Announcement

Announcement Module
Collapse
No announcement yet.

Our Journey

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    Almost done with round 2

    I have not posted lately so I thought I would post a quick update. Cory is getting ready for his last Bleo Tuesday of round 2. Almost half way done..Fatigue, nausea, and what looks like the beginning of a mouth sore are his current side effects. But overall, as well as can be expected..He shaved his head about 3 weeks ago and I am already used to it..I actually kind of like it So at the end of cycle 1 his hcg was at 176, which was totally exciting, so I thought that since he has had a full week and a bleo tuesday since then that I would have him take a pregnancy test..I know, I know, not very reliable but I couldn't resist..It came out negative, so I am convinced that his hcg is less than 50..Guess I will have to wait until tomorrow.. (BTW, my husband officially thinks I'm crazy now)
    Last edited by Chaps6; 04-17-12, 12:59 AM.
    _____________________
    Debrah,

    Husband (Cory) age 31..
    2/22/12-Consultation for vasectomy. Told to get blood work/ultrasound. Cancer suspected.
    2/24/12- Dx, B-hcg=9670, LDH=250
    2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
    3/12/12- 4XBEP-Start of Round 1( HCG-8100)
    4/2/12 Round 2 (HCG 176)
    4/23/12 Round 3 (HCG 13)
    5/14/12 Round 4 (HCG 6)
    6/1/12 Breathing Complications
    7/19/12Passed Away Bleo Toxicity

    Comment


    • #17
      Originally posted by Chaps6 View Post
      ... have him take a pregnancy test..I know, I know, not very reliable but I couldn't resist..It came out negative... (BTW, my husband officially thinks I'm crazy now)
      Not crazy - creative!!!

      Glad to hear that it is mostly going well, that s/e are still manageable and that hCG is (apparently) plummeting. All great news Debrah!
      Tracy
      Cancer pharmacologist, caregiver blog here

      Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
      Left I/O 12/31/10.
      4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
      1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
      Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
      Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

      Comment


      • #18
        Round 3-day 2

        Today is day 2 of round 3. Over the last week or so we have noticed that he just hasn't "bounced back" after treatments the way he did before, so he is definitely starting to feel the full effects. WBC is pretty low and I'm not sure why he's not getting nuepogen. I'm kinda frustrated by it. We have 4 kids and I work in the schools so he is exposed to everything possible (sigh).. Last week we thought that he was developing a mouth sore but he wasn't, so we are thankful for that. He still does not have a port and isn't really regretting the decision but did say he is tired of being poked. just 6 more weeks right!?!

        Now the exciting news.. HCG came back from the end of cycle 2 and it was down to 13!!!!! Woohoo!!
        _____________________
        Debrah,

        Husband (Cory) age 31..
        2/22/12-Consultation for vasectomy. Told to get blood work/ultrasound. Cancer suspected.
        2/24/12- Dx, B-hcg=9670, LDH=250
        2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
        3/12/12- 4XBEP-Start of Round 1( HCG-8100)
        4/2/12 Round 2 (HCG 176)
        4/23/12 Round 3 (HCG 13)
        5/14/12 Round 4 (HCG 6)
        6/1/12 Breathing Complications
        7/19/12Passed Away Bleo Toxicity

        Comment


        • #19
          Hi Debrah,

          You hang in there!!

          The chemo, blasted poison that it is, is doing the job! A little over
          halfway through the treatment and the HCG has gone from 8100
          down to 13!! I haven't done the math, but it seems to be ahead of
          the expected weekly half life drop.

          Four boys and a husband! You're in line for Sainthood, I'm sure!

          I was so worried about my son and germs when he went through chemo because
          he had a toddler and an infant. My dtr in law kept Lysol wipes and liquid
          hand sanitizer in every room of the house and I think my son used one of the
          bathrooms exclusively, but honestly, I don't remember if that was for him
          or the rest of them.

          No surprise that Cory hasn't bounced back like he did after the first round.
          The third and fourth rounds will be tough, but he will get through them. Just keep
          him hydrated, make sure he takes his meds and let him eat whatever appeals
          to him. Any kind of calories is better than none. Even a can of Ensure will
          get some nutrition in him. And don't be afraid to tell the chemo nurses and
          his oncologist about anything that seems out of the norm.

          You're doing a great job as a caregiver! It will be done before you know it
          and he will be back to himself. When he gets there, make sure you
          take a break for yourself!

