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Decision time- thoughts welcomed

steved
Posts: 835
Joined: Apr 2004

I don't often post about myself but have been hanging out awaiting a surgical opinion that is finally in today and I now face decision I would welcome people's thoughts on.

I am a 39 year old diagnosed with rectal cancer in 2004- treated traditionally with chemoradiotherapy and surgery. Was 7 years clear until November 2010 and have since been diagnosed with a recurrence in the pelvis. It sits on the right side at the sciatic notch through which passses the sciatic nerve. This is causing pain and progressive weakness in that leg. I have been re-irradiated (EB radiotherapy not cyberknife as it would fry the nerve and tumour is too big) and been back on chemo for over a year- now on avastin and xeloda cycles every two weeks. These are helping but the cancer is very slowly progressing. I have no signs of spread elsewhere on multiple PETs/ MRIs etc.

I have had a range of surgical opinions mainly for a pelvic exenteration (a clearance of all the pelvic organs and cancer which is the main surgical treatment for this). However, it is clear that would not be likely to be curative as it can't clear the cancer without destroying the nerves and blood vessels to the leg. I was then told there was no surgical option and moved into the palliative care process with a projected life span of a couple of years.

Following this the surgeons rediscussed the case (informally at a conference they were all at- typical bloody docs!) and recommended an opinion from a Danish group who have published the only series of patients who have hemipelvectomies for this. Ultimately their opinion is that it is worth doing.

The surgery is removal of ther bladder with a permanent urostomy (urine bag) and permanent colostomy as they remove everything they can find the pelvis. They also remove the side of the pelvic bone and amputate the leg. I would be left with two bags and one leg. I may be able to have a prosthesis but not definitely. They cannot say how likely it is to clear the cancer as only eight have been done in the published series and no one has done it in the UK. The Mayo has done some but never studied/ published outcomes.

My dilemma is how much of a gamble does one take in search of a cure. The surgeons feel there is a 'good chance' of it achieving an R0 resection (removing all the tumour with clear margins- potentially curative) but can't be more exact. My biggest fear is that I will do it and lose a significant part of quality of life and still have the cancer at the end. However, I have two young children, 5 and 8, who I am desparate to see grow up, and feel I have been offered a chance. There are no other potentially curative options- without it my cancer will progress, it will render my leg useless anyway and it will kill me.

I am scared and uncertain.

steve

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

I tend to notice and follow the post-ers who have young children as I too am a parent.............
Really don't have anything of value to add to your heartbreaking question but I wanted to reach out to you.
Here is a cyber hug~~~
Maybe someone who reads this will have a 3rd medical option for you.
Tommycat

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maglets
Posts: 2589
Joined: Jun 2006

darling darling doc: thank you so much for sharing with us .....for trusting us enough to post this huge news. You are right Steve.....you rarely talk about yourself. Here am I yammering on as if I have something to say...but like Tommy I just want to reach out to you and hold you.

Steve I am a great great believer in surgery....it has worked for me when nothing else would. It would seem to me the Danish offer is one that is definitely worth thinking about....by the way....congrats on their saying yes... Of course you are scared....this is one dirty big decision...life changing and potentially life changing for the good!

and whilst I have you on the phone....may I express my deepest thanks and humble respect for all that you are adding to this forum. Your quiet good sense and understanding shines through....I thank you for that Doctor Steve...

with deepest love...
mags

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

What does one say to a post like this? It's so hard, you are so brave.
I think when one has children that you want to see them grow up and you have a good chance to be there and watch them and guide them during their growing years, I would say then you only have the one option.
I would hope that you could have an opportunity to talk with a few men or women (who have young children) that are coming home from Iraq or Afghanistan that have been involved in IED explosions, those are the ones that can best tell you how they are coping with loss of limbs and other bodily functions. They can talk to you about how their lives have changed, they would be so much closer to your situation then I could even try to fathom. I think you will find most end up having the philosophy that they want to be living to be with their family, even though it means accepting a new way of coping with their lives. But I cannot speak for them, nor imagine what they have gone through, or what you will be going through, I just want to put out that there are people that are actually experiencing what you may be going through and you can find out best how to cope and live life to the fullest with the surgeries in order to be there for your children.
My thoughts and prayers are with you,
Winter Marie

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Sundanceh
Posts: 4408
Joined: Jun 2009

That was a jaw dropping post...it hurt to read through it...all the while I was trying to put myself in your place and feel what you must be feeling.

