Mets to spleen (in UPSC)?

Flufff
Flufff Member Posts: 67
edited April 2019 in Uterine Cancer #1

 Hi all. 

First post here. 

In September I got diagnosed UPSC stage 4. Spread to distant lymph nodes. 

So, the doctors offered me 3 times chemo taxol/carboplatin. If this helped, they would offer me surgery, and finish of with 3 more chemo. Luckily it did. 

Have finished treatment now. CT Scan showed somethin in my spleen so now I wait for PET scan..

did any of you experience anything like this?

writing this on a crap phone, so will write more when I get a decent phone:)

 

Comments

  • zsazsa1
    zsazsa1 Member Posts: 549 Member
    I had splenomegaly at the

    I had splenomegaly at the time of diagnosis (supposedly FIGO 1a, but isolated tumor cells in one sentinel node, and they only took sentinel nodes), but CT and ultrasound showed no mets.  I still had borderline splenomegaly after 6 rounds chemo.  I'm eventually going to see a hepatologist about it.

  • Flufff
    Flufff Member Posts: 67
    edited April 2019 #3
    zsazsa1 said:

    I had splenomegaly at the

    I had splenomegaly at the time of diagnosis (supposedly FIGO 1a, but isolated tumor cells in one sentinel node, and they only took sentinel nodes), but CT and ultrasound showed no mets.  I still had borderline splenomegaly after 6 rounds chemo.  I'm eventually going to see a hepatologist about it.

    splenomegaly

    To my knowledge, I have a kind of mass/tumor in my spleen. I dont think it was enlarged. Doc said it didn’t look like a cyst. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,113 Member
    Flufff, I can't answer your

    Flufff, I can't answer your specific question, but I did want to welcome you - even though we all wished we never had to meet under these circumstances.  

    It is a great group of women here.  They will share thier knowledge, lend you their shoulder, and let you vent.  

  • zsazsa1
    zsazsa1 Member Posts: 549 Member
    Spleen mets in UPSC are very

    Spleen mets in UPSC are very rare, but there are a few reports of them.

  • derMaus
    derMaus Member Posts: 558 Member
    Typical locations for mets

    Welcome, Fluff!  I can't answer your question but, having mets myself, I've done a lot of research on where it's likely to crop up next (praying hard that it doesn't, though).

    Although there are places where mets are more likely, that doesn't mean it'll be the same for you. We've had members w/mets who successully had spleen removal and liver ablation so I do know those are common sites. Below is a link to the NIH article with the details; you can scroll down to the 'conclusions' section for the short version.    

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613792/

     

  • takingcontrol58
    takingcontrol58 Member Posts: 265 Member
    I had mets on the spleen

    Fluff,

    I was diagnosed with Stage 3b, Grade 3 endometrioid adenocarcinoma in Nov 2014. Two months later,
    I had mets to the liver, spleen, vaginal cuff plus nodules in multiple locations. I had multiple
    mets to the spleen as well as a nodule on the spleen. I know that mets to the spleen are rare.

    All my mets were completely gone by August of 2015, and my spleen mets were some of the
    last to disappear. I did not have any surgery to remove the mets and I still have my spleen, which
    remains healthy.

    My recommendation to you is to get a blood test for ferritin (stored iron).  Iron is stored in the
    liver and spleen (and I had metastases to both these organs). All cells need iron to divide and since cancer cells
    are rapidly dividing, they use up all the excess iron they can find. I had very high ferritin levels when my cancer
    metastasized, and you could have the same issue.

    Ideal ferritin levels are between about 30-60, not what the standard blood test range shows.  Anything over
    100 needs to be addressed. It wasn't until my ferritin level was under 100 that the spleen mets disappeared.
    When the last of the spleen mets disappeared, my ferritin was down to 93, a normal range. It was 334 during
    the height of my metastasis.  I believe my high iron levels were the key reason my cancer metastasized to the spleen,
    along with the liver.

