Stage 4 Rectal Cancer 45yo Wonderful Woman

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Carolinahusker
Posts: 3
Joined: Fri May 21, 2021 5:11 pm

Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Tue Jun 01, 2021 12:32 pm

Hey guys. The strength, knowledge, and support you display is amazing. I need some of that. Your comments, suggestions, and ideas are welcome.

My wonderful, forty-five year old wife was recently diagnosed with stage 4 rectal cancer. We have four children (23yo daughter, 17yo son, 13 yo daughter, and 10yo daughter). She had been having bowel issues for a few years (more?), but just assumed it was IBS and hemorrhoids which she could fix if she just found the right diet. On April 22nd we learned that diet would not fix this. Here are the notes I've taken since that day. I'll work to put an appropriate signature block together soon.

22 April 2021 – My wife discovered a mass on the right side of her abdomen below her rib cage. It was after-hours and, after discussing with the triage nurse, we decided to head to the emergency room. My 23-year-old daughter had tested positive for COVID, so I was unable to go into the emergency room with my wife. After hours of waiting a CT scan ultimately showed a “Large heterogeneous low attenuating mass within the right hepatic lobe measuring 6.5 x 8.8 x 11 cm. Multiple peripheral contiguous lesions suspicious for a confluent mass. Findings are worrisome for malignancy. Metastatic or hepatic primary.” This was bad news, but the ER doctor reassured us that if it was cancer it did not appear to have spread which was good news.

23 April 2021 – Want to schedule follow-up visits, (MRI, Labs, Liver Biopsy) but have to schedule everything a couple weeks out due to COVID quarantine.

25 April 2021 – Our three other children (17, 13, 10) and I come down with COVID. My wife is still good.

26 April 2021 – My wife has a Zoom call with an oncologist. I miss it because I had what I thought was an important meeting. That was a mistake. The oncologist tells her that he thinks she has cancer, but needs to perform more tests.

29 April 2021 – My wife comes down with COVID. Quarantine clock resets. We have to reschedule appointments.

13 May 2021 – Another ER visit. My wife is nauseous and vomiting. She can’t keep food or water down. It is 10pm. My oldest daughter and I struggle to get my wife dressed. It was not pretty. Later my wife would joke, “You guys had me dressed like a hobo!”. At the ER, I am able to stay with her this time since my COVID isolation time was over. My wife is a “hard tick” so after a few sticks the nurse gets an IV in her and starts some anti-nausea medicine. She later throws up. Nurse switches out the anti-nausea medicine. My wife feels better. Another CT scan. ER doc says the mass has grown “a little bit”. Mass now measures 11 x 7 x 12cm. WTF. That seems like a lot to me. After discussion with the doctor, we decide she doesn’t need to be admitted. We head home with a couple prescriptions for ant-nausea medicine. Once we get home, she begins feeling nauseous again, but she doesn’t want to go back to the hospital. I head out at 3am to get her prescriptions filled. I had not known that there are 24-hour pharmacies. That’s cool. When I get back, she is already feeling better and resting.

14 May 2021 – MRI. The MRI folks, unapologetically, start two hours late, but otherwise uneventful.

17 May 2021 – Lab work. It takes a couple sticks, but they draw the blood. The following components were highlighted:
PLT 442 KuL High
MCHC 31.5 g/dL Low
CEA 253.5 ng/mL High
Glucose 107 mg/dL High
AST/SGOT 151 IU/L High
A/G ration 0.83 Ratio Low
Ferritin 132.8 ng/mL High
Hepatitis B surface ab, quant <5 mIU/mL Low
Iron, % saturation 11% (calc) Low
Iron, total 32 mcg/dL Low

18 May 2021 – Another Zoom call with the oncologist. He explains that changes in CEA can indicate cancer growth…or not. Hers is 235. He also says that closer looks at the scans indicate a mass in her rectum and that he believes she has stage IV rectal cancer. That’s bad news. I don’t think I can deny it anymore.

20 May 2021 – Liver Biopsy. Fasting. Another couple sticks.

21 May 2021 – Colonoscopy. More fasting. She really struggled to get the prep down the night before. It is the worst tasting thing she has ever had in her opinion. Colonoscopy confirms rectal cancer. Doctor struggled to get the probe through tumor area to look at the rest of the colon, but was able. Almost a compete blockage. Colonoscopy doctor is going to recommend surgery.

25 May 2021 – Consult with the Surgeon. Surgeon decides not to perform surgery, yet. He wants to give the chemo a chance to reduce the tumor size. I initially was disappointed, because I know her struggles to eat and eliminate that which she eats. However, long term, this is better. Delaying the chemo would just allow the tumors to continue to grow and spread.

25 May 2021 – Dance Recital. Despite her weakened state, my wife performs in her ballet dance recital and performs beautifully.