I have failed....

I'm feeling alot of apprehension and fear in myself from reading this - so I can only begin to imagine the thoughts of what you must be going through - trying to weigh it all out about what you think is the best course for you.

From what I can draw, it appears to me that you have found your own solution - or at least the way that you want to lean towards in your last paragraph.

The decision seems to come down to:

1. Do nothing and as you said, progression will continue and your leg will become inert.

2. Take the gamble because the doctors at least feel that there "is a chance."

With your kids on the line, I'm sure you are leaning towards #2 here. There is a chance and as sobering as this news is, it does represent that.

If the worst were to come to pass, you would have empowered yourself to take the steps outlined to you by your doctors - and take the 'chance.' Perhaps, the lone consolation would be that you would at least extend more time by choosing this route.

With all of the options ruled out - it seems it is a matter of Yes or No.

And I don't have an inkling or even the right to offer an opinion on this...the decision is such a deep and personal one to make. I wish I could offer something more concrete to help you...just a real helpless feeling right now for me - seeing someone suffer and hurt - and then searching and finding nothing of value to add to the discussion that would help alleviate your anxiety.

You know I've talked to you about what your story has meant to me personally - and what I think it represents to the community as a whole...I'll always feel that way...just wanted you to hear it again:)

I will stand here with you during your time of need, however...and I will hope that your answers will be forthcoming - and that you will be okay with whatever decision that you make.

-Craig

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

That is a tough situation mate and unfortunately it only gives you tough options. In my mind I have always pictured cancer as a war. If you give it an inch it takes a mile . There are a lot of young people injured dreadfully in wars,roadside bombs are not particularly selective. Their injuries are terrible and it takes a lot of care and patch work to keep them alive. In a lot of cases they are facing results similar to yours. In most cases they are not given the option on surviving or not. The work is done and they must survive the best way they can. Why because their countries feel that they owe them that for teir scrifice. I wish surgeons were the same with cancer patients. You are a very worthwhile human being. You have served the people of your country. In my view you desrve to be given a chance to see your family grow. That's how I see it. Good luck whatever you decide,Ron.

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

That is a tough situation mate and unfortunately it only gives you tough options. In my mind I have always pictured cancer as a war. If you give it an inch it takes a mile . There are a lot of young people injured dreadfully in wars,roadside bombs are not particularly selective. Their injuries are terrible and it takes a lot of care and patch work to keep them alive. In a lot of cases they are facing results similar to yours. In most cases they are not given the option on surviving or not. The work is done and they must survive the best way they can. Why because their countries feel that they owe them that for teir scrifice. I wish surgeons were the same with cancer patients. You are a very worthwhile human being. You have served the people of your country. In my view you desrve to be given a chance to see your family grow. That's how I see it. Good luck whatever you decide,Ron.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Steve, my heart aches for you. This is truly a difficult decision. I pray that you will will know what to do in your heart and that you will find peace and assurance that you have chosen the best path for yourself and your family.

Love and Light to you in this difficult time.

Sincerely,

Phil

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Dear Steve,

We all would love to help you make the right decission. Unfortunately, there is no right decission, then only pro and con. Weigh them and discuss with your team and family.
No one can make that decission for you. A chance is a chance is a chance.
So is hope. There is always hope.
I wish you hope and I offer light and prayers.
hugs, Marjan

RobinKaye
Posts: 93
Joined: Nov 2011

I can't even venture a guess as to how I would feel in your shoes - too frightening to imagine.
I do know how I would feel if it were my husband and the father of my two young children, I would want you any way I could have you. As for the kids...think ahead to their wedding day, do they want to be missing you or do they want you in whatever capacity there for them?

Watching my husband these last seven months, reading your post today...it breaks my heart.