          And by the way, my son was also scheduled for a vasectomy prior to his diagnosis.
          He had an RPLND and two rounds of chemo and still needed the
          vasectomy. Keep that on the back burner!!

          Diane

          Comment


          • #20
            Excellent news on the HCG- the chemo is killing that cancer. And while the third and fourth rounds might be rough, there is light at the end of the tunnel - a cancer-free light.

            Hang in there. We're here for you!
            Heidi

            Husband - age 51
            10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
            11/1/10 4X BEP
            12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
            2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
            6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
            Surveillance since 6/11

            Comment


            • #21
              Debrah, you have four kids, a job, and are taking care of your husband....you are a rockstar! I feel like I am spread thin just from working full-time, taking care of my boyfriend, and keeping his family informed via email. I think you are my hero.

              I totally agree with celebrating every little victory. That's what keep's me going! Hopefully your husband feeds off your positive energy.

              Lots of prayers for you both!
              loving girlfriend to 39 year old cancer survivor


              march 2010 R/T stage 1A seminoma
              surveillance
              march 2012 recurrence, right inguinal lymph node 3cm
              stage 2B seminoma
              april 2012 BEPx3
              august 2012 cancer free

              Comment


              • #22
                Round 3-Day 7

                So this is the weekend following the full week of cycle 3, and nausea is at an all time high.He was taking zofran, which seemed to do the trick before, but is now ineffective. We called the doc and he recommended double the dosage, and maybe taking up to 3 at one time if necessary. Cory did it immediately and it did nothing. So we called doc back, he called in dexamethasone (sp?) and Ativan.Those seemed to do the trick well enough. Hopefully today he will have a better day. It is so hard to see him feeling so cruddy. He is staying very well hydrated and I believe that it has helped keep other side effects from surfacing..Just this darn nausea..But he is in his 3rd cycle and I guess it's to be expected...p.s.(We have a wonderful doctor. Taking all his own calls, even on the weekends, even while he's at a conference, even while he's dancing with his wife, now that's dedication).


                So now that we are a little more than half way through, my focus is starting to shift to RPLND. I know it's not for certain yet, but he had teratoma in the primary, so it's looking that way. My question(s) to all you way more knowledgeable people is this. 1.) Can the RPLND and a surgery for the neck lymph node be done at the same time? Or is it a separate procedure? I do realize the difference anatomically, but wasn't sure if it's something that can be done while he is under anesthesia and eliminating another procedure..2.) We are in California and are wondering if any of you know of, or had personal experience of a specialist in California? I have found a few, one in San Francisco and one in the LA area. I am all for going wherever needed, even if it's outside of California, (ex. Indiana) but I figured I would start my search local. Our Urologist and Oncologist have both said they have one they would highly recommend in California, but we would cross that bridge when we get there. But my mind doesn't let me wait for that bridge...So I turn to you guys..
                Last edited by Chaps6; 04-29-12, 11:23 PM.
                _____________________
                Debrah,

                Husband (Cory) age 31..
                2/22/12-Consultation for vasectomy. Told to get blood work/ultrasound. Cancer suspected.
                2/24/12- Dx, B-hcg=9670, LDH=250
                2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
                3/12/12- 4XBEP-Start of Round 1( HCG-8100)
                4/2/12 Round 2 (HCG 176)
                4/23/12 Round 3 (HCG 13)
                5/14/12 Round 4 (HCG 6)
                6/1/12 Breathing Complications
                7/19/12Passed Away Bleo Toxicity

                Comment


                • #23
                  Ugh, It's so hard seeing Cory feel so cruddy. I hate that every little thing that happens to him we are looking it up to see if it's something to be concerned about!! Like tonight, his temp was low so we were concerned..It's passed and now it's back to normal, but geesh..I'm 31, and I'm convinced I'm going to be gray by the end of this 4xBEP!!
                  _____________________
                  Debrah,

                  Husband (Cory) age 31..
                  2/22/12-Consultation for vasectomy. Told to get blood work/ultrasound. Cancer suspected.
                  2/24/12- Dx, B-hcg=9670, LDH=250
                  2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
                  3/12/12- 4XBEP-Start of Round 1( HCG-8100)
                  4/2/12 Round 2 (HCG 176)
                  4/23/12 Round 3 (HCG 13)
                  5/14/12 Round 4 (HCG 6)
                  6/1/12 Breathing Complications
                  7/19/12Passed Away Bleo Toxicity

                  Comment


                  • #24
                    So sorry to hear Debrah!

