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First the good news...

It is Friday! Okay, I am unemployed and for me every day is a Friday. At least it might as well be I usually don't know what day of he week it is unless someone tells me. But I had my appointment at MSKCC yesterday and that was Thursday, so using a bit of deductive reasoning with the only assumption being I did not sleep more than 24 hours, I threw my hat confidently in the ring for today being Friday.

Now the bad news...

My massive sacral tumor is just that - massive. Two doctor's now have stated it was inoperable and while chemo might be attempted, at best the result might buy me a slight reduction in tumor size and thereby allow me slightly more time without an increase in pain. But even that has little hope of achieving that goal. My case goes before the board at MSKCC Monday night, but I am not expecting anything promising. Without a surgical option and little chance of measurable success through chemo treatments, my care plan right at this moment will be pain management and treating symptoms.

So far Dilaudid has managed my pain reasonably well. Symptom care will be determined as needed. In the near term will probably be a permanent ileostomy and urostomy since the tumor is already massive and affecting those functions. Then it depends how the cancer progresses. Involvement of the liver and lungs later is probable and chemo night be a good response depending how everything else is progressing. Who knows how this disease might progress and what the involvements might be.

I have come to this place happy with the care I have been given so far and content that I made the best decisions I could with the information I had at hand. That being said I will very likely die from this disease and only time will tell when. We still have trials to look into and possibly a third opinion, but I don't have much hope for either of those at his point in time. Initial inquiries into trials has not been promising and it is highly doubtful that a third opinion will yield a different diagnosis, the tuner has just become too large - maybe I can apply for my own zip code - it is that big. Thank you for listening...it means a lot.

Okay, talking of dying reminds me of a joke. It goes like this: I want to die peacefully and quietly in my sleep like my grandfather, not screaming and yelling like all the people on his bus!

Comments

  • John23
    John23 Member Posts: 2,122
    RickMurtagh -

    You might want to read this: Hydrazine Sulfate

    Should I reach a point of no return, and time becomes primary importance,
    I will try the two bottles I had bought ($30 ea) some time ago.

    The above link will take you to the center that has tested this item.
    They sell nothing, and are a non-profit; they may or may not be
    able to suggest a supplier.

    When we feel western medicine is failing us we should move on,
    and look more seriously at the alternatives, instead of confining
    ourselves to only what's available in the "mainstream arena".

    You owe it to yourself to live.

    Best wishes and hopes for you,

    John
  • jjaj133
    jjaj133 Member Posts: 867
    Hi Rick, I am new to this
    Hi Rick, I am new to this forum, so you don't know me. I am facing my 3rd reoccurance.
    I just wanted to tell you how sorry I am that your news was not better.
    You and yours will be in my prayers.
    I loved the joke, I think we have the same sense of humor. It helps us get through the tough times.
    God Bless,
    Judy
  • SisterSledge
    SisterSledge Member Posts: 332
    Time to think outside the box
    As John brings up, at this point it may be time to investigate alternative treatments and give them a chance at whacking your cancer. I wish the best for you!
  • AnneCan
    AnneCan Member Posts: 3,673
    I am sorry Rick
    I hoped you would have better news than that. I am not sure if you remember RobinVan or not; he had a sacral tumour as well + was treated for awhile but then received surgery over 2 days to have it removed. I have not seen an update from him for awhile, but last I heard he was in rehab. His surgery was done in Vancouver, British Columbia. It might be a good idea to connect with him to find out what you can. Again I am so sorry you didn't get better news.
  • AnneCan
    AnneCan Member Posts: 3,673
    Just checked out blog
    Rick,

    I just checked out Rob's blog + it looks like he is doing really well.
  • Lovekitties
    Lovekitties Member Posts: 3,364
    Dear Rick
    I am so sorry that the news was not better, but will be hoping and praying that the board has some good news for you.

    I agree with Anne, check with Robin Van...if you look back on some posts by him/about him I think you will find his web site and can get more details.