Robin

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

What can be said that hasn't already been said.
Shock and Awe right now..
I don't have children but I do understand your wanting to be here for them. Not quite the same but that was my moms battle with Breast Cancer.. though not as intense as yours..
I don't know how anyone could make this decision.. both sides of the coins are weighted with What IFs.. I tend to lean the direction of my medical profesionals believe is best for me.. but you have to decide when to say you have had enough.. the surgeries seem intense. I just don't know..
I am going to send you lots of Positve Engery to hopefull help you find the answer and some peace..
+++++ Energy +++++
<>
Donna

healynn
Posts: 4
Joined: Jun 2012

As you know I am new to the discussion boards. I read your post and wept, you are so compassionate and give hope to those that are scared and you are dealing with a very frightening situation yourself. It is obvious that you are loved by many and you also responded to my post about my dad. I am a mother of a 9, 5 and 3 year old and know how meaningful it is to be there for them and I am also a daughter of a father that has been battling colon cancer for 11 years and recently found out he has mets to his sacrum. I worry my dad will not be there to walk me down the aisle or see my youngest start kindergarten. You and only you will make the right decision for you. I say go for the surgery, there is a chance for you, a chance to be there for your children I am so sorry that you are faced with this, it just is not fair. My thoughts, prayers and love is with you.
Heather

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

the cancer is very slowly progressing
It seems to me you are in a largely experimental area here, even with the proposed surgery.

My question is if it is possible that this tumor's progress can still be significantly stopped, slowed, or tipped into reverse without additional side effects from other/additional adjuvants. My approach to my wife's cancer has been to add less accepted modulators and adjuvants on top of conventional (Japanese papers) chemo, until the biomarkers stopped (CEA) or reversed (CA19-9), and campaign against metastasis, starting with cimetidine. In our case, multiple adjuvants and a partial resection (1st surgery, bought over a year of very high quality even with obstacles, inadequate doses, and errors) over fatalism and disbelief. This year+ of stasis also qualified my wife for her second surgery, where surgeons typically demurred as inoperable. One other item that you might investigate and address beyond our experience, is regional hyperthermia to amplify the chemo.

When I feel cornered, I beat the bushes for credible technological hints, and start generating data, faster. Given a choice of failure, distasteful consequences, or opportunistic research, I hit sources that appear to have worked various issues, integrate the data, the science and the odds myself. Then I work to execute on delivery and measurement.

taraHK
Posts: 1961
Joined: Aug 2003

Steve -- it is a huge decision and I certainly understand why you are feeling scared and uncertain. Whatever decision you make will be the right one, I know.

I've always maintained that I wouldn't necessarily do 'anything' -- there may well be a time when I say "enough". And lord knows quality of life is very important -- and a 'worthy' motivation.

Have to admit my own bias -- as I think you know, my kids were 10 and 12 when I was diagnosed. I certainly haven't had to face anything even remotely as difficult as you are facing now-- but I have to say being able to be a part of my children's lives for the past almost 10 years (since my diagnosis) has been indescribably wonderful. They don't care one iota that I have a permanent colostomy, no hair, an IV pole stuck to my arm or anything. I am just their mum.

Sending prayers and best wishes your way

Tara

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Seems to me you have some pretty solid ideas going on and one of a heck of a decision to make. I would give up what ever I had to give up to stay on this earth and be with my family. As long as that involved quality in the life. Kids don't care what body parts you gotta give up.....they just want you there....and you sure as heck want to be there that's obvious. Seems like an opportunity to me to move onward. YAY! You take care

Jennie

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi Steve. It looks like you have already received a lot of great advice. You do what you feel you need to do. For me I look at it like this. I would take a bullet for my child without thinking of it. I will do everything possible to be here to watch her grow up and share my life with my husband. When I feel like a burden my husband and daughter tell me they will take me anyway they can get me. I try not to think too far out into the future. I ask myself - can I make it through thus surgery. If you have a urine bag at least you don't have to worry about diapers when you are older (bad attempt at humor). There are no right or wrong answers Steve. If you choose the surgeries like will change but the most important things remain the same. My prayers are with you. Follow your heart. You are already a hero.

janderson1964
Posts: 2215
Joined: Oct 2011

What a tough post to read. I am so sorry that you are faced with such a gut wrenching decision but the upside is that at least you do have a choice option. I am a firm believer in surgery however i was never faced with such a life changing surgery.

I do not have kids but i agree with you that your kids are something to consider. I know that i have been and will continue to suffer as much as necessary to be around for my wife.

