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3rd cycle of BEP started, mediastinum lymph nodes haven't reacted at all

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  • #16
    YKSPALLI~ Yes, please update us. glad you can take a deep breath now.
    Son Grant
    dx 12/21/16 at age 17

    BEP x3
    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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    • #17
      My oncologist just called and gave me an all clear! The remaining lymph node was shrunken and now I'm on the surveillance.

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      • #18
        That's fantastic news! Congrats!
        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop! 3/19/18 All clear!

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        • #19
          Another all clear!
          AFP 2
          HCG 3

          I have some constantly worsening surface numbness and deep pain in my feet, it's been downhill since july. That is a weird combination. Especially when getting up from bed or sofa after laying down for some time, it hurts enough that I can't walk properly for a minute or so. Worst part are my heels. Finger numbness and pains have turned for better and I only get stinging pains quite rarely, compared to almost daily in june-july. Also the swelling and restricted movement has gone almost completely, still can't use my wedding ring, but that's ok. My wife can't use her ring because of a small accident with a horse.
          Hair started to grow 2nd week of july and it's like babyhair and has a slight metallic/platinum-like shine. Facial hair was completely white for the first 0.5-1cm and now back to the usual rusty brown.

          I hope everything good for all of you, thank you for your support!

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          • #20
            The BEST news!! Sorry you are experiencing neuropathy. Copngrats on your ALL CLEAR!!!!
            Son Grant
            dx 12/21/16 at age 17

            BEP x3
            Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
            2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
            Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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            • #21
              Love to see the all clears! Hopefully the side effects start going away with time soon!
              3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop! 3/19/18 All clear!

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              • #22
                My feet lagged behind my hands a fair amount, probably 2 months or so. Mine got as bad as the feeling you get when your foot falls asleep and it is waking up. My hands were already getting better by the time my feet started getting their worst. I'm almost 2 years out of chemo now and have pretty much no lingering effects - my neurapathy is probably 95% gone in my feet and hands. It did take 8+ months for it to go away in my feet though.
                6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                7/7/15: bHCG 56, AFP 42, LDH 322
                7/13/15 - 9/18/15: 4xEP
                10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                4/20/16: RPLND @ IU - teratoma only!
                3/29/2018 all clears up to this date!

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                • #23
                  Thanks for sharing. I'm prepared for these symptoms to last some years.

                  I'm extremely happy that the painful tinnitus went away very quickly, I still can't be in loud noise, concerts etc. even with ear protection. That was the worst symptom because I've always protected my hearing and went to concerts a few times a month. Only way to describe that would be ring modulation & distortion effect on large sheets of steel rolling around in a washing maschine. My own speech hurt and rang in my ears, dogs barking was painful.
                  Weird, but we're winning this.
                  Have a good day people!

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                  • #24
                    hi Ykspalli (are you finnish?)


                    I finished chemo in Oct last year after 95% Yolk Sac with a huge lymph node met. I have had back pain and neuro symptoms (fasciculations, one seizure when i did not feel my right hand for 1 hour, feeling of "burning" in my neck) ever since. When it all started I had TERRIBLE night sweats and a few cold chills, tachycardia at 3 AM etc... Now i have constant tinnitus, back pain, and the neuro symptoms are lighter.

                    It sounds we had some common "features".

                    I still dont have a diagnosis and it is freaking me out, doctors say chemo just does not cause this..

                    BUT it seems it is not related to cancer as my AFP today was 4.4 . I just want to drink and celebrate.

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                    • #25
                      by the way... my huge lymph node remained 4*5cm after 4 (!) rounds of chemo. but it was all necrotic when taken out.

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                      • #26
                        Originally posted by sanis View Post
                        hi Ykspalli (are you finnish?)


                        I finished chemo in Oct last year after 95% Yolk Sac with a huge lymph node met. I have had back pain and neuro symptoms (fasciculations, one seizure when i did not feel my right hand for 1 hour, feeling of "burning" in my neck) ever since. When it all started I had TERRIBLE night sweats and a few cold chills, tachycardia at 3 AM etc... Now i have constant tinnitus, back pain, and the neuro symptoms are lighter.

                        It sounds we had some common "features".

                        I still dont have a diagnosis and it is freaking me out, doctors say chemo just does not cause this..

                        BUT it seems it is not related to cancer as my AFP today was 4.4 . I just want to drink and celebrate.
                        Moi!
                        Sorry for the late reply, I've been trying to not think about any cancer related stuff and have been mostly off from this site.

                        Did the fasciculations start after or during the chemo? Because corticosteroids may have a role with those, this is just a shot in the dark after a quick search engine revving. Corticosteroids cause some weird mental reactions, if you are also Finnish read this http://www.ebm-guidelines.com/xmedia/duo/duo95770.pdf
                        I also had some mild heartbeat issues a few times now that you mentioned it. Just a few very strong, deep and fast beats and then gone.

                        I still have painful feet and heels every time I get up and the blood pressure changes in my legs, fingers are almost back to baseline. Hair is thinner, has this "platinumish glow" and starts to curl and I also have these funky owl-like eyebrows growing! I still can't go into any kind of loud noisy environments because of the tinnitus I had during the treatment, starts to hurt and ring in my ears and it lasts for a few days. Also, can't get drunk anymore, I get so nasty hangovers every time. I've decided that I'll just stick with a few sauna beers.

                        Funny that your doc says that, my doc said that "Yeah, chemo may cause some weird reactions" when I had some problems during treatment, can't remember what was the actual reason for the phone conversation that it was mentioned.
                        I hope everything goes better and you'll get rid of those after effects.

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                        • #27
                          Ykspalli,

                          thanks, same wishes for you.

                          I am from Unkari, recognising finnish names not that I understand it.
                          My oncologist told me chemo causes all kinds of weird symptoms but my symptoms were unique, a neurologist thought I could have a paraneoplastic syndrome. Your symptoms are somewhat more typical but maybe worse in a way.

                          The main thing is to beat freakin Cancer.



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