26 May 2021 – Appointment with the Oncologist. Confirms stage 4 rectal cancer. Plan is to start her on FOLFOX for 2-3 months and see how her body reacts. Wants to put her on Avastin as well, but will hold off initially due to the possibility of emergency surgery due to the obstructing tumor. Is also performing genetic testing.

27 May 2021 – CT Scan of Lungs. Another couple sticks. Need to perform another MRI, but unable to schedule to recent colonoscopy.

28 May 2021 – Port Surgery. More fasting. Nurse decides to call the PICC team to insert the IV. Yay! Using the ultrasound results in her only being stuck one time. Operating room running behind schedule. Surgery starts three hours late.

1 Jun 2021 – Chemo training with the nurse. She is still struggling to eat. If she is taking in enough calories to maintain her weight, it is just barely. She was 115lbs a few months ago. Now around 103lbs.

2 Jun 2021 – First Chemo.
Last edited by Carolinahusker on Tue Jun 01, 2021 6:49 pm, edited 1 time in total.

boxhill
Posts: 719
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby boxhill » Tue Jun 01, 2021 6:03 pm

Oh my, you folks have had a tough time--especially her, of course.

I'm glad to hear that they are doing genetic testing immediately. That can make a definite difference in her treatment. I am hoping against hope that her tumor is MSI-H, because she could then proceed directly to immunotherapy. Statistically unlikely, but it does happen. There is another poster here whose brother was recently diagnosed with MSI rectal cancer, and he's on immunotherapy rather than chemo+radiation.

She will need to discuss the nausea situation with her oncologist, and make sure that they are going full-out on anti-nausea premeds from the very start of her infusions, not waiting until they see as some practices seem to do. Ideally, she will get a combination of shorter and longer-acting premeds, as well as a small arsenal of prescription drugs for her to use as needed at home. (Such as Ondansetron.) She may also need a gentle stool softener and laxative, given the location of the blockage. Generic versions of OTC drugs like Senokot and Colace what I was given to take home after a hemicolectomy.

We tend to feel better once there is a plan of action. I hope she does too.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

User avatar
ginabeewell
Posts: 500
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby ginabeewell » Tue Jun 01, 2021 9:22 pm

Wise words from Boxhill, not much more to add at this point, but a few questions:

Has anyone spoken to your wife about putting in a port? It makes chemo and any blood test SO much easier. I know some do chemo thru veins, but if she’s starting as a hard stick, that will only get harder.

With a stage 4 diagnosis, you’ll want to get a second opinion at a major cancer center. And you’ll want to make sure you are working with a doctor who is treating with curative intent; not all oncologists are great about this - I interviewed four before finding mine.

Finally, when weight was a struggle for me, my surgeon told me not to drink anything without calories. I drank a ton of whole milk, sometimes with chocolate or malt powder. And it’s still a go to for me on days I can’t get much else down. I also made my own yogurt using a mix of whole milk and heavy cream.

Best of luck to you, your wife’s situation (if not her case) sounds a lot like mine. My husband really likes the caretaker section of the Colon Club on Facebook for support, etc.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

Carolinahusker
Posts: 3
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Wed Jun 02, 2021 7:48 pm

boxhill,

You're right, it has been tough. We do feel better that there is a plan. It is all still overwhelming, but at least she can focus on executing the plan rather than feeling like everyday that goes by (without treatment) is wasted.

I think the oncologist is on point concerning the nausea. My wife's first chemo session was today. She received palonesetron (+ dexamet) and fosaprepitant via IV prior to receiving the chemo drugs. She also has a prescription for ondansetron and prochlorperazine. I think she is supposed to take the ondansetron at night and in the morning and the prochlorperazine if needed. So far, so good. She actually felt hungrier today than she has in a while.

You're right about the potential need for a stool softener/laxative as well. She tried Mirilax the day of her colonoscopy, but threw that up. Since then, she has been drinking kefir which I think helps with that.

Fingers crossed for MSI-H!

Carolinahusker
Posts: 3
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Wed Jun 02, 2021 8:08 pm

ginabeewell,

She has a port. She used lidocaine an hour prior to her chemo appointment and everything went quite smooth.

I'm not quite sure how to go about getting a second opinion. I know that MDA and MSK are a couple of the major cancer centers. What should I get a second opinion on? The diagnosis is pretty straightforward. Would the second opinion be on the treatment plan? Do I let our oncologist know our intent to get a second opinion and then just reach out to the cancer center (assuming they take our insurance (TRICARE-West))? I'll ensure that the intent is curative.

I'm encouraging my wife to follow the advice to always drink beverages with calories.

I read a lot of your comments. Your case/situation encouraged me that there is hope.

User avatar
ginabeewell
Posts: 500
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby ginabeewell » Thu Jun 03, 2021 1:01 am

Carolinahusker wrote:
I'm not quite sure how to go about getting a second opinion. I know that MDA and MSK are a couple of the major cancer centers. What should I get a second opinion on? The diagnosis is pretty straightforward. Would the second opinion be on the treatment plan? Do I let our oncologist know our intent to get a second opinion and then just reach out to the cancer center (assuming they take our insurance (TRICARE-West))? I'll ensure that the intent is curative.