Even if the surgery doesnt cure you it is likely it will buy you more time than without the surgery.

I will keep you in my prayers.

Jeff

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

just remember family is wonderful life too has my opinion. But only you can't take such a intimate decision my dear friend!
Hugs, blessings and god vibes from here.

steved
Posts: 835
Joined: Apr 2004

Thank you to all those that have posted their responses- as a group your kindness made me weep. I feel priveleged to be able to access such a wise thoughts.

Mags/ Winter MArie/ Phil/ Jeff/ Vickilg/ Donna/ Robin- your caring words mean a lot and I appreciate them. I am not looking for solutions in this as I don't think there is one but your kind words make the decision easier to see.

Sundance your clear thinking is as ever incredibly appreciated.

Taanstfal- I can always rely on you to have another perspective and the thinking you bring from that angle is invaluable.

TAra the pure length of your journey always means your wisdom shines through in your post.

Heather/ Tommycat- I appreciate your special perspectives as parents of young children, which I think is a component of our journeys that provides different challenges, that I love your thoughts on.

I talked thing through with my wife last night and have told a couple of close colleagues and friends at work. My decision at present which I think I started to make while putting my first post up (so often simply writing things brings a clarity to our thoughts) is to proceed with putting plans towards the surgery together. It is through getting the details of it planned that I will know more of its potential and can make a final decision to proceed or not. I have arranged to meet the surgeon with my oncologist and will meet with the enablement team (who do prosthetics and rehabilitation) to get a clearer idea on the level of disability I will face. They are developing a team of surgeons from around the country and perhaps from DEnmark together to work on the details and I will work onthem with it. I can pull out at any time.

I talked with my wife also about how we tell the children. I would appreciate other people thoughts on how they approach this. So far we have told the kids teh stuff we KNOW- I have cancer, I have a sore leg, I am on treatment. We have not told them the stuff we don't know including leaving out the 'it is going to kill me one day' aspect thinking that it is the uncertainty they struggle to manage and process. I don't think there is a 'right way' of handling the kids but woiuld like to know others' thoughts.

Again thank you all for your kind and wise comments- you are truly overwhelmingly brilliant.

steve

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

shrink the tumor and then may be ciberknife or so?
Hugs my friend!

steved
Posts: 835
Joined: Apr 2004

I have looked at chemo options- I have been on irinotecan and have discussed teh new ones with my onc as wellas looked at the data on them. In truth no chemo is likely to offer me a cure. The evidence suggests in stage 4 for pretty much everyone they are holding tactic. They prolong the nonprogressive phase of the illness but are unlikely to kill it. It is the same as my understanding of Taanstfak approach- he is an expert at techniques to combat the illness but I feel they are mainly going to hold teh illness at best.

In truth in this battle surgery is the main option to offer cures- best chance at that first surgery removing the primary before it spreads, but still some chance if your secondaries are sufficiantly localised in places they can cut out.

That bluntest tool of the sharpest scalpel remains our biggest weapon (feeling poetic today).

(I will try and find time to relook at the two new chemos and comment my impressions of them on another post as I know you are exploring them and I have foind some reading I need to wade through on them)

steve

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Just to clarify our strategy is:
"Comfortable" multimodulated immunochemo even during surgery to stop new mets (#1) and shrink/eliminate/inhibit old tumors, multiple surgeries to definitively eliminate local lesions when (finally) identified rather than "heavy chemo" only. We use surgery to achieve lower CEA or tumor burden, and plan to use surgery beyond the "normal" limits of maximum tumor sites instead of chemo to address metastatic masses.

An outstanding question of efficacy is whether we could debulk (R1, R2), if it were necessary, to avoid critical structures and still make net progress without inciting metastasis. Our first time, my wife apparently had an R2 situation with the mesentery but the immunochemo even before the UFT(5FU) treatment wiped the fatty invasion but not the primary or para-aortic cluster(second surgery).

In the case of an aortic involvement, our surgeon was confident to do the block cut and artery repair if necessary (wasn't).

