Update Dr stoped treatment
May 9 Diagnoised with Stage 4 Colon Cancer with Mets to the liver and 12 out of 12
lymph positive.
May 18 CEA 87.7
May 21 Colon Resection
May 24 Pulmonary Embolism moved to ICU
June 10 Folfox #1 CEA 248.8
June 24 Folfox #2
July 5 Iron Treatments
July 11 Folfox #3
July 27 Folfox #4 CEA 508
Pet Scan showed growth and diagnoised with Lupus and AVN (Necrosis of the shoulder from lack of blood flow.
Aug 12 Folfiri #1
Aug 26 Folfiri #2
Sept 9 Folfiri #3
Sept 13 Admited ICU for Pulmonary Embolism
Sept 15 Vena Cava Filter Placed
Sept 18 Pnuemonia
Sept 23 Folfiri #4 CEA 587.6
Oct 7 Folfiri #5 CEA 631.9
Oct 19 Dr stoped all treatments and refered him to Sarah Cannon Cancer Center for trials.
Michael is 42 years old, we have 4 children ages 6 to 24 and it is all so confusing, in the last weeks I have watched him get stronger and feel better because he is not getting chemo. At the same time I know the longer he goes without treatment the cancer is uncontrolled. He still has faith and is in good spirits and I have no idea how but I try to support him. I know the kids dont understand as they see him getting beter and stronger. We leave for Nashville November 1st to go over the trial they want to put him on.
Jessica
Comments
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You and your family have
You and your family have certainly been through the wringer since May. My husband was diagnosed four days after yours. I remember your posts from earlier mainly because of the four children some still young. I hope the clinical trial is your answer. You guys deserve good news. I will pray for your family. Lisa0 -
Lisabuckeye2 said:You and your family have
You and your family have certainly been through the wringer since May. My husband was diagnosed four days after yours. I remember your posts from earlier mainly because of the four children some still young. I hope the clinical trial is your answer. You guys deserve good news. I will pray for your family. Lisa
I hope your husband is doing well with his treatment.0 -
Jessica
I see you are up in the middle of the night as I often am. It is so very sad to see so many younger friends on this board. I'm sorry that none of Michael's chemo seemed to be slowing the beast down. I hope this new team in Nashville will be able to get things under control. A new team may just be able to turn things around. I know that Buzzard sees a team at Vandy there. My daughter, Johnnybegood, was also young when diagnosed in 2008 and she is still fighting valiantly. She sees a team in Louisville who are also very good.
I know that everything is in a turmoil right now, but as many others have said, just Breathe and know that things will get better. You will be in my thoughts as so many others here are.
Luv,
Wolfen0 -
Wolfenwolfen said:Jessica
I see you are up in the middle of the night as I often am. It is so very sad to see so many younger friends on this board. I'm sorry that none of Michael's chemo seemed to be slowing the beast down. I hope this new team in Nashville will be able to get things under control. A new team may just be able to turn things around. I know that Buzzard sees a team at Vandy there. My daughter, Johnnybegood, was also young when diagnosed in 2008 and she is still fighting valiantly. She sees a team in Louisville who are also very good.
I know that everything is in a turmoil right now, but as many others have said, just Breathe and know that things will get better. You will be in my thoughts as so many others here are.
Luv,
Wolfen
I hope Nashville has some answers, he was being seen by Louisville Oncology and they said there was nothing else they could do with the medications they have available. I was almost relieved they didn't try the third line as I have heard the side effects are horrible. We are also checking into Vanderbuilt as well.
Jessica0 -
oppswolfen said:Jessica
I see you are up in the middle of the night as I often am. It is so very sad to see so many younger friends on this board. I'm sorry that none of Michael's chemo seemed to be slowing the beast down. I hope this new team in Nashville will be able to get things under control. A new team may just be able to turn things around. I know that Buzzard sees a team at Vandy there. My daughter, Johnnybegood, was also young when diagnosed in 2008 and she is still fighting valiantly. She sees a team in Louisville who are also very good.
I know that everything is in a turmoil right now, but as many others have said, just Breathe and know that things will get better. You will be in my thoughts as so many others here are.
Luv,
Wolfen
opps0 -
trial = hope
Hi Jessica,
I am so sorry to hear you've had such a tough time since your husband's dx... My mum has gone through a similar path with treatments, Folfiri first, stopped working after 9 rounds, then Folfox/Avastin, stopped working after 4 rounds, CEA up, liver enzymes through the roof last scan showed that the largest tumour on the liver is now 10cms...