    Keeping hopeful thoughts for you,

    Marie who loves kitties
  • angelsbaby
    angelsbaby Member Posts: 1,165

    Dear Rick
    I am so sorry that the news was not better, but will be hoping and praying that the board has some good news for you.

    I agree with Anne, check with Robin Van...if you look back on some posts by him/about him I think you will find his web site and can get more details.

    Keeping hopeful thoughts for you,

    Marie who loves kitties

    Awww Rick
    I am sorry about the news, i am sending good vibes your way

    michelle
  • Awww Rick
    I am sorry about the news, i am sending good vibes your way

    michelle

    This comment has been removed by the Moderator
  • Crow71
    Crow71 Member Posts: 679
    Hey Rick
    You're breaking my heart buddy, but I love the humor as always.

    I think your tumor and my tumors should get together and have party.

    I know how it feels to wonder which way the tumor is growing and to hope that it will lay off of you long enough to try something else that might have a benefit. I'm doing a phase 1 trial at Duke right now. The drug is also being administered at U of Michigan and one other NE school that I can't remember right now. Let me know if you are interested in hearing more about it. I'm happy to share my experience so far. (That goes for everybody.) You've been through so much Rick. **** **** man.

    I've been thinking about the logistics of our tumors having a party, and I'm not so sure it's a good idea after all.

    Take care Rick. I can't remember where you are from, but if you are visiting NYC, have a good time.

    Roger
  • geotina
    geotina Member Posts: 2,111
    Rick:
    I think you have already read Rob's blog a few weeks ago. Hopefully, it helped with your decision making and knowledge.

    I just don't get this disease, it jumped to bone bypassing liver, I'm so very sorry.

    Hugs - Tina
  • herdizziness
    herdizziness Member Posts: 3,624
    Dear Rick
    Just wanted to remind you of me for a minute. The cancer board in Santa Cruz turned me down, Stanford's tumor board originally wouldn't look at me. No chance, blah, blah, blah.
    Just got back from Stanford a few minutes ago, after the surgeries I wasn't going to get, after the chemo that wouldn't do the trick, I'm expected to live a nice long life according to the surgeons today. Just don't think it's all lost, it isn't that I believe.
    Take care Rick, I'll be thinking of you, and hoping for the best.
    Winter Marie
  • pepebcn
    pepebcn Member Posts: 6,331

    Dear Rick
    Just wanted to remind you of me for a minute. The cancer board in Santa Cruz turned me down, Stanford's tumor board originally wouldn't look at me. No chance, blah, blah, blah.
    Just got back from Stanford a few minutes ago, after the surgeries I wasn't going to get, after the chemo that wouldn't do the trick, I'm expected to live a nice long life according to the surgeons today. Just don't think it's all lost, it isn't that I believe.
    Take care Rick, I'll be thinking of you, and hoping for the best.
    Winter Marie

    Rick I still think chemo can turn the things to better !
    There are so many here me among others! ,first time I was on chemo got a liver tumor of 10 cm, and maybe a dozen smaller at liver as well,
    no one gave a dime for me , after 6 months of chemo 80 % shrinkage and got a successful surgery ! and it was a trial!.
    Don't loose your faith in chemo !
    Hugs dear mate!
    Praying for you!
  • RickMurtagh
    RickMurtagh Member Posts: 586
    Crow71 said:

    Hey Rick
    You're breaking my heart buddy, but I love the humor as always.

    I think your tumor and my tumors should get together and have party.

    I know how it feels to wonder which way the tumor is growing and to hope that it will lay off of you long enough to try something else that might have a benefit. I'm doing a phase 1 trial at Duke right now. The drug is also being administered at U of Michigan and one other NE school that I can't remember right now. Let me know if you are interested in hearing more about it. I'm happy to share my experience so far. (That goes for everybody.) You've been through so much Rick. **** **** man.

    I've been thinking about the logistics of our tumors having a party, and I'm not so sure it's a good idea after all.

    Take care Rick. I can't remember where you are from, but if you are visiting NYC, have a good time.

    Roger

    Humor
    Humor keeps me sane, especially in these insane times.