We aim to:
successively, curatively remove individually (old) tumor sites as they are recognized after watchful waiting;
"stretch out" the intervals between surgeries with multimodulated immunochemo AND max QoL.
It was this multi-trim and stretch out strategy that I was wondering if it could be adapted, where more tumor cell control after R1, R2 is required of the multimodulated chemo.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I have to disagree with you there are here many survivors which have been NED being treated just with chemo ,I mean Stge.lV, who had a recurrence and the recurrence has been grated with chemo only.
I think is a better option !
Hugs and very good luck in your decision Steve !

steved
Posts: 835
Joined: Apr 2004

Have done oxaliplatin and xeloda together (what you call FOLFOX) then with avastin. I had an allergic reaction to oxaliplatin so now remain on just the avastin and xeloda- recent trials have shown this is just as effective as with oxaliplatin for some. I have never been on irinotecan (what is in the concoction named FOLFIRI) and not tried cetuximab either though as they have none of my tumour to do KRAS on probably would struggle to get it.

Have talked it through with my oncologist and she is clear that she doesn't feel chemo would be at all likely to be curative. It could jhold it and that would be the plan if I don't do surgery. I know of stories of cures from these chemos (often clouded by other treatments including surgery) but realistically none of them claim to be cures.

I guess as for allof us it is a game of weighing up the odds- they are usually all crappy in my experience

steve

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

shrunk till disappear so the result was great ,I know few months later in both cases there was a recurrence but in a different place ! so in my opinion you got a big chance to get cured through chemo! I'm sorry to insist I know I can be a little bit heavy but it's been my reality my friend! think that both two ( you and me) have to arrive to the world cup, in brazil ,in good shape!.LOL.As you have asked I'm trying to give you solutions so if l were you l would try with a couple of rounds of chemo and if you see a drop in your CEA, then continue,if not then go to surgery .
Just trying to help to a friend .
Hugs dear friend.

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Again Hi Steve,
I did not mention it before in my reply earlier, but I have been there were you are now with my husband. He lost his left leg and was able to function very wel after rehabilitation,walking, driving etc. I was amazed how quickly he adapted, Ofcourse every case is different.
Your kids are very young and they will understand part of it, kids are also very resilliant.
They wil understand that their Daddy is ill, but that the doctors are trying to make him better. That it might kill you ( your expression in your post) is not on the order right now. If it get to that point then there is time enough to inform them of that possibility, if you tel them now then they will worry every day for something we all hope will not happen for a long long time.
Ask your team of doctors if there are books for children how to deal with illnes of a parent.
I am glad that you have made a decission and are moving forward. Keep your options open.
My thoughts and prayers are with you and your family.
Marjan

steved
Posts: 835
Joined: Apr 2004

It is strange how here on this board of people with the same illness you can still feel like the only one with the problem. In that I appreciate your husbands story.

I do think my kids will understand- my greatest sadness is that their whole lives have existed under the shadow of my cancer as my wife was pregnant withour first when I was first diagnosed. However, they never cease to amaze me with their resilience and acceptance. I do want to be thoughtful and minful of how we handle this next stage though. My son i 8 and very sporty and a lot of our relationship is based on doing sports together as it is one of my loves. I have been able to do increasingly less due to my leg and will need to adapt if I lose the leg completely. It will be a loss for my son too. My daughter is only 4 (5 in July) and I feel her young age means more goes over her head and is jsut accepted as the way it is.

steve

smokeyjoe
Posts: 1428
Joined: Feb 2011

Steve......I don't know what to say. When I read your situation I get so friggen frustrated.....I'm speechless.....all I can think is there must be some other way!!! Have you looked at clinical trials...dumb question, of course you have.....hugs and best wishes to you.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

ages 5, 14 and 17 when I was diagnosed. My sister had died of cancer a few years before, leaving behind her teenage son, so my children (at least the two older ones) were well aware of the threat that cancer posed. One of my daughters asked me directly if I was going to die, and I had to tell her that in all honesty I didn't know. I told her that I had a good team of doctors working for me, and that I would do everything in my power to beat the cancer, and that if at all possible, she should focus on the present and not worry about what might or might not happen in the future. I think I would not have brought up my possible mortality with her if she hadn't asked, but since she brought it up I felt the need to address it as honestly as I could. But that was dealing with a teen..when my little guy told me he didn't want me to die, while crying hysterically, I just assured him that I was going to be around a long time (and I'm still alive three years later, which is an eternity to a kid his age, so that was true in its way). Like you say, there is no one right way to do things (my sister's son wasn't told she was dying until two days before she went into a coma, and i honestly don't think that changed his experience of grief after she was gone one way or another). My only thought would be that at this stage of things you still have hope for the future. It sounds like there will be a heavy price to pay for that hope, and I'm so sorry you have to make such a terribly difficult decision, but in the eyes of your kids, it will be a very real thing that you can offer them...hope that you will be around for many years to come. Sending strength your way-Ann

