Questions for doctor

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  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #22
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    Daddisgrl said:

    HPV
    Hi Tony; whats "funny" is that I had just had an HPV test at the GYN right before my hub was diagnosed. I just had another today. The only option that I know of is women getting tested for HPV during their yearly GYN appointment. Some insurance companies won't pay for testing every year. There is no test for men.

    There is a Gardasil vaccine for teens & young adults but it only "protects" against 4 strains & they don't know how long the vaccine will last & if it will even help. What they also do not tell you is that you may end up with one of the side effects. Young; healthy teens are now bedridden from it. Since my daughter already has body ache/muscle problems; she will not be getting it.

    There may be something better in the next few years; so we're waiting.

    Exactly
    You have found pretty much what I have found and stated above as well.

    The bad part is not knowing when or how you might have been infected. But like I and others mentioned, it could have been decades ago (man I'm geting old).

    Most of the time your body fights off these things, sometimes not.

    JG
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #23
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    Questions updated
    I just updated it.
  • Goalie
    Goalie Member Posts: 184
    #24
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    Daddisgrl said:

    Questions updated
    I just updated it.

    HPV and males
    Note that while we males may not be able to be tested, our tumors certainly can be. That's how I know mine was Sweet 16. (Someone smarter than I am certainly knows HOW they do this. Like so much else relevant to this, I just accept that it works.)

    Great job. I will pass this along to my coordinating nurses, etc. next time I see them if you don't mind. Doug
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #25
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    Goalie said:

    HPV and males
    Note that while we males may not be able to be tested, our tumors certainly can be. That's how I know mine was Sweet 16. (Someone smarter than I am certainly knows HOW they do this. Like so much else relevant to this, I just accept that it works.)

    Great job. I will pass this along to my coordinating nurses, etc. next time I see them if you don't mind. Doug

    Biopsy
    They can test infected tissues such as your biopsy from a tumor, lymphnode, tonsil tissue, etc...just no test for the blood or over all body.

    Same with women, but they test the tissue samples that are taken during routine annual gynecological exams.

    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #26
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    Additional Comment ~ Blood Chemistry & Hematology Reports
    Not neccessarily something to bring uo to the MD's, but of personal note....

    Each time before chemo and various other times inbetween, I'd have a Blood Chemistry & Hematology Report done.

    This served as a roadmap as to whether I was able to have chemo that day, and anything else going on, infections, etc....

    I highly recommend asking for a hardcopy for your own records. For me they haved served as a very good indicator of any changes, a base from when I started completely through completion and back to post readings.

    I started with the base and everything being within normal ranges (January 2009 - March 2010) before all blood work came back normal. I have the most recent which was about two weeks ago.

    Now of course showing the TSH and Free T4, TSH has been wacked out for around 18 months...indicating Thyroid damage from the radiation.

    Anyways, thought it good to mention..sometimes we don't think of these things in the heat of battle...

    Best,
    John
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #27
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    Skiffin16 said:

    Additional Comment ~ Blood Chemistry & Hematology Reports
    Not neccessarily something to bring uo to the MD's, but of personal note....

    Each time before chemo and various other times inbetween, I'd have a Blood Chemistry & Hematology Report done.

    This served as a roadmap as to whether I was able to have chemo that day, and anything else going on, infections, etc....

    I highly recommend asking for a hardcopy for your own records. For me they haved served as a very good indicator of any changes, a base from when I started completely through completion and back to post readings.

    I started with the base and everything being within normal ranges (January 2009 - March 2010) before all blood work came back normal. I have the most recent which was about two weeks ago.

    Now of course showing the TSH and Free T4, TSH has been wacked out for around 18 months...indicating Thyroid damage from the radiation.

    Anyways, thought it good to mention..sometimes we don't think of these things in the heat of battle...

    Best,
    John

    John; I've wanted to do a
    John; I've wanted to do a tips post. A guy from another forum & I were discussing it; we just haven't gotten that far. Might be a good topic to get going.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #28
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    Daddisgrl said:

    John; I've wanted to do a
    John; I've wanted to do a tips post. A guy from another forum & I were discussing it; we just haven't gotten that far. Might be a good topic to get going.

    Sounds Good
    Either Dawn (Sweetblood) can help if needed, her Superthread is pretty awesome...

    JG
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #29
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    Skiffin16 said:

    Sounds Good
    Either Dawn (Sweetblood) can help if needed, her Superthread is pretty awesome...

    JG

    I was planning on adding
    I was planning on adding this to the superthread, daddisgirl. Hope that's ok.
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #30
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    sweetblood22 said:

    I was planning on adding
    I was planning on adding this to the superthread, daddisgirl. Hope that's ok.

    Thats fine- didn't know
    Thats fine- didn't know there was a super thread lol
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #31
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    sweetblood22 said:

    I was planning on adding
    I was planning on adding this to the superthread, daddisgirl. Hope that's ok.

    LOL - Sorry Dawn
    I meant to say above either you or myself, somehow it just came out you.... :)
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #32
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    Skiffin16 said:

    LOL - Sorry Dawn
    I meant to say above either you or myself, somehow it just came out you.... :)

    Gah! *coughsputterspit*
    That's fine John. Lol. I'm more upset that she didn't know about the Superthread!

    Can't be helpful if people don't know it's there.


    :D
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #33
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    sweetblood22 said:

    Gah! *coughsputterspit*
    That's fine John. Lol. I'm more upset that she didn't know about the Superthread!

    Can't be helpful if people don't know it's there.