    My "tream" is looking into trials and those of blood relation looking to help prolong my life or cure me are doing their part in coming up with alternatives. So far I think I am going to pass on eating 9 volt batteries for some much needed energy, but almost everything else is still on the table. Anything you can provide to enlighten me (us) as to your trial at Duke might be of benefit.

    As for the tumor party idea, I am going to call a pass on that. On my limited experience so far multiple tumors getting together has always turned out to be a bad idea.

    I live in NJ. MSKCC is less than 40 minutes away, unless it is rush hour - then it could take weeks to get there.
  • RickMurtagh
    RickMurtagh Member Posts: 586

    Dear Rick
    Just wanted to remind you of me for a minute. The cancer board in Santa Cruz turned me down, Stanford's tumor board originally wouldn't look at me. No chance, blah, blah, blah.
    Just got back from Stanford a few minutes ago, after the surgeries I wasn't going to get, after the chemo that wouldn't do the trick, I'm expected to live a nice long life according to the surgeons today. Just don't think it's all lost, it isn't that I believe.
    Take care Rick, I'll be thinking of you, and hoping for the best.
    Winter Marie

    I love to hear those kinds of stories
    I love to hear those kinds of stories. They do give me some hope, but I must confess, "mainstream medical" as John likes to put it, has weighed in heavily against and while I might pursue something else they might offer, I think my time would be better spent weighing my alternates right now. Perhaps I should call them my alternative alternatives.

    I have not given up hope, but to be honest, I have given up hope on the normal protocols for my cancer. They basically call for me to wait to die and take a few pain pills along the way. I think I can do something more than that. Just not sure what yet. Thanks for the encouragement.
  • RickMurtagh
    RickMurtagh Member Posts: 586
    John23 said:

    RickMurtagh -

    You might want to read this: Hydrazine Sulfate

    Should I reach a point of no return, and time becomes primary importance,
    I will try the two bottles I had bought ($30 ea) some time ago.

    The above link will take you to the center that has tested this item.
    They sell nothing, and are a non-profit; they may or may not be
    able to suggest a supplier.

    When we feel western medicine is failing us we should move on,
    and look more seriously at the alternatives, instead of confining
    ourselves to only what's available in the "mainstream arena".

    You owe it to yourself to live.

    Best wishes and hopes for you,

    John

    Thanks
    Thanks for the info John. As always your posts provide the possibility of hope. I am looking into "alternatives" since the surgical option seems to be out of the question and the oncological options limited to palliative care.
  • RickMurtagh
    RickMurtagh Member Posts: 586
    AnneCan said:

    I am sorry Rick
    I hoped you would have better news than that. I am not sure if you remember RobinVan or not; he had a sacral tumour as well + was treated for awhile but then received surgery over 2 days to have it removed. I have not seen an update from him for awhile, but last I heard he was in rehab. His surgery was done in Vancouver, British Columbia. It might be a good idea to connect with him to find out what you can. Again I am so sorry you didn't get better news.

    RobinVan
    I had read his posts here and followed hid blog. He does seem to be doing well for where he is on his cancer journey and recovering in rehab. Earlier he was able to walk his daughter down the isle and recently enjoyed the birth of a new grandchild. He is proof that life can be rewarding even amidst life threatening cancer. Thanks for the thought. I will try and connect with Rob after the board convenes and I have as much info as I am likely to given my particular circumstances.
  • pepebcn
    pepebcn Member Posts: 6,331

    I love to hear those kinds of stories
    I love to hear those kinds of stories. They do give me some hope, but I must confess, "mainstream medical" as John likes to put it, has weighed in heavily against and while I might pursue something else they might offer, I think my time would be better spent weighing my alternates right now. Perhaps I should call them my alternative alternatives.

    I have not given up hope, but to be honest, I have given up hope on the normal protocols for my cancer. They basically call for me to wait to die and take a few pain pills along the way. I think I can do something more than that. Just not sure what yet. Thanks for the encouragement.

    I've seen you not been in folfiri + monoclonal antibodies yet?
    isn't? They make wonders on me!
  • RickMurtagh
    RickMurtagh Member Posts: 586
    pepebcn said:

    I've seen you not been in folfiri + monoclonal antibodies yet?
    isn't? They make wonders on me!