    Besides chemo, 6 infusions of Taxol/Carbo,I also used metformin and was taking many supplements,
    2 of which are known to chelate (remove) iron- curcumin and artemisinin.

    Chemo does not lower high iron levels so I suggest you get a ferritin blood test as as soon as possible
    to at least rule this out as the cause of your spleen mets.

    I've remained in complete remission since Aug 2015.

    Takingcontrol58

     

     

     

     

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited April 2019 #8

    I had mets on the spleen

    Fluff,

    I was diagnosed with Stage 3b, Grade 3 endometrioid adenocarcinoma in Nov 2014. Two months later,
    I had mets to the liver, spleen, vaginal cuff plus nodules in multiple locations. I had multiple
    mets to the spleen as well as a nodule on the spleen. I know that mets to the spleen are rare.

    All my mets were completely gone by August of 2015, and my spleen mets were some of the
    last to disappear. I did not have any surgery to remove the mets and I still have my spleen, which
    remains healthy.

    My recommendation to you is to get a blood test for ferritin (stored iron).  Iron is stored in the
    liver and spleen (and I had metastases to both these organs). All cells need iron to divide and since cancer cells
    are rapidly dividing, they use up all the excess iron they can find. I had very high ferritin levels when my cancer
    metastasized, and you could have the same issue.

    Ideal ferritin levels are between about 30-60, not what the standard blood test range shows.  Anything over
    100 needs to be addressed. It wasn't until my ferritin level was under 100 that the spleen mets disappeared.
    When the last of the spleen mets disappeared, my ferritin was down to 93, a normal range. It was 334 during
    the height of my metastasis.  I believe my high iron levels were the key reason my cancer metastasized to the spleen,
    along with the liver.

    Besides chemo, 6 infusions of Taxol/Carbo,I also used metformin and was taking many supplements,
    2 of which are known to chelate (remove) iron- curcumin and artemisinin.

    Chemo does not lower high iron levels so I suggest you get a ferritin blood test as as soon as possible
    to at least rule this out as the cause of your spleen mets.

    I've remained in complete remission since Aug 2015.

    Takingcontrol58

     

     

     

     

    How was your high ferritin dealt with?

    I have high ferritin (448) and my onc hasn't been particularly worried about it, saying she doesn't consider that level worrisome. I know that high ferritin after blood transfusions is dealt with by phlebotomy. How was your high ferritin dealt with?

  • takingcontrol58
    takingcontrol58 Member Posts: 265 Member
    Lowering my ferritin

    Tamlen,

    I took two supplements which I still use today to keep my iron levels low-curcumin and artemisinin.

    Since my metastases disappeared so quickly, my iron levels quickly dropped in half along with them.
    Ferritin is used as a marker to measure the progress of our treatment. 

    Curcumin is one of the best known anti-cancer supplements. It has been studied
    by the medicial community and is written up in medical journals. It is anti-inflammatory,
    anti-bacterial and anti-cancer and it chelates iron and targets angiogenesis.
    If you use curcumin, you have to use the right formulation because it is not easily absorbed
    by the body.  I use the Thorne Meriva SR brand.

    Artemisinin is known to target both cancer cells and malaria. Cancer cells and malaria are both full of
    iron and this supplement binds to iron and blows up the cells.

    You ferritin is very high- our body does not excrete iron so your other option is
    to donate blood.  You might try this option since your ferritin levels are so high.  People with the hereditary
    disease hemachromatosis (which causes them to absorb iron) have to regularly donate blood. 

    You could also visit a naturopath or integrative doctor and they can give you an IV to
    chelate the iron out of your body.  High levels of iron are very dangerous and more worrisome
    than low levels of iron, yet most doctors don't even test for ferritin.

    The problem with oncologists is that they don't treat the conditions that are causing your cancer.
    To ignore your very high iron level is dangerous and could be feeding your cancer.

