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Terrified of relapse!!!’ Opinions plz

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

 I’m 28 years old and February 2017 I was diagnosed with stage 2 Hodgkin’s lymphom. In April I started ABVD 12 treatments. ( 6 cycles ) I had clear Petscan within 2 cycles and finished my treatment until September 12th! I was not feeling good the week I went for follow up CT i was having coughing and having minor chest pains. I went for my appointment October 17 & my oncologist said there was a very slight increase in one of the lymph nodes in my chest. My doctor told me not to worry but they wanna do a pet scan just to be sure!! I’m so scared is it possible to relapse this fast after chemo with such good results? I’m so scared did this happen to anyone else?????

po18guy
Posts: 989
Joined: Nov 2011

First, do not think relapse since that is only a suspicion. Suspicions are not proof. Sometimes, they are not even evidence. Still, many many cancer patients do have relapses. They deal with them when and if they occur. I have relapsed twice, and mutated into two aggressive sub-types. My prognosis was so incredibly poor that there is not a word to describe how poor. I developed a secondary bone marrow cancer from treatment. I ask: So what? I am still alive, still happy to be alive and living the life I have been given - a day at a time.

You do not have cancer (again) until a pathology report says you have cancer. Enjoy today, as your greatest risk is driving to see doctor!

Peace and good!

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

I finished my treatments July 3. In September the PET scan showed activity. My Oncologist ask me to go out to MD Anderson in Houston. I did last week and they did a PET scan and CT with contrast and said “ all clear”.  I cannot say yours is but it does happen.

Wishing you the best.

Sandy Ray

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

Thank you both for your postive feed back! I hope it’s nothing & happy to hear your both doing well!

kdunagin
Posts: 7
Joined: Oct 2017

LacieAnn,

I had Diffuse Large B Cell Lymphoma, had gone through RCHOP and radiation and was in remission exactly two years ago this month. Then the week before last, during a usual blood test, it was found that the LDH shot up to 359. During the time I was diagnosed, it was around 200+ and after the treatment, it hovered around 154-174. My Oncologist ordered another blood test, which is scheduled for next week. So, yes, like you, I am worried. But after reading several posts on this board, I found an encouragement to face it if there is a relapse. In one of his posts from po that I will never forget. He said Lymphoma is cancer in the blood. We all are in a better shape than those who have cancer in solid organs. With something in the blood, you find it, kill it and put it in remission. 

po18guy
Posts: 989
Joined: Nov 2011

Commit yourself to never be "terrified"! That only gives power to the disease. To be terrified means, at some level, to cower in a corner. Never! Rather, any cancer, or any relapse is the bully who just entered the room. Even though we may not be natural fighters, the fight has been brought to us. So, we stand and fight!

Why?

Love. We must always bear in mind that love is the greatest force on this earth - even though it rarely makes headlines. We love others and they love us. That is why we stand and fight.

Never panic. Never give up. Life is worth living.

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

My doctor didn’t even call to schedule my pet scan yet! I suffer from anxiety before cancer so I’m a mess I’m trying really hard to just stay calm and pray and hope this isn’t back. I literally just finished chemo 4 weeks ago if it is back so soon I don’t know what to even think...I just wish I can get the scan done ASAP the wait game is the worst.

po18guy
Posts: 989
Joined: Nov 2011

Wondering what you are doing to deal with the anxiety? Many therapists are stressing counseling rather than anti-anxiety drugs - which is a better solution, actually. First things first, as no one has told you that you have cancer - you only suspect it, and it is probably the anxiety talking. But, anxiety cannot help you under any circumstances, right? Jump on it! Crush it! Chew it up and spit it out. Yes, it will take some doing, but it will be worth it. 

Then, you can live life in peace.

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

My oncologist put me in Ativan before I even started chemo. Prior to this I never took meds for anxiety I just dealt with it and calmed myself down. I think my biggest question is can classic Hodgkin’s come back this quick? i had clear results within 2 cycles, everyone says it’s so curable. I’m just so scared 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

Hi Lacie.

I have been following your thread here.  I was similiar to you, except widespread (neck to pelvic region, and across both sides) Stage III with NLPHL Hodgkins, the only one of the five strains of HL that is not classified as "Classical."  Of the 4 Classical types, most are usually not highly aggressive.  I also did 12 infusions of ABVD, and mine also was knocked back by the 3rd infusion or thereabout.

Nothing in your CT report strongly suggests relapse.  The doctor did not specify what one node appearing "slightly larger" means.  It went from x mm to y mm ?  CTs can vary slightly in showing node size. Not much, but some.  After total remission from HL, I was followed 2 years for a tumor in my lung, which hasa since been assessed as benign.  It NEVER came back as the exact same size twice, but the Pulmonologist said it was so small that imaging it was difficult. 