    The full board
    The full board, including the oncologists have not weighed in yet, so there may still be some possibilities. Because of the advanced stage of the tumor and it's size, it is just doubtful they can provide anything meaningful, hoping for a cure. I have to wait on their final word and hen decide if I will look for a third opinion.
  • Buckwirth
    Buckwirth Member Posts: 1,258
    pepebcn said:

    I've seen you not been in folfiri + monoclonal antibodies yet?
    isn't? They make wonders on me!

    I'm with Pepe here
    Though you may be in the 'rong kras for those. (weak, I know, but I had to try)

    Trials could be a good thing though. Lots of new stuff being tested, and some of it shows great promise.

    Whatever you decide, keep the sense of humor. Even a bad joke is worth the effort.

    Blake
  • pepebcn
    pepebcn Member Posts: 6,331
    Buckwirth said:

    I'm with Pepe here
    Though you may be in the 'rong kras for those. (weak, I know, but I had to try)

    Trials could be a good thing though. Lots of new stuff being tested, and some of it shows great promise.

    Whatever you decide, keep the sense of humor. Even a bad joke is worth the effort.

    Blake

    I agree Blake but not only trials! Avastin, erbitux and others
    are excellent MCAB! worth it to try ,not only worth it but the standard procedure in those cases!
    Rick I think there you got a huge chance man! otherwise ask for some other opinions!.
    Hugs!
  • goofytc
    goofytc Member Posts: 8
    Hope in chemo
    While chemo side effects are no fun, it is well worth it. I had a huge tumor, that didn't seem to be shrinking. Wasn't looking good at all after 4 weeks of chemo. Then I started my rounds of 5 F U, and 2 weeks later I had NO TUMOR!! It was gone. I am going to have stubborn faith and believe chemo will work for you! You have an amazing attitude and I have much love and respect for you! A bond brought on by cancer is one not easily broken! I am here - if for nothing else but an ear- I am here. Wishing the best for you and believing the best can happen!! Hang in there and keep us posted.
    Tina
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252

    RobinVan
    I had read his posts here and followed hid blog. He does seem to be doing well for where he is on his cancer journey and recovering in rehab. Earlier he was able to walk his daughter down the isle and recently enjoyed the birth of a new grandchild. He is proof that life can be rewarding even amidst life threatening cancer. Thanks for the thought. I will try and connect with Rob after the board convenes and I have as much info as I am likely to given my particular circumstances.

    Rob in Van and another family friend
    I now know of two people that have had successful surgery removing the sacrum due to large tumors mostly considered inoperable. So maybe it is something for you to consider also? It is a tough surgery with a hard recovery, but it can be done.
  • tootsie1
    tootsie1 Member Posts: 5,036
    AnneCan said:

    I am sorry Rick
    I hoped you would have better news than that. I am not sure if you remember RobinVan or not; he had a sacral tumour as well + was treated for awhile but then received surgery over 2 days to have it removed. I have not seen an update from him for awhile, but last I heard he was in rehab. His surgery was done in Vancouver, British Columbia. It might be a good idea to connect with him to find out what you can. Again I am so sorry you didn't get better news.

    Rob
    Rob posted on facebook the other day that he is home!

    *hugs*
    Gail
  • tootsie1
    tootsie1 Member Posts: 5,036
    Praying for you
    Rick,

    I'm really sorry to read this. In your picture you look so sturdy and healthy! I'm praying that an answer will be revealed very soon! There must be something that can improve your situation.

    *hugs*
    Gail
  • RickMurtagh
    RickMurtagh Member Posts: 586
    tootsie1 said:

    Praying for you
    Rick,

    I'm really sorry to read this. In your picture you look so sturdy and healthy! I'm praying that an answer will be revealed very soon! There must be something that can improve your situation.