Here is a link to the national cancer centers.
https://www.cancer.gov/research/infrast ... nters/find

It’s very common for stage 4 patients to get a second opinion, your oncologist would likely expect it (and if you get any resistance, I would suggest you may not have the right “team lead”). The center may want to confirm diagnosis, but the real question is whether they would approach treatment differently. I might first select the NCI center; call them and see what records they need, and they will guide you thru how to request files, etc.

If your wife has activity in the liver, I think I would at least investigate whether an HAI pump could be indicated; it tends to work better when you begin with it, but I think only MSK and City of Hope in LA have true expertise. MSK has been willing to work with my Northwestern team to treat me so I didn’t have to fly to NY every two weeks; guessing City of Hope may do likewise. If you are not working with one of these two places, take any advice regarding the pump with a grain of salt. Doctors are human who tend to reco what they know. Let MSK or City of Hope make that call.

I might also ask why Avastin vs Vectibix. I’m not as familiar with rectal cancer specifically so that may be why; but I also know some docs don’t prescribe the latter to younger patients because the rash is a pretty horrific side effect. But I THINK I have figured out that icing during infusion makes a huge difference, and at least in my case, it was proven clinically better than Avastin. Thru various combos of drugs, it seems to be the magic ticket for me. So worth asking.

Finally, I loved the book Radical Remission and am so glad I read it shortly after diagnosis - it truly set the tone for my whole journey and gave some helpful guidance about how to approach. Mostly it made me hopeful! Between that and a very skilled therapist, I can honestly say that cancer is maybe the best thing that ever happened to me. You know, so long as I don’t die and mess things up. ; )

Best to you and here when you have more questions!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

boxhill
Posts: 719
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby boxhill » Sat Jun 05, 2021 4:19 pm

She might have a KRAS mutation, which would eliminate Vectibix and the other EFGR pathway drug...I'm blanking on the name. Since they most likely don't know yet, maybe just trying avastin in the meantime?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

User avatar
ginabeewell
Posts: 500
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby ginabeewell » Sat Jun 05, 2021 4:42 pm

boxhill wrote:She might have a KRAS mutation, which would eliminate Vectibix and the other EFGR pathway drug...I'm blanking on the name. Since they most likely don't know yet, maybe just trying avastin in the meantime?


That could very well be, I feel like that was something one of the first oncs we visited talked about before my testing came back. But both Vectibix and Erbitux are powerful drugs, even if they come with pretty awful side effects, so definitely worth asking the question.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

stu
Posts: 1491
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby stu » Sun Jun 06, 2021 3:07 am

Just want to say I think you have come up to speed very quickly and got a grasp of the benefits of going to chemo first !
You can read my mum’s story in my signature but your wife sounds pretty courageous doing her recital . She has a bit of inner strength there !
Hoping for significant shrinkage for her with her treatment.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

saltygirl
Posts: 17
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby saltygirl » Sun Jun 06, 2021 2:30 pm

I am 45 years old as well. Kids 19 and 17. Please try to encourage your wife to still live her life to the fullest when she feels better. She will have bad days and relatively “good days” during treatment. I was on folfoxiri / was given a choice of Folfox vs folfoxiri. Choose folfoxiri. But still managed to have some fun with my kids. It helped me a lot mentally. Went skiing, water rafting, hiking, Disney World, trip to California covid style etc. Celebrate the “good days”. Wishing your family best luck.

mariane
Posts: 690
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby mariane » Fri Jun 18, 2021 9:10 pm

Hi!
I also would encourage you to try the HAI pump path. I would also to FOLFOXIRI as first choice chemo. It's a strong coctail but strong first chemo matters on the way to NED.
I was on similar situation 6 years ago. I received FOLFIRINOX/FOLFOXIRI as first chemo and 4 surgeries later I became NED. I have been NED for over 5 years, now starting with 10+ big fat tumors. I was also skinny from chemo and cancer.
I live in metro Atlanta. Your nick suggests Carolina. Piedmont Cancer Center oncologist - Dr. Shams cooperates closely with MSKCC and shares many patients with them , now. I was one of them until my pump removal.
I knew a patient from Charlotte who received most of the treatments there under Dr. Kemeny's supervision.
I think MSKCC is the place to go with liver mets. On my long cancer path I met patients who switched from MD ANderson and from Mayo to MSKCC with success.
Good luck!
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 690
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby mariane » Fri Jun 18, 2021 9:15 pm

I would also suggest NutriDrinks and long walks. Dr. Kemeny usually encourages being active. I walked with chemo pump attached. It helped to survive long, exhausting chemo time.

By the way I am 46, now. 40 at diagnosis exactly 6 years ago, today on my 10th wedding anniversary. Today is my 16 wedding anniversary. :)
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!


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