    :D

    I didn't come here for
    I didn't come here for information. I originally came here to answer a post that was sent to me from another board. I try to scan topics where someone is looking for help once a day but haven't done more then that. Too bad they can't sticky your super post.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #34
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    Goalie said:

    Slight editing
    I think that, in the spirit of Skiffin and in light of our recent discussions on another thread I would suggest that 26

    26. What type of Dr do we need to care for the feeding tube?

    be more like:

    26. Will I need a feeding tube and what type of Dr do we need to care for it?

    Beyond that, I think this is a terrific effort and only wish that we had had these nine months ago. I think that something very much like this should be handed out in the very fist meeting with the docs. I say this not because I think the docs or the hospital is hiding anything. My docs (and nurses) were wonderful and answered every question we had openly and truthfully and I trust(ed) them absolutely. But more and more complete information sooner is definitely to the patient's benefit.

    Doug

    I had also-
    thought of editing #26, Doug. But a bit differently. You didn't have a PEG. No Dr. cares for the PEG, Doug. A Surgeon installs it, then the patient is handed-over the a Home Healthcare place, where a technician explains the ropes, and sets-up the supplies. In all honesty, I was negatively surprised that no Dr really dealt with the PEG, other than to put it in and later take it out. Nobody at my Onco office even seemed to know much about them, actually.

    So, my edit would be:
    Will I need or benefit by getting a feeding tube, and who will show me how to care for it and get me the feeding supplies I will use?

    kcass
  • staceya
    staceya Member Posts: 720
    #35
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    Daddisgrl said:

    staceya
    staceya; what I usually do is come to ACS site; look up the cancer; then on the right side is a doctor question link

    I'm not sure if this is the correct cancer for your friend but here is the link
    http://www.cancer.org/Cancer/UterineSarcoma/DetailedGuide/uterine-sarcoma-talking-with-doctor

    I will also go to the National Cancer Institute's site as well as any cancer specific sites to see if I can find more things to ask.

    My son has an uncle who is a cancer drug rep; he gave me excellent questions when my dad was fighting cancer; so when my hub was diagnosed; I knew I had to be prepared & I knew I needed to find the best place within reason.

    There's a really good article here
    http://tinyurl.com/NewsweekCancer it's really long but explains why you need to find a good place to go to.

    Thanks--Will do!!

    Thanks--Will do!!
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #36
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    Kent Cass said:

    I had also-
    thought of editing #26, Doug. But a bit differently. You didn't have a PEG. No Dr. cares for the PEG, Doug. A Surgeon installs it, then the patient is handed-over the a Home Healthcare place, where a technician explains the ropes, and sets-up the supplies. In all honesty, I was negatively surprised that no Dr really dealt with the PEG, other than to put it in and later take it out. Nobody at my Onco office even seemed to know much about them, actually.

    So, my edit would be:
    Will I need or benefit by getting a feeding tube, and who will show me how to care for it and get me the feeding supplies I will use?

    kcass

    From our experience; we
    From our experience; we should have gotten a gastro to put the feeding tube in. The one we ended up seeing was wonderful & I feel that had they originally been the one dealing with it; our experience would have been better & I don't feel he would have had as many infections as he did. The general surgeon was the pits- he was one of those high & mighty surgeons- I see 500 of them a year & it's not infected. His nurse told us it looked black & like it needed changing & a culture cause it had been almost 6 months & he disagreed & refused to even culture it.
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #37
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    Bumping so I can easily link
    Bumping so I can easily link to give a friend.

    Sweetblood- you can copy the questions straight to your new super post if you'd like. I clicked the link you have in it to find the post but it didn't link to the top.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #38
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    sweetblood22 said:

    Gah! *coughsputterspit*
    That's fine John. Lol. I'm more upset that she didn't know about the Superthread!

    Can't be helpful if people don't know it's there.


    :D

    Superthread...

    SUPERTHREAD
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #39
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    Daddisgrl said:

    Bumping so I can easily link
    Bumping so I can easily link to give a friend.

    Sweetblood- you can copy the questions straight to your new super post if you'd like. I clicked the link you have in it to find the post but it didn't link to the top.

    SuperThread
    The link changes periodically as Dawn updates it...

    Here is the new thread;

    SUPERTHREAD

    Dawn also usually bumbs it once or so each week to bring it to the top also, Sunday's I believe.

    John
  • Spec4Sully
    Spec4Sully Member Posts: 1
    #40
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    swelling in throat

    I wish i had asked these questions when my wife first went to the ENT. Well Radiation done on 4/13,   3 Biopsy's later Trach inserted 1/24/14 Shiley#4. Was told would be temporary but now she has swelling, no cancer....the cure destroyed her throat. Did anyone here ever have the swelling for a long period of time? We are new to this site and i am very confused as to what can be done. Any other surgery to open throat. She had the lump on her voicebox i forgot to mention.

     

  • KTeacher
    KTeacher Member Posts: 1,103
    #41
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    Spec4Sully said:

    swelling in throat

    I wish i had asked these questions when my wife first went to the ENT. Well Radiation done on 4/13,   3 Biopsy's later Trach inserted 1/24/14 Shiley#4. Was told would be temporary but now she has swelling, no cancer....the cure destroyed her throat. Did anyone here ever have the swelling for a long period of time? We are new to this site and i am very confused as to what can be done. Any other surgery to open throat. She had the lump on her voicebox i forgot to mention.

     

    Welcome

    You might want to start a new post, you added on to an old post and some might not look.  I am sure that you will get more response that way.  Thank you for being a proactive caregiver.

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