    I would suggest you address this as soon as you can.

    Takingcontrol58

     

     

     

  • SF73
    SF73 Member Posts: 317 Member
    I never had this ferritin

    I never had this ferritin test done. But my hemoglobin is about 11 g/dl. It has always been low, even before diagnosis, especially before the surgical menopause. Is there a risk of me having high ferritin while being borderline anemic? Should I try to get this test?

     

  • Tamlen
    Tamlen Member Posts: 343 Member
    SF73 said:

    I never had this ferritin

    I never had this ferritin test done. But my hemoglobin is about 11 g/dl. It has always been low, even before diagnosis, especially before the surgical menopause. Is there a risk of me having high ferritin while being borderline anemic? Should I try to get this test?

     

    High ferritin after transfusion

    My ferritin went up after I had several blood transfusions -- due to hemoglobin that plummeted to a "life-threatening level" -- near the end of chemo. Apparently, this can be a side effect of blood transfusions, which is why my onc was tracking it. If you end up needing a transfusion (hope you don't, of course), then it might be worth making sure your onc is testing your ferritin levels later. Mine showed high for the first time 3 months post-chemo. I asked my onc about the need for phlebotomy to bring the level down, but she wasn't inclined with it in the 400s -- she said she's seen it soar into the 1000s after transfusions and that's the level at which she becomes concerned.

  • takingcontrol58
    takingcontrol58 Member Posts: 265 Member
    SF73 said:

    I never had this ferritin

    I never had this ferritin test done. But my hemoglobin is about 11 g/dl. It has always been low, even before diagnosis, especially before the surgical menopause. Is there a risk of me having high ferritin while being borderline anemic? Should I try to get this test?

     

    Should I test for ferritin?

    SF73,

    Aboslutely. 

    It's not just about hemoglobin.

    Ferritin is stored iron.  Ferritin is a key food for cancer, yet it is never spoken about.
    It should be a part of all standard medical testing, but it is not, and most people don't
    know to ask for it.

    It is obvious that something makes cancer grow in your body, so you have to
    identify the fuels that are driving your cancer. Excess iron could be one of them,
    those it is not the case for everyone.

    Women in menopause have no way to get rid of excess iron (because we no longer
    have monthly periods) so it would be good to test it regularly.

    Takingcontrol58

  • Tamlen
    Tamlen Member Posts: 343 Member

    Lowering my ferritin

    Tamlen,

    I took two supplements which I still use today to keep my iron levels low-curcumin and artemisinin.

    Since my metastases disappeared so quickly, my iron levels quickly dropped in half along with them.
    Ferritin is used as a marker to measure the progress of our treatment. 

    Curcumin is one of the best known anti-cancer supplements. It has been studied
    by the medicial community and is written up in medical journals. It is anti-inflammatory,
    anti-bacterial and anti-cancer and it chelates iron and targets angiogenesis.
    If you use curcumin, you have to use the right formulation because it is not easily absorbed
    by the body.  I use the Thorne Meriva SR brand.

    Artemisinin is known to target both cancer cells and malaria. Cancer cells and malaria are both full of
    iron and this supplement binds to iron and blows up the cells.

    You ferritin is very high- our body does not excrete iron so your other option is
    to donate blood.  You might try this option since your ferritin levels are so high.  People with the hereditary
    disease hemachromatosis (which causes them to absorb iron) have to regularly donate blood. 

    You could also visit a naturopath or integrative doctor and they can give you an IV to
    chelate the iron out of your body.  High levels of iron are very dangerous and more worrisome
    than low levels of iron, yet most doctors don't even test for ferritin.

    The problem with oncologists is that they don't treat the conditions that are causing your cancer.
    To ignore your very high iron level is dangerous and could be feeding your cancer.

    I would suggest you address this as soon as you can.