She is on vectibix, but I want to explore trial options too. Typically with very advanced disease, doctors are never optimistic about trials, and there are risks too, but I feel that for us it is something to hang on to, as opposed to just waiting for the inevitable...
My heart goes out to you and your children. I know how hard it is, and it 'only' my mum, who is 66... You know what I mean. I really hope you find a promising trial and your husband responds greatly to it. There is still a chance!
Hang in there, keep hoping
Liz0 -
Praying
for the right treatment to help your husband. Can't imagine the stress the two of you are experiencing right now. Hope you have a lot of support to help with all that you are dealing with. Please keep in touch. The people on here are a wonderful support group for everyone and have wonderful advice from the many years of combined experience.0 -
goodluck with the trial
dear jessica,
i would ask for the benefits of the trial?
love your husband as passionately as possible, he is facing a challenging prognosis.
i really valued my wifes love,care and concern while i was treated.
hugs,
pete0 -
Jessica -
I dread reading a story like yours; what your spouse is going through, and
how terribly the chemicals are effecting him. Whenever I do, I can't help but
wonder why the use of an alternative isn't explored and tried.
There are many of us here that have used other than "chemo" and
radiation in our attempt to stay alive.
Some of us stuck around to tell others about what we've used,
to try to give some hope and encouragement regarding "alternatives".
Others have given up trying to share their experiences with those
that are convinced that chemicals and radiation are the only way
to go, and simply moved on.... (the insults to those of us that
have used an alternative, are a bit much)
There -are- other very viable ways to fight cancer; ways that
-do not- make one so sick that the basic spirit to remain alive
is driven from the body and soul.
You do not need to get worse to get better; there -are- other ways.
My best hopes and wishes to you both,
John0 -
Jessica,emtwoods said:Wolfen
I hope Nashville has some answers, he was being seen by Louisville Oncology and they said there was nothing else they could do with the medications they have available. I was almost relieved they didn't try the third line as I have heard the side effects are horrible. We are also checking into Vanderbuilt as well.
Jessica
You say:
" "I was almost relieved they didn't try the third line as I have heard the side effects are horrible."
What third line are you referring to? Erbitux? Avastin?
If it is one of those, several of us here find those side effects to be quite tolerable, certainly much more so than Irinotecan or Oxaliplatin.0 -
Insults? Really?John23 said:Jessica -
I dread reading a story like yours; what your spouse is going through, and
how terribly the chemicals are effecting him. Whenever I do, I can't help but
wonder why the use of an alternative isn't explored and tried.
There are many of us here that have used other than "chemo" and
radiation in our attempt to stay alive.
Some of us stuck around to tell others about what we've used,
to try to give some hope and encouragement regarding "alternatives".
Others have given up trying to share their experiences with those
that are convinced that chemicals and radiation are the only way
to go, and simply moved on.... (the insults to those of us that
have used an alternative, are a bit much)
There -are- other very viable ways to fight cancer; ways that
-do not- make one so sick that the basic spirit to remain alive
is driven from the body and soul.
You do not need to get worse to get better; there -are- other ways.
My best hopes and wishes to you both,
John
"(the insults to those of us that have used an alternative, are a bit much)"
Care to share a link?0 -
Side EffectsBuckwirth said:Jessica,
You say:
" "I was almost relieved they didn't try the third line as I have heard the side effects are horrible."
What third line are you referring to? Erbitux? Avastin?
If it is one of those, several of us here find those side effects to be quite tolerable, certainly much more so than Irinotecan or Oxaliplatin.
He has been on avastin the whole time unless his B/P is too high, I was refering to the Erbitux. He saw another oncologist at the VA today to review his records and he said he agrees with the first dr since the Folfox and Folfiri did not work at all to even slow down the progression he feels tring the 3rd line would only make him inelligiable for a lot of trial drugs. Most like you to have only tried 2 regiments.
Jessica0 -
Alternative and NEW RESULTSJohn23 said:Jessica -
I dread reading a story like yours; what your spouse is going through, and
how terribly the chemicals are effecting him. Whenever I do, I can't help but
wonder why the use of an alternative isn't explored and tried.
There are many of us here that have used other than "chemo" and
radiation in our attempt to stay alive.
Some of us stuck around to tell others about what we've used,
to try to give some hope and encouragement regarding "alternatives".
Others have given up trying to share their experiences with those
that are convinced that chemicals and radiation are the only way
to go, and simply moved on.... (the insults to those of us that
have used an alternative, are a bit much)
There -are- other very viable ways to fight cancer; ways that
-do not- make one so sick that the basic spirit to remain alive
is driven from the body and soul.
