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Running out of options

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

Well I knew this day would be here some day but never thought reality would be so blunt. I have scan results today and to my suspect ions my onc said Styrvaga, chemo pill I've been taking since January were nno longer being effective. I've'twas orinally dx with stage four colon rectal with meta size to liver and later lungs. I've been fighting as hard as I know how. Recently I've have to get blood a lot and am skin and bones. My onc is going to try a Mitomcin treatment this Thursday. Has anyone had it? Iknow there are other chemos for colon rectrum in the works and will try to hangOno as long as possible. I'm in the hospital tonight getting 4units of blood. Please pray for all of us in this cancer world. My scans showed this time tumors in liver and lungs have grown anew new ones are present.  I'm really worried now. I pray for more time but we never know. Jeff

jen2012
Posts: 1607
Joined: Aug 2012

You have my prayers Jeff. 

Luckygirl2
Posts: 308
Joined: Mar 2012

Prayers to you and your family.  Will keep you in my prayers.

 

Debbie

Cathleen Mary
Posts: 827
Joined: May 2011

 

Jeff,

My prayers and heart are with you as you look for more options. This disease certainly doesn't play fair.  

You have an incredibly resilient spirit and we are all hoping with you. Hang in, my friend.

 

Cathleen Mary

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

You have my prayers Jeff, fighting and hope is all we have, one day at a time, 

hugs Marjan 

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

We are sending our thoughts and prayers from the AZ.   We all are going to have this battle in front of us. 

 

Best Always,  mike

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

This disease is just so unfair.  I wish that I could wave a magic wand and make things better for all of us.  I hope the new tx will be effective for you.  Hugs~AA

wolfen's picture
wolfen
Posts: 1321
Joined: Apr 2009

As you fight on against this horrible beast. Hoping whatever the doc comes up with next will be "the one".

Luv,

Wolfen

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I know you've had a terrible time with all that you've gone through, Jeff. 

Very upsetting news to hear of new areas to watch...of course, it makes you uneasy, it's always the not knowing that's doing it to us...it wreaks havoc with our insides. 

Wishing strength for you to keep up the fight...

The entire community is pulling for you:)

Miss Cindy L's picture
Miss Cindy L
Posts: 34
Joined: Dec 2011

My thoughts and prayers and positive energy are with you my friend.

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

Sending positive thoughts to you and your family....your strength is inspiring. 

Wishing and hoping for more options.......~ Ann

tachilders's picture
tachilders
Posts: 313
Joined: Jun 2012

Heartbreaking post.  I will keep you in my thoughts and hope that they find something that works for you.  I know that one day I will most likely be in the same position you are in now, so it really affects me when I read posts like this. 

Tedd

janderson1964
Posts: 2215
Joined: Oct 2011

I am really sorry to read this Jeff. I will keep you in my thoughts and prayers

stephz620
Posts: 2
Joined: Dec 2012

Have you considered some non-surgical non chemo options to reduce your tumor burden? What about less conventional chemo regimes, such as ones that utilize gemzar or even a clinical trial. Temozolomide seems to have a better effect on refractory mCRC than mitomycin c. Academic litterature tends to consider mitomycin no better than best supportive care. Maybe you could get an indepth tumor profile done at some place like CARis to see if your specific tumors have rarer histological characteristics and would respond to unconventional chemos.

Temozolomide link:

http://jco.ascopubs.org/content/29/10/e262

 Mitomicyn C:

http://www.ncbi.nlm.nih.gov/pubmed/22330318

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I'm sorry to hear the bad news,I hope the new treatments work.I will keep you in my prayers.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Dear Jeff:

I am so sorry to hear this report. I hope you can gain strength and there is another option for you.

We never know how this disease will hit us or give us a break. I scan in August and dread it.

My liver tumor progressed after 4 cycles of folfiri and now I have had Sirtex radiation put in my liver tumors.

Can you ask about this treatment - it is so much easier than chemo and being used more frequently.

I have one left lung nodule that may be radiated if it grows. It's all so trying on us.

I pray for our group here, yourself and others in my support group.

You have always been so supportive of others - Barb

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

i had mitomycin, it worked really well in combo with  avastin injected straight into the liver using tace. 

almost all the colorectals going to hallwang clinic are tested for mitomycin, its a pretty effective cheap chemo.

do it in an ipt setting if you canot do tace in the usa.

goodluck, i still suggest exercise as the single largest vegf inhitibitor via hif pathway. 

just do 60 pushups, oygenate your body, it stops the aggressiveness of the the tumours per my reseach.

pm me anytime.

hugs,

pete

renw's picture
renw
Posts: 282
Joined: Jan 2013

If you are willing to walk on the wild side there are other options:

 

Dichloroacetate

2-deoxy-d-glucose

3-bromo-peruvate

methyl jasmonate

 

just to name a few.

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

My prayers are on the way.

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

I really appreciate the ideas. I will look into some of them. I got four units of blood on Tuesday and Wednesday so hopefully I will get some energy. I was suppose to get Mitomycin c today but platelets were too low.  Try again next Tuesday. Thanks. Jeff

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

I am quiet friendly with a really good usa alternative doctor, his name is robert, he spoke at a conference I was also speaking at.

he specialises in ipt chemo, insulin potentiated chemo.

the book he wrote a chapter in defeat cancer, I mentioned hear months ago. it might be worth considering as the point of low dose chemo is to have the benefits of chemo without the extreme side effects, ie bone marrow suppression. its the main reason I cam back to germany, its not offered anywhere in australia. you are lucky its available inthe usa. 

the book is a good read, but just read the stuff on ipt.

the conference was on gcmaf, which may or may not be helpful, you need an immune system to be activated

just a few suggestions.

goodluck with whatever you do.

hugs,

pete

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

I hate to hear this news. You are so strong and such a fighter. I hope you can get the mitomycin and that it will work for you. You'll be in my thoughts and prayers.

Sandy

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Jeff,

Your situation is apparently difficult.  Please accept my positive thoughts for comfort and strength in this very stressful time.  

Art

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