    *hugs*
    Gail

    Remarkably, I am much unchanged from that picture. It was taken in August of last year during my son's wedding and other than being 20 pounds lighter and the new tumor, I am pretty much the same. New symptoms keep cropping up regularly and old ones relating to my colectomy have come back to keep me company. I just don't know what my life would even be like without the doctor's visits, pills and Depends. I do not know if I would know what to do with myself.

    Thank you Gail, Tina, Blake and all then others who have posted here to encourage me. It really helps. In fact I am trying to get my wife to join the board because I know what our little community has to offer and it would be a shame if she did not take advantage of it.

    Okay, I have another joke:
    A gallant captain takes his ship and crew through pirate infested waters. On the first day they encounter a pirate ship and before engaging the pirates then captain calls out, "Bring me my red vest!". The captain and crew repel the pirates and sends them down to Davey Jones Locker. A few days later the ship, captain and crew encounter pirates again. This time there are four pirate ships! Again the captain calls out, "Bring me my red vest!". The captain again dawns red vest and leads his crew to victory against the dread pirates, sending them also into the deep.

    The curious crew asked the captain, "Why do you call for your red vest every time we encounter pirates?". The captain responded, "I call for my red vest so that if I get wounded in battle my wounds will not show, lest you become discouraged.". The crew was greatly encouraged by the leadership and thoughtfulness of their brave captain.

    The next day they again encountered pirates, except this time there where ten pirate ships! The captain rallies his crew, calls them to arms and calls out, "Bring me my brown pants!"
  • amylouisa
    amylouisa Member Posts: 3
    My brother's tumor sounds
    My brother's tumor sounds like yours and they told him they couldn't help him at University of Michigan. We went to Mayo and they will be operating May 18th with 50% chance of cure. Have you checked Mayo? His involves the prostate, bladder, and sacrum.
  • amylouisa
    amylouisa Member Posts: 3
    My brother's tumor sounds
    My brother's tumor sounds like yours and they told him they couldn't help him at University of Michigan. We went to Mayo and they will be operating May 18th with 50% chance of cure. Have you checked Mayo? His involves the prostate, bladder, and sacrum.
  • SisterSledge
    SisterSledge Member Posts: 332

    Remarkably, I am much unchanged from that picture. It was taken in August of last year during my son's wedding and other than being 20 pounds lighter and the new tumor, I am pretty much the same. New symptoms keep cropping up regularly and old ones relating to my colectomy have come back to keep me company. I just don't know what my life would even be like without the doctor's visits, pills and Depends. I do not know if I would know what to do with myself.

    Thank you Gail, Tina, Blake and all then others who have posted here to encourage me. It really helps. In fact I am trying to get my wife to join the board because I know what our little community has to offer and it would be a shame if she did not take advantage of it.

    Okay, I have another joke:
    A gallant captain takes his ship and crew through pirate infested waters. On the first day they encounter a pirate ship and before engaging the pirates then captain calls out, "Bring me my red vest!". The captain and crew repel the pirates and sends them down to Davey Jones Locker. A few days later the ship, captain and crew encounter pirates again. This time there are four pirate ships! Again the captain calls out, "Bring me my red vest!". The captain again dawns red vest and leads his crew to victory against the dread pirates, sending them also into the deep.

    The curious crew asked the captain, "Why do you call for your red vest every time we encounter pirates?". The captain responded, "I call for my red vest so that if I get wounded in battle my wounds will not show, lest you become discouraged.". The crew was greatly encouraged by the leadership and thoughtfulness of their brave captain.

    The next day they again encountered pirates, except this time there where ten pirate ships! The captain rallies his crew, calls them to arms and calls out, "Bring me my brown pants!"

    Thanks for the smiles
    Thanks bunches Rick, your jokes have helped me smile even when it's not a good day. ~hugs~
    Janine
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    sorry about the bad news
    rick,

    i just hope you find some treatment options that give you real hope.
    i love the jokes and humour is essential tool of a cancer survivor.

    hugs,
    pete
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Rick
    Rick,
    I'll be thinking about you on Monday when your case goes before the board at MSKCC. I hope and pray they come up with some options for you.
    Thank you for sharing your humor with us. Keep it coming.

    Aloha,
    Kathleen