                    The BEP roller coaster is not fun, some suffer more than others, and there seem to be a number of members/caregivers seeing bad reactions!

                    How low did Cory's temp go?
                    Tracy
                    Cancer pharmacologist, caregiver blog here

                    Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
                    Left I/O 12/31/10.
                    4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
                    1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
                    Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
                    Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

                    Comment


                    • #25
                      @tracy It was 96.5.. Not sure if that's considered too low. I did not find too much on having a low temp.. He just feels cruddy. Not too many side effects excepts nausea and fatigue, but they are in over drive right now!! Do you happen to know of any specialist for RPLND in California?
                      _____________________
                      Debrah,

                      Husband (Cory) age 31..
                      2/22/12-Consultation for vasectomy. Told to get blood work/ultrasound. Cancer suspected.
                      2/24/12- Dx, B-hcg=9670, LDH=250
                      2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
                      3/12/12- 4XBEP-Start of Round 1( HCG-8100)
                      4/2/12 Round 2 (HCG 176)
                      4/23/12 Round 3 (HCG 13)
                      5/14/12 Round 4 (HCG 6)
                      6/1/12 Breathing Complications
                      7/19/12Passed Away Bleo Toxicity

                      Comment


                      • #26
                        Originally posted by Chaps6 View Post
                        Do you happen to know of any specialist for RPLND in California?
                        I don't, but I only know the big ones (NYC, Indy, and Nichols in the upper NW). Where in Cali are you - SoCal? or North?
                        Tracy
                        Cancer pharmacologist, caregiver blog here

                        Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
                        Left I/O 12/31/10.
                        4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
                        1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
                        Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
                        Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

                        Comment


                        • #27
                          Hi Tracy -

                          I think Nichols is an oncologist and not a surgeon?
                          Heidi

                          Husband - age 51
                          10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; -HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
                          11/1/10 4X BEP
                          12/7/10 End Cycle 2 - -HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
                          2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
                          6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
                          Surveillance since 6/11

                          Comment


                          • #28
                            Originally posted by hbr777 View Post
                            I think Nichols is an oncologist and not a surgeon?
                            Heidi, you are right, but he should know of experts in the area, I think.
                            Tracy
                            Cancer pharmacologist, caregiver blog here

                            Wife to Kel, dx 12/30/11 Stage IIIc (poor) embyronal, AFP 13700, 10x11 cm retroperitoneal mass, 1 cm^2 lung met
                            Left I/O 12/31/10.
                            4xBEP 1-4/11, AFP=22, 5*7 RP mass, tx failed
                            1.5 x VeIP 5-6/11; tx failed, AFP/b-hCG rising
                            Salvage RPLND @Indy 6/29/11, metastatic mixed germ cell tumor with yolk sac, seminoma and teratoma
                            Remission! AFP steady since 9/2011; 2+ years ALL CLEAR

                            Comment


                            • #29
                              We are in the central valley Close to Fresno. But would travel anywhere. I did find Nichols on the TCRC website. He is based in Seattle. There's a carrol that shows up On that website as well and he's located in San Francisco.. I don't care where we have to go. I just thought I would start local. I'm not sure if the neck lymph node is going to be a special thing. I do not find much on it. Only listed for staging purposes
                              _____________________
                              Debrah,

                              Husband (Cory) age 31..
                              2/22/12-Consultation for vasectomy. Told to get blood work/ultrasound. Cancer suspected.
                              2/24/12- Dx, B-hcg=9670, LDH=250
                              2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
                              3/12/12- 4XBEP-Start of Round 1( HCG-8100)
                              4/2/12 Round 2 (HCG 176)
                              4/23/12 Round 3 (HCG 13)
                              5/14/12 Round 4 (HCG 6)
                              6/1/12 Breathing Complications
                              7/19/12Passed Away Bleo Toxicity

                              Comment


                              • #30
                                Doctors

                                Deborah,

                                I'm in Los Angeles and on this site one of the top two docs for TC here in Los Angeles at USC seems to specialize in the RPLND surgery. Here is a link to the top doc list and if you click on the USC docs name it will show you his bio and specialities. http://tcrc.acor.org/experts.html#la Best of luck to you!

                                Rob

                                Comment

                                Working...
                                X