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I don't know if these are part of you assembled teams but I wanted to give this to you as food for thought.
The colostomy and Urostomy will require care.. be sure to include wound nurse and proctologist and urologists in the plan as you or your wife or another caregiver will need to know what to do with these Stoma's... making sure the appliances you use fit properly and you or someone else now how to care for them... may seem rather simple but believe the first time you have to do it on your own or you have an incident it all become very humbling....
Just sayin'

Glad you have a plan...
much love and support on this side of the pond...
Donna

danker
Posts: 1188
Joined: Apr 2012

What tough choices you have. I'm sure whatever decision you make, it will be the right one. My best to you, brave one!!

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Hi Steve. I'm very sorry to read about this horrible choice that faces you; this is one time that Occam's Razor pretty much flies out the window. I've thought and prayed about your dilemma and can only say that I would have the surgery. Perhaps what you could do is sit down in front of a mirror and hold a counselling session with yourself as a patient. Ask the questions that you would of a patient who came to you with this problem and then answer as you would as a patient. A bit of self-imposed bi-polarism, I suppose. I will pray that whichever your decision is, that it is the correct one and you have spectacular results.

God Bless

Doc

steved
Posts: 835
Joined: Apr 2004

I have found people's responses incredibly useful- I am sorry that I am imposing my feelings impotence in this decision on others as I know there is no 'right' answer and no specific thing others can say but hearing people's thoughts has helped enormously to get my own head ('ducks' to quote another regular) in order- you guys are my mirror I can sit infront of for therapy.

Thank you also for the thoughts around the children- I have so many supportive and sensible friends locally who are also parents but none face dilemmas like this and so your thoughts mean so much (I still feel surges of irrational jealousrage that my friends lead such straight forward lives). I cope fairly well with most of this but still find thinking about the impacts on my children the one intolerable avenue I can hardly bear to go down.

Thank you again for all the marvellous responses.

steve

deb824
Posts: 21
Joined: May 2012

I am new but had to comment on your post. I can't even imagine how you must feel, but I applaud you on your strength and compassion for others as you go thru this journey. You took the time to answer my first post yesterday and I so appreciated it. After reading your post today, the fact that you took the time to try to help me makes even more grateful. My thought on what to tell children.....My daughter was 4 when my Mom was diagnosed with metastatic breast cancer. I fell apart and was crying alot and my daughter knew something was going on. I was advised to just tell her the truth without details. And that was the best advice I could get. Good luck Steve you are so very brave I wish for you a good outcome whatever you decide. I will keep you in my prayers.
Deb

smokeyjoe
Posts: 1428
Joined: Feb 2011

I go from time to time to check on avail. clinical trials, so I know what's out there should I have progression.....this one in particular was of interest to me...don't know if it's available in your area....Home About this site Cancer View Canada Français A- A+

Gamma-Secretase Inhibitor RO4929097 and Cediranib Maleate in Treating Patients With Advanced Solid Tumours

SummaryTrial DetailsEligibilityCentres / Contacts Trial Status: Recruiting
Start Date: May, 2010
Expected Enrolment: 50
Type of Trial: Treatment
Protocol IDs: NCT01131234, CDR0000673867, CAN-OCI-PJC-004, PJC-004
Trial Design: Masking: Open Label
Primary Purpose: Treatment
Trial Phase: Phase 1
Medical Conditions: Brain and Central Nervous System Tumors, Breast Cancer, Colorectal Cancer, Kidney Cancer, Lung Cancer, Melanoma (Skin), Ovarian Cancer, Pancreatic Cancer, Unspecified Adult Solid Tumor, Protocol Specific
Drugs: cediranib maleate
gamma-secretase/Notch signalling pathway inhibitor RO4929097

