or worry.

beachgypsy
Posts: 7
Joined: Sep 2008

I had hodgkins lymphoma 7 and 1/2 years ago and was also treated with ABVD. I have been 'cancer free' all this time. I have the same problem with swelling and aching lymphnodes all over my body on pretty much a daily basis. I worried all the time that the cancer was back but it's not. I think it's just another side effect. Try not to be so worried and focus more on the positive. Your son and each and every new day are a blessing...enjoy them to the fullest.

sandybe
Posts: 40
Joined: Aug 2008

I too was diagnosed with Hodgkins lymphoma in December of 2006. I went through ABVD chemo and no radiation at that time. I was in remission for eight months and also very nervous about it coming back. Well eight months later it did come back. This time I had the radiation that I probably should have had the first time around. The tumour has shrunk to 1.5 cm but I am not sitting in limbo not knowing if the cancer is still there or gone. It was not easy to hear that it came the second time, but trust me you get through it just like you did the first time. It is always difficult to hear those words but it does get better over time. Cancer will never leave your mind, but I have found it has gotten easier to deal with over time. I try to lead a normal life like everyone else make the best of each day. I've finally come to the conclusion that I want to enjoy the days I have left ahead of me instead of wasting them by worrying every day. If anything should happen I don't want my children to remember me as being sick all the time and worrying. I want them to remember me as their mother, and how fun times were.

Gaz's picture
Gaz
Posts: 22
Joined: Oct 2008

Cancer is the best thing that ever happened to me (stage 4 NHL). It made me realize that it's not all about me, it's all about you. I listen more and talk less. I treasure the moment with you and I want to hear what your plans are. I already know everything there is to know about me. It's you that counts. It's you I want to learn from. Because of this and more, I hear you. I don't know if your cancer or mine or anyone else's will return. I hope not, but if it does then I'll cross that bridge when it comes. Until then, I choose to live and thank those around me for being who they are - my support, my friends, my family. You know, I think my wife is thankful too for my moments of silence or meditation.

dalecaruso
Posts: 3
Joined: Oct 2007

"Am I going to feel like a hypochondriac" ... not if you don't want to be!
Look ... all of what I am going to tell you ... aside from being RAMBLING ... is something you can digest and/or discard ...
The reality of cancer or any illness that can be life threatening is that WHENEVER that time might come ... that is your time, unless you were to do something silly like play in traffic .. all that it means is that you'll know what you died of ... BUT, the instant you die (in you case I hope that is MANY, MANY, MANY decades) ... in that instant do you REALLY care what you died of??? If not, why spend the time worrying about it now?
I was diagnosed with a terminal cancer in Jan. of 2005 (a rare for of cancer, I was told - Peripheral T-Cell Lymphoma) at the same time, developed a second cancer on my shoulder. That they removed surgically - having to go all the way down to the bone to get all the tumor - by the way we did it on lidocaine - SERIOUSLY. Had a great surgeon and two fantastic surgical nurses and we ALL had a great time in the operating room (by the way it still amazes him that we did it that way.)
The main cancer (PTCL) we hammered for almost two years - with C.H.O.P. and and two "high dose" chemos - one was IVed in for 24hrs/three straight days and the other 24hrs/five straight days ... I had eight sessions of each, with two weeks in between. Once we pushed it into remission (remission with PTCL is - I was told VERY short lived, and each time it returns, the interval gets shorter and shorter.)- Then went through 21 days of radiation to "clean up" the main tumor area. We also flirted with the Mega dose of chemo and stem cell recovery - although I am not a fan of that treatment .. not the stem cell recovery, but I had read studies from Europe calling into question the effectiveness of the Mega Dose of Chemo. However, that ended up being a "no go" as it is also in my bone marrow.
(I did get the last laugh because now studies here indicate the same thing)
It has been interesting - I have seen my doctors go from "we can beat this" to "you know we'll do everything to keep you comfortable" .. LOL. From the start, I had no delusion about "beating this" ... have read too many medical studies (complete studies) to believe that. However, I HAVE READ NOTHING THAT INDICATES that you can co-exist with your cancer.
Now this I am sure will REALLY sound weird .. but I have had conversations with my cancer ... reminding it that the REALITY of the situation is that when I die ... IT DIES, it doesn't magically jump into another person's body! Thus far - and we have run the table with types of treatments - it has blown off everything they have thrown at it ... so it is safe to assume it isn't suicidal!!!
According to all the studies I read, survivability is about 25% beyond three years.
Well, about three months ago, I contacted a pair of research doctors I had met at the NIC (National Cancer Institute) ... told them I needed NEW numbers .. LOL, as I had past that mark. They don't get better, but it is good to know (and again these are ONLY numbers) .. it drops to 22% after four years, and 16% after five - no numbers after that.
I had lunch with them and my oncologist three weeks ago (my oncologist is the most INCREDIBLE doctor that ever took a breath) ... We were talking about remission ... I am in the first remission and I was told that usually it lasts for 9 months .. we (my doctor and I began laughing .. they asked why .. "how long have you been in remission?" I told them .... 24 months now!! What it means??? ABSOLUTELY NOTHING!!!!! It is as it is.
Oh... about a year ago, they discovered thyroid cancer ... it was my choice .. so we removed the thyroid. They wanted to do follow on RAI (Radio Active Iodine) treatments .. but I told them no - even though, I was told that thyroid cancer was 95% survivable after ten years with RAI - about 75% without. Still, NO studies have been done on RAI in a patient WITH another type of serious cancer ... so to me, it wasn't worth ... "gee, let's experiment" ... besides, if I were to be around another ten years to wonder if I should have had it -- my MAIN cancer would be at a MINUS 192% ... LOL, so hell .. I'll be LONG dead!
Look, NEVER take having cancer seriously ... TAKE THE PROCESS OF TREATING IT and doing and not doing what you are supposed to ... but the illness ... DON'T ...
The one thing I will be taking from this "Adventure in Cancer" to my next lifetime is ..
Next time, I will collect rare books, instead of rare cancers!
Just keep remind it that IT'S mortality is ONLY as long as yours!
Look ... just keep this in mind ... Life is ONLY an illusion ... YOU create it ... YOU can change it. IT IS YOUR ILLUSION, YOUR pallet .. paint it ANY WAY YOU CHOOSE!

Dale Caruso

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