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Afraid I may have relapsed!!

SamB's picture
SamB
Posts: 9
Joined: Dec 2008

Hi everyone,
I was declared in remission over 6 months ago from Hodgkin's Lymphoma stage two. I had a tumor in my chest as well as a swollen lymph node. I did two rounds of chemo and 2 weeks of radiation. I was doing GREAT after treatment finished and was so excited. Now about 21/2 weeks ago I started to feel extremely tired and was having hot flashes, swelling and some soreness around my left breast, and arm pit as well as some weight loss. Now it has been getting progressively worst, and I am very nervous. I now have pain, weakness, and tingling in my left arm and hand as well. I have lost 7 lbs in 3 weeks without trying. I just had a CAT scan done a couple of days ago, but haven't gotten any results back yet. But I had one back in August that looked great. I am so worried and frustrated that this seems to be happening again. Things were really looking up, and now my life is on hold again as I feel to sick to really do much. Has anyone had a similar experience? Any advice would be greatly appreciated!! :)

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi SamB,
I have not experienced a relapse yet, but have been told by my Onc that eventually I will. I have Follicular NHL-stage3-typeA-grade2. I completed 6 rounds of CVP-R a year ago Dec 14th and am currently doing a 2 year maint plan of Rituxan, every other month. I'm so sorry you are having to go through all of the fear and anxiety that comes with new symptoms popping up. I'm glad you got a CT scan and will find out for sure what is going on. I won't tell you to not worry, because thats impossible right now, but I will keep you in my prayers and be here for you when needed. Come back and let us know what you find out. Hang in there. Love...Sue

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Hi SamB,

Sue pretty much covered things. I know this is scary and frustrating.
We're here to support you so please keep us updated.

Warm hugs and positive thoughts,

Jim

SamB's picture
SamB
Posts: 9
Joined: Dec 2008

Thank you for the support. I just heard from the Dr's office and the CAT scan was normal. Which I feel is good and bad. Good because my chest looks normal, bad because I still have all of these symptoms, and I am really frustrated at how bad I am feeling, and how my life has had to stop because of it. I asked them to do a PET scan just incase. I am someone who is very in tune with my body, and it makes me nervous that I was doing so well and now out of the blue all of this is happening. I am worried that I could have something going on in a different area of my body now. Not sure if that is even possible, but I would rather be safe than sorry.

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

Hi SamB,
I think getting a PET scan might be helpful if for no other reason than to relieve your mind. Hopefully your doctor will agree and your insurance will allow it. Let us know what you decide and remember we are here if you just need to talk until you get to the bottom of this. We know our bodies better than anyone, so keeping on top of things is very important. Don't let up until you get some answers. Best wishes...Sue (FNHL-2-3A-6/10)

SamB's picture
SamB
Posts: 9
Joined: Dec 2008

Thank you Sue,
I am definetly going to have a PET scan done, because as you say it will at least relieve my mind. One of the biggest lessons I learned from my experience is what you said we know our bodies better than anyone. I went for three years of being sick, and fighting with Dr's before they finally got to the bottom of it the first time. I knew I was sick, but the Dr's kept saying it was all in my head. Towards the end of the three years I had started to think they were right, and almost gave up right before they found it.
The thing that makes me nervous is I was doing so well. I am a working student at a horse farm, and I clean stalls, and do a lot of heavy lifting and hard strenuous work as well as ride my horse often. I was doing great, and keeping up with everything for 6 months and then out of the blue I started feeling bad again. It actually started with fatigue and I realized one day when I was riding my horse that I was having a hard time because my left leg was weak. Anyways I have decided that I would rather over react than under react, and be as thorough as possible. This is my life after all, and I don't want to mess around with it!! Again thank you for your support and kind words :)

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Sam B

First, welcome to a super group of supportive friends.

I have to agree with Sue about getting a PET Scan. Do you have a supportive doc who can order it for you. My PCP is really good at ordering what ever I ask for. Well, almost everything. I too have had to push long and hard for docs to believe that there is something wrong. I know myself and I listen to my inner voice. I have never let myself down. So, if your inner voice is telling you that something is off, please keep pushing till you have an answer you are satisified with. Hopefully it turns out to be something minor, and not cancer.

I'll keep the positive thoughts for you.

Lisha

BTW I love your picture, including the "mini" horse. My dog's best friend was Great Dane. Sadly he passed not to long back. My girl is a Newfoundland..

SamB's picture
SamB
Posts: 9
Joined: Dec 2008

Thank you Lisha, I am very happy that I found this group!! I spoke with my Dr. last night and he is going to do a PET scan, but he wasn't thrilled about doing it and was very short with me which I found very uncompassionate. I am really upset with him as I thought he understood my fears, and would be willing to be thorough.

Like you said I know my own body and need to listen to my inner voice. I am very aware of the fact that I could just be freaking out over how I am feeling, and that it could be nothing, but I would rather be safe than sorry.