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

when I am in treatment, especially chemo, I can find myself wandering down the street thinking.....all alone....just me...no one else knows or feels as badly as i do....the WHOLE world goes on and only I am here suffering.....hahah what crap

the longer I live, the more I see suffering in every single life. All around us cancer or not just plain suffering.

talking to you Steve is like carrying coals to Newcastle....if I may speak about your kids for just a sec as a retired teacher. Do not ever lie to them...kids have shite detectors that are sooooo strong. As you have been doing age appropriate info....whatever you determine that to be....One family amongst our close relatives always says ..."shhhhh don't tell the kids" Very soon after our daughter's birth we determined that was not the route we would go. We shared with her and soon she could tell if we were "holding out on her". Then she was hurt and angry to be out of the loop. My girl was 22 with my diagnosis...it was the most difficult thing for me.....protecting, helping, her....seeing her suffer....it was and is a kicker. Yup I think your reaction as a parent is pretty standard and pretty good stuff Steve.....hahah told you ....coals to Newcastle....

have a hug

mags

steved
Posts: 835
Joined: Apr 2004

I think we would agree a lot about parenting (good thing if you are to be a surrogate mother). My kids can certainly pcik a lie a mile off and kids carry anxieties about the stuff they don't understand pretty heavily. We answer their questions very openly but is harder sometimes to judge how much info to give when they aren't asking.

What I do know is they are incredibly resilient. I lost my own parents when I was 9 and have always been amazed by how I was able to carry on- it affected me but not in the same way as it would if if I was older. In many ways the younger they are the more protected by obliviousness they are.

Parenting- its all about guilt anyway!

steve

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

As always, your thoughts are full of wisdom. You're so right about "the longer I live, the more I see suffering in every single life." That comment reminds me of a great quote which I keep at my work desk "be kind for everyone you meet is fighting a hard battle" attributed to Plato. Ever since my own diagnosis, I'm learning about others' challenges. Certainly puts my own in perspective.

My thoughts and prayers are with you Steve.

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

As always, your thoughts are full of wisdom. You're so right about "the longer I live, the more I see suffering in every single life." That comment reminds me of a great quote which I keep at my work desk "be kind for everyone you meet is fighting a hard battle" attributed to Plato. Ever since my own diagnosis, I'm learning about others' challenges. Certainly puts my own in perspective.

My thoughts and prayers are with you Steve.

steved
Posts: 835
Joined: Apr 2004

Thanks for the info- will have a look. I am not convinced that chemo of any sort will offer a good chance of cure for me but am keeping my eyes on all new treatments so will see what I can find out about this.

Thanks a lot for the information,
steve

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I hate to read of people suffering in this manner.....

I hate to sound brazen or condescending, but as a physician,
have you totally ruled out TCM, or would that still be a possible
medical science that you may want to consider along with or
in place of, such radical measures?

My best of hopes, whatever your choice,

John

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Hi Steve, I also wanted to just tell you how sorry i am that you are faced with such a decision. I have no words to make telling the kids easier. But as a mother of 4 and grandmother of 11, I can suggest this.
kids pretty much accept things their parents tell them. if you are calm it will help them to do that easier. They are very young, so just answer what they ask. Tell them what is going to happen,. Prepare them, but don't overwhelm them with too much info.i am sure you already know this, but its the only way I can even try to help you.
Hugs to you and your family, prayers coming your way.
Judy
EDIT: Mags, I just read your post, great minds think alike.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

With so much on the line I pray you are guided to a decision you are comfortable with. That the hard thing with cancer we have to make such tough decisions. I will be thinking of you and family. Jeff

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hi Steve,

You have been given the gift of hope. You must not let yourself be burdened with a heavy sense of wrongness. I would hope for good news for you ~ the key to peace that surpasses pain, to a confidence that dispels confusion, to a hope that replaces heartbreak. Blessings and much hope to you Steve.