    Takingcontrol58

     

     

     

    Thanks

    Thanks, takingcontrol58. I took a high quality curcumin supplement before chemo but had to stop taking it during chemo because it's contraindicated with taxol. I think I'll start again, as my onc has no concerns about me taking it again now.

  • SF73
    SF73 Member Posts: 317 Member
    Tamlen said:

    High ferritin after transfusion

    My ferritin went up after I had several blood transfusions -- due to hemoglobin that plummeted to a "life-threatening level" -- near the end of chemo. Apparently, this can be a side effect of blood transfusions, which is why my onc was tracking it. If you end up needing a transfusion (hope you don't, of course), then it might be worth making sure your onc is testing your ferritin levels later. Mine showed high for the first time 3 months post-chemo. I asked my onc about the need for phlebotomy to bring the level down, but she wasn't inclined with it in the 400s -- she said she's seen it soar into the 1000s after transfusions and that's the level at which she becomes concerned.

    If it is caused by

    If it is caused by transfusion I can see why your doctor wouldnt be concerned about it. That sounds like a different use case then your body somehow storing excess iron. 

  • SF73
    SF73 Member Posts: 317 Member

    Should I test for ferritin?

    SF73,

    Aboslutely. 

    It's not just about hemoglobin.

    Ferritin is stored iron.  Ferritin is a key food for cancer, yet it is never spoken about.
    It should be a part of all standard medical testing, but it is not, and most people don't
    know to ask for it.

    It is obvious that something makes cancer grow in your body, so you have to
    identify the fuels that are driving your cancer. Excess iron could be one of them,
    those it is not the case for everyone.

    Women in menopause have no way to get rid of excess iron (because we no longer
    have monthly periods) so it would be good to test it regularly.

    Takingcontrol58

    Thank you, takingcontrol.

    Thank you, takingcontrol. Will add this to the list of blood tests I am interested in getting. I just assumed if there is not enough iron to circulate there probably is not enough iron to store but our bodies work in mysterious ways :) 

  • Flufff
    Flufff Member Posts: 67
    edited April 2019 #16

    I had mets on the spleen

    Fluff,

    I was diagnosed with Stage 3b, Grade 3 endometrioid adenocarcinoma in Nov 2014. Two months later,
    I had mets to the liver, spleen, vaginal cuff plus nodules in multiple locations. I had multiple
    mets to the spleen as well as a nodule on the spleen. I know that mets to the spleen are rare.

    All my mets were completely gone by August of 2015, and my spleen mets were some of the
    last to disappear. I did not have any surgery to remove the mets and I still have my spleen, which
    remains healthy.

    My recommendation to you is to get a blood test for ferritin (stored iron).  Iron is stored in the
    liver and spleen (and I had metastases to both these organs). All cells need iron to divide and since cancer cells
    are rapidly dividing, they use up all the excess iron they can find. I had very high ferritin levels when my cancer
    metastasized, and you could have the same issue.

    Ideal ferritin levels are between about 30-60, not what the standard blood test range shows.  Anything over
    100 needs to be addressed. It wasn't until my ferritin level was under 100 that the spleen mets disappeared.
    When the last of the spleen mets disappeared, my ferritin was down to 93, a normal range. It was 334 during
    the height of my metastasis.  I believe my high iron levels were the key reason my cancer metastasized to the spleen,
    along with the liver.

    Besides chemo, 6 infusions of Taxol/Carbo,I also used metformin and was taking many supplements,
    2 of which are known to chelate (remove) iron- curcumin and artemisinin.

    Chemo does not lower high iron levels so I suggest you get a ferritin blood test as as soon as possible
    to at least rule this out as the cause of your spleen mets.

    I've remained in complete remission since Aug 2015.

    Takingcontrol58

     

     

     

     

    Thank you so much

    Thank you takingcontrol58

    I will check my latest blood work as i am not sure they checked this. I seem to remember having a low iron counts, but not sure. 

    Did you have any symptoms from your mets in the spleen?