So you actually have very little reason to be worried at this point.  The cough and sensation in your chest absolutely could not be related to a microscopic increase in the size of one node, so that experience was indeed almost definitely unrelated to HL.  It could possibly be related to residual Bleomycin in your system, but doubtful if you were not having cough earlier in treatment.

Rapid relapse of Stage II CHL following 12 infusions of ABVD would indeed be extremely rare after C.R. was achieved.

I too was handed an Ativan perscription at my first meeting with my oncologist, and he said, "Go get this now."  You never needed it before ? Well, you never had HL before !  Objectively, it would stress anyone.  I ate Ativan the whole experience, but was able to walk away from it at the end with no problems, but I am a very non-addictive physiology (I once was in ICU for 25 days and on IV morphine for 23 of those days, and going cold turkey only bothered me a little for one day.)   If I were extremely stressed and still have the perscription available, I would use some as needed to get through this wait.    

Oncologists are slow to respond.  Undoubtedly he does not see the upcoming PET as an emergency, and may have just taken the first-available scheduling date.

I wish you peace of mind and heart. To this outsider, it seems you most likely are not in relapse,

max

LacieAnn728's picture
LacieAnn728
Posts: 34
Joined: Oct 2017

Hi Max! 

my oncologist told me it was a slight increase in the lymph nod in my chest. She didn’t get into detail with me , my blood work was fine but she feels I needed another pet scan I guess. Thank you so much for your reply it helped ease my mind a lot. I go this Friday for my scan so fingers crossed. I’m happy to hear your doing well! 

Cancer Whimp's picture
Cancer Whimp
Posts: 1
Joined: Nov 2017

Hello Beautiful People,

It's been two years since my Dx w/ Hodgkins. I went through Stanford V, but "failed." Added two cycles (6 weeks) of BEACOPP (the German Protocol - now I know why Germans are tough! LOL). Did a month of radiation. All my scans have been good - lymph nodes show stability or reduction in size. ...But in the last few months, have been "feeling things" in my neck. Kinda sore. Different places at different times, but I think it's my nodes. I remember feeling things near the end of chemo - as they were shrinking. But now I worry that they are sore due to inflammation. I haven't felt any enlarged nodes - and I'm constantly palpating. My 18 month scan was cancelled due to insurance, but damn - I really want it. Anyone have any soreness in their neck after therapy? Like so many of you, I hope it hasn't returned. Started a new job and going to ask my girlfriend to marry me tomorrow...

Patrick

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Hi Lacie,

I haven't come on this forum for a very long time and when I signed in I saw I wasn't the only one looking for the same answers.

I finished my chemo 3 years ago and have been in remission every since (I was diagnosed with stage 2 Hodgkins Lymphoma and did the ABVD treatment). Recently, about  three weeks or so ago my 3 old son had a flu and a week later my husband and I got it but I never felt so sick before. I don't seam to be recovering well and then got everything else, sore throat, ear ache, sinus infection and bronchitis! I've been sick for a little over two weeks now. I lost some weight even though I stopped exercising (I usually excersise 5 times a week) and I don't think I eat that much less but what scared me the most is that I felt a swollen lymph node where the cancer was initially diagnosed. It's very tiny, just a little bigger than a grain but this is how it started in the first place and I ignored it for almost 8 years! There is nothing on the other side of the neck and with the holidays I can't get a hold of my oncologist so I was wondering if anyone knows do I have a reason to worry or is this happening because my body is fighting an infection?

It was easier to face the unknown when I was first diagnosed and being pregnant at the time gave me so much hope and courage but this time I know exactly what to expect and I really hope I am just a little paranoid and there is nothing to worry about.

I am going to try and get and appointment with my oncologist as soon as I can but until then I will have to wonder...

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3257
Joined: May 2012

A lymph node the size of a "grain" is smaller than a normal lymph node.

People vary in their reactions to infections, based on degree of exposure and many other factors.  Your sickness compared to the other family members is very likely irrelevant and too subjective to read anything in to.  I was never prone to infection (in fact, never had one) when sick with advanced Stage III HL, and am the least sickness-prone member of my household since recovery, seven years later.

I would calmly wait till I could see a doc if the spot does not disappear and see him whenever, and enjoy the holidays in the mean time.  A tall glass of wine might make you feel like a new person.  If it fails to do so, repeat recommendation,

max

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

It is probably nothing but I would rather be safe than sorry. As I said before, the first time I ignored the sings for many years and I won't allow this to happen again. I also listened to your advise and had a glass of wine for dinner and I'm feeling better for now. 

 

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