~Minnesotagirl

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

It's such a tough call and having young kids make it even tougher.
Only you can decide what is best for you...
I wish you strength and peace,
-phil

janie1
Posts: 753
Joined: Apr 2011

Oh Steve, why is everything sooo hard.
I wish you the best in making these decisions, and a very good outcome down the road in whatever you decide.
Bless you and your family.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

after reading tori's post on my fb group, going to pm you and you better follow it mr it's 3.19am been up for two hours with a sick cat lol. seriously though hopefully it will be helpful.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

you can count on my support whatever you decide. i have appreciated your kindness to me at more vocal moments here.

if i were you, i would be practicing hoping around with some bags taped on.
my father in law has a pee bag, i had the poo bag. it just another bag.

my adoptive father had one leg, he loved my dearly. i found him dead at 14 from a heart attack. he lived his life with courage and mateship. i am the man i am with no fear, just hope driving my decisions because of his example and love. now when i die more awareness and my direct involovement to make this planet better ceases in a physical sense. so you need to keep on breathing.

here is the biggy, i was meditating deeply at the ian gawler "the brain the changes everything" weekend seminar. into my blackness, my awareness i here a clip, clop, clip, clop.

it is ian, on his one leg abd crutches going down the isle. he reminds me of my father. ian lost his leg about 30 years ago to bone sacroma, checkout his amazing story, "you can conquer cancer".

a few examples of one legged men that inspire me, you may be another if it has to come to that. now i have discussed you post with my kids, my wife and my weight trainer vegan guru. he focus on my health is more focused, its not driven out of fear, but love of life and based around courage. everything i am doing is based on the gawler foundation framework, but i found me truths myself, but here it from another source was all the confirmation i needed to stick to my plan for my treatment for this challenge i have. you have a differnet challenge, but i suggest courage and peace of mind will allow you to make the right decision for you.

living on a raw vegan diet, juicing, meditating etc etc are so simple, now i have mastered them. what is hard is our attachments to our old western life. if you want to read a great survival story read ian's book, its motivated me and gives me hope. it may also be good you.

last night my daughter mel sang in a 2000 kids choir at our entertainment center in front of 20000 people, what an experience for her, for me and my family and friends. our kids grow fast and so do we.

whatever you decide i hope you have peace of mind, its healing and helps when making big decisions. it helps with living a full and wonderful life. full stop. if its you cup of tea, try a little mediation not medication. its also good for pain relief.

hugs,
pete

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

Steve,
Tough choices for you ahead.
I had a dx of sacral cancer last year - the put your affairs in order kind. I wanted so badly to be around for another grandchild or two. It turned out not to be cancer at all. Funny thing is it changed me as much as my cancer dx did. Now that I have been around for another year and saw the birth of a couple more grandchildren I can honestly say that seeing those kids born and growing up has caused me to resolved to do whatever it takes to be there for as long as possible. I LOVE those kids (and mine). I don't know what the conditions would have to be to cause me to wish for anything but to live as long as possible, but I do know right now I would live with just about anything in order to stay around for a while longer. I feel like I have more life to live. Sounds like you do too.
I hope you find peace with whatever you decide.

Rick

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Wow - what a tough spot to be in. I'm all for surgery, but I'm also all for quality of life, even over quantity. For a guarantee of no more cancer - heck yeah. But without the guarantee - almost impossible to make that decision. I totally understand the difference of making decisions when you have young children involved too. There are things you would never consider, but will for them. (Mine were 13, 15, 18, and 21 at my dx - older than yours, but I get it.)

Talk it out with your family. Talk it out with your clergy person if you have one. Talk it out with a counselor. Talk it out with your medical team some more, until you find which direction has more positives and which more negatives for you. And once you make your decision, go forward and never look back - no "what-if's" allowed.

I really feel for you. I wish there was more we could do for you, but ultimately this is your decision - the toughest one you'll likely ever have to make. No matter which way you decide, my wish for you is peace with your decision.

WhatsA_Mom2Do's picture
WhatsA_Mom2Do
Posts: 46
Joined: Sep 2010

Steve, this was a tough post to read through my tears. You have already been given wonderful suggestions by the members here. I only want to offer my support and prayers to you and your family as you are faced with these choices, which are never easy. Go with your gut, go with your heart, go with what will give you the best chance of being with your family and with what will give you the QUALITY OF LIFE you desire! I do second some of the advice on looking into natural approaches...has worked MIRACLES for my son! God speed and all the best to you and your family! Dee

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