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  • Raynaud's phenomenon

    Hey guys so i had my first bout with Raynaud's phenomenon. I was at work holding a cold protien drink and a minite later 2 of my fingers turned white! Freaked me the hell out. I went to the NP and she said its a side effect, she couldnt tell me if RP would stay with me the rest of my life or not. Ive read a little about it, but as anyone had experience with this should i be super worried? Thanks guys

  • #2
    I developed it after chemo in 2014. I don't think it is really something to worry about and is very manageable, though I think it is chronic. I find mittens work better than gloves, and I try to take care in cold temperatures and with cold things (I get it from holding cold drinks, too). Just take care in the cold, mostly.
    9/27/2011 - Mass detected
    10/4/2011 - Left I/O; Seminoma; Stage I
    11-12/8/2011 - Radiation therapy
    2012 - 2013 - Surveillance
    2/6/2014 - bHCG 7.3, then 9.2
    2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
    2/17/2014 - 3xBEP
    5/12/2014 - Tumor completely resolved
    9/12/2014 - New nodule on CT scan
    11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
    12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
    1/16/2015 - Tumor completely resolve!
    3-6/2016 - started having severe and worsening headaches
    6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
    8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

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    • #3
      I had 1 x BEP and I've noticed that my hands react to temperature more now. It's not quite full blown Raynaud's because they don't turn blue or white, but it's a bit like "Pre-Raynaud's" (I made that term up). So I always wear gloves now when I work out with weights, hold hot/cold objects, when out in the cold. It's chronic and caused by the Bleomycin. It doesn't bother me, it's just slightly uncomfortable so I make sure I wear gloves.
      Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

      7/1/2015: felt tiny lump on side of R testicle
      7/30/2015: Ultrasound shows 2 intra-testicular masses.
      7/31/2015: tumor markers normal, CXR clear
      8/5/2015: R orchiectomy
      8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
      8/14/2015: CT abdomen/pelvis clear, Stage 1b
      8/24/2015: started 1 x BEP

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      • #4
        Since my chemo in 2011 I have had Raynauds / nueropathy symptoms in my fingers and toes. Six years on I still have them at the same intensity as always. For me there are certain weather conditions that will bring on "white" fingers - and strangely it isn't always the coldest of weather. Also my previous car had a slight tremor on the steering column and any journey over 45 minutes would set my pinkie off! Thankfully, this just falls into the category of an annoyance - and a reminder of what happened six / seven years ago.

        Take care, DZ

        Jan 2009: RHS (Seminoma) & RT
        Mar 2010: LHS (Embryonal Carcinoma)
        Sep 2010: Relapse & 3 x BEP
        Mar 2015: Five years "nut free"
        http://doublezeroami.blogspot.com

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        • #5
          I was concerned about hot/cold after my chemo (4xEP) but it turned out to be a non-issue. I do a lot of snowmobiling so I was worried that the cold or the vibration would have caused hand issues. I have had 2 winters since and when I'm out there I don't even notice it one bit, thankfully. I initially had a little neurapathy but it has subsided to practically nothing now.
          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!
          9/18/2017 all clears up to this date!

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          • #6
            Ya i figured as much thanks guys

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            • #7
              Hi Scott,
              My son is 3 years out and still has pretty severe Reynaud's in his fingers/toes even with mild cold weather. We live in NC and he gets white fingers with cool weather. It has not improved in 3 years. We went on a cruise 2 weeks ago in the Caribbean. He went to swim with the dolphins. The water was still cool for March. He had a severe flair up of it and really had issues with his limbs while he was in the cool water for an extended period of time. He is very aware of it, tries to be proactive about it, but sometimes you can't control how you feel when you are out there being active trying to live life. He has learned to accept it.
              9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2017.

              Comment


              • #8
                I find my reynauds acts up more in the morning before my circulation is probably running well, cold steering wheel in the morning is biggest activator of it, mittens and gloves help, but if cold I get the white fingers and associated pain through the gloves, but if mid day or late day it hardly ever happens. Making sure my gloves/mits stay in my jacket warm in the house vs. in the car has almost completely eliminated the issue for me. I maintain a home ice rink for my kids in winter so lot of cold hands slinging hose and the Home-boni, but when I am actively moving around it seems to be a non issue, even something like ice fishing and putting bare hands in icewater for period of time does not cause much trouble....but damn that cold steering wheel first thing in morning.

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                • #9
                  Originally posted by RWA View Post
                  I find my reynauds acts up more in the morning before my circulation is probably running well, cold steering wheel in the morning is biggest activator of it, mittens and gloves help, but if cold I get the white fingers and associated pain through the gloves, but if mid day or late day it hardly ever happens. Making sure my gloves/mits stay in my jacket warm in the house vs. in the car has almost completely eliminated the issue for me. I maintain a home ice rink for my kids in winter so lot of cold hands slinging hose and the Home-boni, but when I am actively moving around it seems to be a non issue, even something like ice fishing and putting bare hands in icewater for period of time does not cause much trouble....but damn that cold steering wheel first thing in morning.

                  I also find that the circulation in my hands is worse in the mornings.
                  Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                  7/1/2015: felt tiny lump on side of R testicle
                  7/30/2015: Ultrasound shows 2 intra-testicular masses.
                  7/31/2015: tumor markers normal, CXR clear
                  8/5/2015: R orchiectomy
                  8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                  8/14/2015: CT abdomen/pelvis clear, Stage 1b
                  8/24/2015: started 1 x BEP

                  Comment


                  • #10
                    Ya the mornings i can feel stiff. I do work aith my hands all day for the last 18 years im sure its a little arthritis to

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