You do not need to get worse to get better; there -are- other ways.
My best hopes and wishes to you both,
John
My husband has been really cautious about using alternatives I think for my benefit. 9 years ago my Mother was diagnoised with Stage 4 Uterine Cancer she had been healthy all her life and was very much into holistic medicines. She tried chemo for one round and then decided she wasn't doing it anymore and went strictly to alternative medicines. I burried my Mom at 55 years old and thought for years she had just given up. I understand more and maybe now in her shoes I would do the same but I know that's why my husband avoids the alternative methods.
Now, todays Doctor's visit may have changed my mind a little. Michael went to the Oncologist at the VA to review his records before going to Nashville. Michael has had no treatments since October 7th and his CEA was 631.9. Today they retested and it came back at 366????????? The only thing Michael has taken was Milk Thistle which I tried from reading results others on this site have had, and yesterday he started 1 tsp of baking soada in water. Not sure what that does but figured it couldn't hurt someone said the alkiline in the body gets too high and allows the cancer to grow faster. Michaels Alkaline was very high. I am coutiously optimisitc about todays result and will wait and hear wht the Doctor at Sarah Cannon has to say on Tuesday.
Jessica0 -
Your in my prayers
I hope the trails will really help. This is such a terrible journey but we have to keep fighting. I wish the best and keep us updated.
Jeff0 -
Jessica -emtwoods said:Alternative and NEW RESULTS
My husband has been really cautious about using alternatives I think for my benefit. 9 years ago my Mother was diagnoised with Stage 4 Uterine Cancer she had been healthy all her life and was very much into holistic medicines. She tried chemo for one round and then decided she wasn't doing it anymore and went strictly to alternative medicines. I burried my Mom at 55 years old and thought for years she had just given up. I understand more and maybe now in her shoes I would do the same but I know that's why my husband avoids the alternative methods.
Now, todays Doctor's visit may have changed my mind a little. Michael went to the Oncologist at the VA to review his records before going to Nashville. Michael has had no treatments since October 7th and his CEA was 631.9. Today they retested and it came back at 366????????? The only thing Michael has taken was Milk Thistle which I tried from reading results others on this site have had, and yesterday he started 1 tsp of baking soada in water. Not sure what that does but figured it couldn't hurt someone said the alkiline in the body gets too high and allows the cancer to grow faster. Michaels Alkaline was very high. I am coutiously optimisitc about todays result and will wait and hear wht the Doctor at Sarah Cannon has to say on Tuesday.
Jessica
As far as the CEA levels, you should be aware that the CEA will
often rise when large numbers of cancer cells die. That fact is all
too often overlooked by many in the field, and can be a serious
problem if the patient is taken off the chemicals due to the rise!
Or more simply: the rise in CEA can be a result of the chemicals
working, rather than "not working". (There is much written on
the subject)
And.... as far as "alternatives"? It's like anything else in life, Jess...
What works for one, may not do much for another..
I am only personally aware of the merits of Traditional Chinese
Medicine (TCM), and have used imported medicinal strength
Chinese herbs exclusively in my own fight against this PITA.
You can poke around at my "profile page" (blog section),
for an idea of what can be (or might be) accomplished with
herbal broths. The herbs are not of the "local store" type, so
if you're thinking "milk thistle", or "apricot seeds", this isn't it.
If your spouse can't find relief with conventional meds, and
the toxic chemicals, he just might want to look into what else is
available. TCM has been around for nearly four thousand years,
and used by billions upon billions of humans; it remains being
used to this very day, and is included in many Asian hospitals
with or without western medicine. It's often used as an adjunct
to chemical therapy, to thwart the side effects. In fact, many
major treatment centers are now offering TCM as part of
the therapy.
It's worth the time to learn about it; what is there to lose?
I wish you both the very best of health!
John0 -
Jessica
D@mn it, were basically my first thought at reading your update.
It sucks, but, it's good that there is a trial. What stage is the trial?
I know with our cancer, it's hard for people to understand when we feel under the weather, or even are sick from the chemo, because we look so good. And now with your husband being off of the chemo, he's going to look better and be stronger and it's so much harder to understand that the cancer is really in there, working hard against his body.
So I'm going to do the best I can for the both of you, which really is the only thing I can do, and that is to get on bended knee and ask that the trial is successful.
I will be thinking of your family on the 1st.
Winter Marie0
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