Clinical Trial - Round #3

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NWgirl
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Clinical Trial - Round #3

Postby NWgirl » Thu Nov 20, 2014 6:07 pm

Just a brief update on round #3. I waited 2 weeks from the last infusion to get this one. Ideally they would like it weekly, but I just can't do it.

Treatment was pretty much the same - tons of anti nausea drugs, the trial drug and then check in at the hospital. The nausea/vomiting started around midnight or so - about the same amount of time it took the last time to hit me. Thankfully I didn't have any diarrhea to speak of, so that wasn't too much of a problem. I had put on a brand new bag that morning hoping the seal would hold out - and it did. I had some sort of heart monitoring device on me at all times. It only went off once when I had to go to the bathroom and empty my bag and pee - you know how much that gets your heart rate going - lol! :lol:

I think I vomited for several hours. I think I got into a big argument with a nurse over why - with a port - they had to access a vein in case something bad happened and I had to go to ICU and they would be mad if I didn't have 2 "life lines". I think I may have had some pain issues at some point (according to my friend who was with me) but for the most part, I don't remember much of what happened once - as they say - "the shit hit the fan" or something to that effect.

I ended up staying 2 days in the hospital (Tues night thru Thurs a.m.) or 3 if you want to count Tuesday as a day. On Wednesday I spent the entire day and night sleeping - I don't know how I could have slept that long, but I did, and I evidently needed it. I'll have to ask my friend to fill me in on details - I really don't remember much of what happened or what I said.

My oncologist has been checking my CEA weekly and it drops by about 5 points every week - so that's good - right!? That's what I need to see to give me the courage to do another round of this drug. But it won't be for another 2 weeks because I don't want to be sick on Thanksgiving week!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

peanut_8
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Re: Clinical Trial - Round #3

Postby peanut_8 » Thu Nov 20, 2014 6:49 pm

Belle, I can't imagine doing that once a week. Every other week is still quite a lot. The dropping CEA levels sound really encouraging. Hopefully that will continue. How long does the trial go on for?
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

NWgirl
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Location: Battle Ground, Washington

Re: Clinical Trial - Round #3

Postby NWgirl » Thu Nov 20, 2014 7:08 pm

I'm not sure how long the trial will go - I'm not sure they've decided yet.

I meant to mention that a trial for this drug will start at Duke University soon (may have already started) and will soon open at a couple of other sites - but all on the East Coast. Only this one in Portland on the west coast. If anyone wants the names of the other sites, let me know. Now that you know the side effects, you'll know it's not fun. I have a CT coming up December 2nd - so once I have the results, I will of course post them here. Immediately if they're good; and if they aren't good, I'll post them after I've numbed my emotional pan with a nice glass of wine (or bottle of wine) or someting quite similar.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

weisssoccermom
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Re: Clinical Trial - Round #3

Postby weisssoccermom » Thu Nov 20, 2014 7:29 pm

Belle - I know that this can't possibly be any fun BUT....it does seem like you are getting some results. I don't know what your CEA is but 5 points can be a significant percentage drop in that test. Whatever the percentage is....the facts are simple. Your CEA IS going down and you have always said that CEA is a good indicator for you! I don't think I would worry about the weekly vs every two weeks schedule. What matters is the test results indicate the treatment is doing something POSITIVE and that's what counts.

You are truly an inspiration to everyone Belle. I'm so proud of you for taking this trial on. Take care. Get some rest so that you can feel better for Thanksgiving.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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NWgirl
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Re: Clinical Trial - Round #3

Postby NWgirl » Thu Nov 20, 2014 7:33 pm

CEA at the start was 64; it is now down around 59 as of last weeks blood work. :D

Correction - it was 64 and its dropped around 15 points so it must be closer to 49.
Last edited by NWgirl on Fri Nov 21, 2014 4:07 pm, edited 1 time in total.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

midlifemom
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Location: NJ

Re: Clinical Trial - Round #3

Postby midlifemom » Thu Nov 20, 2014 7:55 pm

Belle, you are amazing. Thank you.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

teachpdx
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Re: Clinical Trial - Round #3

Postby teachpdx » Thu Nov 20, 2014 8:30 pm

Belle I'm sorry that you have to go through this, butt you are getting results. Good thing you are in the hospital and you've got someone with you that can tell you what happened.