Thank you for your support. And thank you for your comment on my picture. That is Buddy he is deaf, and a big doofus.lol

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Sam,
Its your body. Just a suggestion...Find another Onc!!!! The one you have is not listening to you about what you know. It will only get worse later.You don't need that crap in a situation like this. John

po18guy
Posts: 237
Joined: Nov 2011

It did mine. My first onc, a generalist, thought I had a virus and wanted to wait. We had been warned by the biopsy surgeon to run for our lives if we heard the word "wait". That advice, and the second opinion, saved me. Wife sent me to SCCA/Fred Hutchinson, where they correctly diagnosed and treated me. Good thing, as there wasn't much time. Even though, PET scans are not conclusive, are pricy and give you more radiation. They look for hyper metabolism, an indicator of the cell cloning process, but it also can be the sign of an injury healing. CTs look for masses, and I receive a series every two months. My onc does not think much of radiologists or their opinions. Either way, a SO is the way to go.

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

SamB,

Continue to advocate for yourself! I was in remission for almost a year when, I got that feeling. I had a PET scan scheduled in about 2 weeks and as such, I did not contact my oncologist. Following the PET, the tech asked me if I had any dental issues in my lower right jaw. In fact, I did not but I had been experiencing numbness in that area as well as some pelvic pain and pressure. I was not suprised when my oncologist informed me that my lymphoma was back.

If you feel off, you must get your oncologist's attention. Please do get a second opinion if you do not feel that your doctor is giving you the time and attention that you deserve. You need to know why you're feeling this way, if it is or isn't cancer that's causing you to feel off.

Good luck,
Kellie

SamB's picture
SamB
Posts: 9
Joined: Dec 2008

Thank you for sharing your story with me Kellie. This oncologist is actually my second one. I had a great Dr. while undergoing treatment, but then moved to a different area, and started with a new oncologist as I was 3 hours away from my parents.

I am since back with my paretns for the time being until I figure out what is going on, and I am planning on calling and speaking with the head nurse at my former oncologist's office tomorrow. I want to see if there is anyway I can have him as well as this other Dr. as I agree a second opinion is a very good idea.

Just wondering if anyone else ever had a problem with pain, weakness, and tingling in any of their extremities after radiation, and chemo?? I NEVER once had any problem with it during treatment, but all of a sudden my left foot is swollen, and sore with tingling as well as my entire left leg, my left hand, and arm. I know that changes happen to our bodies for a long time after treatment ends. Is this something anyone else has experienced?

Thank you all again for answering my questions, and being so supporitve!! It is great to have such wonderful support :)

toledotom's picture
toledotom
Posts: 9
Joined: Nov 2011

Yes, I too felt extremely good during treatment for almost 6 months during my 8 sessions of R-Chop regiment. The chemo gets into your larger muscles and it takes awhile to show up in your body muscles which you are feeling now. I used to be very active at 56, I am too experiencing tingling in my legs arms and hands daily. My fatigue level is almost nill. I was a College Umpire and high school Referee in very good shape and could run! Not today! I am not able to willing walk up and down stairs without feeling exhausted. Any kind of strenuous activity I am sleeping 12 to 15 hours next day. It is very depressing, give it some time and keep an eye on your weight and any Night sweats. They are the best sign something is really wrong going on. Also, your white blood count will be elevated. Good Luck and keep the positive attitude. Things will get better.

SamB's picture
SamB
Posts: 9
Joined: Dec 2008

So I saw my other oncologist, and he was wonderful!! I'm so glad I went to him. We are going to do a PET scan on Tuesday. As for the weakness on my left side he is concerned that it may be neurological as he said it is to far out to be radiation related, and while it is possible for it to be a cancer sympton it is very unlikely.

We will see what the PET scan shows on Tuesday, and then go from there. I'm really glad that he actually listened to me, and is going to figure this out! I can't wait to get feeling better. :)

allmost60's picture
allmost60
Posts: 3155
Joined: Jul 2010

"YEAH"...be sure to share your PET scan results. Maybe you will have happy news before Christmas that ALL is well...(thats what I'll be praying for). Love...Sue
(FNHL-2-3A-6/10) age 61

po18guy
Posts: 237
Joined: Nov 2011

Some symptoms may recur even without active cancer, since your immune system was likely compromised when you first contracted it. For some reason, fever, night sweats and other symptoms can appear form time to time for no apparent reason. After almost two years in remission, I woke up with night sweats - on my left forearm. Go figure! As to relapse, after 16 rounds over four months involving eight different drugs, I immediately relapsed. Yeah, it was not a good feeling, but a clinical trial providentially appeared and my cancer hated it. Still does. I have been in constant treatment now since August 2008 and probably will be from now on. That's just the price of life. But, I am here to tell you that it is survivable.

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