Hope you feel better soon. Peace :wink: Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

bitchslapped
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Re: Clinical Trial - Round #3

Postby bitchslapped » Thu Nov 20, 2014 8:41 pm

You know I must be missing just what trial/drug you are in by postings. If you've posted it somewhere, please excuse me, but couldn't find it. Has there been any talk about adjusting each dose vs spacing time between dosing? Isn't this a Phase I? You'e mentioned they would like you to come every week, but the side effects sound so severe for you, it is understandable.

Bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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DK37
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Re: Clinical Trial - Round #3

Postby DK37 » Thu Nov 20, 2014 9:06 pm

To echo another comment Belle - you are AMAZING.
Thank you again for being such a trailblazer!
BTW Sometimes with immuno drugs the effects on CEA and CT can happened in a delayed fashion (compared to how those tests behave with chemotherapy). This is something that people in the early CTLA4 clinical trials had to get used to - some long term highly responsive patients didn't necessarily have the instant CT-scan shrinkage results seen with some other types of drugs when "they work". Sometimes tumors even appear to swell slightly if infiltrated with a lot of immune cells but a good radiologist should hopefully be able to tease out that effect.
I think it is GREAT NEWS your CEA is already dropping!!!! Based upon other immunotherapies, a 5 CEA drop may actually appear less than the actual real clinical benefit you might be getting. But since you are patient #1, all are guesses at this point how this particular therapy will behave. Swinging chickens for you big time!!! Take care-
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
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orcasres
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Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: Clinical Trial - Round #3

Postby orcasres » Thu Nov 20, 2014 9:59 pm

Belle,

It takes a lot of courage to face this every two weeks. Thanks for doing it. Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

jens22
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Re: Clinical Trial - Round #3

Postby jens22 » Thu Nov 20, 2014 10:03 pm

Belle....you are amazing!!! Inner strength is incredible. I hope the next one lets up on the nausea!!
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

NWgirl
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Re: Clinical Trial - Round #3

Postby NWgirl » Thu Nov 20, 2014 11:58 pm

bitchslapped wrote:You know I must be missing just what trial/drug you are in by postings. If you've posted it somewhere, please excuse me, but couldn't find it. Has there been any talk about adjusting each dose vs spacing time between dosing? Isn't this a Phase I? You'e mentioned they would like you to come every week, but the side effects sound so severe for you, it is understandable.

Bitchslapped


The drug is MGD007 and the mfr. is Macrogenics and yes, it is a phase 1 trial.

I don't know if reducing the dose is an option. I always mean to ask and then when I'm there I forget.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

Asterix
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Location: Brisbane, Australia

Re: Clinical Trial - Round #3

Postby Asterix » Fri Nov 21, 2014 8:00 am

Thank you Belle for your updates. I do hope you get good results from this drug.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

lorrainem
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Re: Clinical Trial - Round #3

Postby lorrainem » Fri Nov 21, 2014 10:09 am

Glad this round is over; and with CEA going down, glad results at least make the big house confinement and resulting ugliness worth it. I'm thanking you also for this, but most of all I love your fight!
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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trapbear
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Re: Clinical Trial - Round #3

Postby trapbear » Fri Nov 21, 2014 11:42 am

Belle,
Thank you for the updates, so sorry you are having so much nausea with this new drug. Hang in there, I hope your numbers keep on dropping.
Hugs,
Bill
Husband Dx with Stage 3 CC in Dec 07
Xelox Jan-July 08
Lung mets Jan 09
Folfiri plus Avastin Mar-May 10
5FU plus Avastin May 10-current
2 liver mets March 13, continue 5 FU & Avastin
liver RFA Oct 13, hospice June 14, at peace Sept 2, 2014


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