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[mariane]

Hi! I am 40 years old mom of twins. I am Polish sharing my time between Poland and the States. I had hardly any symptoms, a trace of blood with mucous. I had abdominal pain for 12 years due to stage 4 endometriosis (inherited from my mom). I learnt to live with constant gut pain and ignored it. My dad was diagnosed with stage 2 crc at 74. His cancer was huge, caused obstruction but did not metastasized. He is almost 5 years after his surgery and Xeloda only chemo, NED. I planned to get colonoscopy at 40. It was too late for me. My colonoscopy was scheduled on our 10th wedding anniversary. We planned to celebrate after. Life is so unpredictable.... I got CT scan which showed suspected 3 lesions on my liver. MMR a week later confirmed metastases - there were 7, one 6cm on left lobe and small subcentimeter ones on my right lobe, 7/8 segments + caudate. Since my primary was small Polish oncologists decided to remove primary first. It got resected on July 13th, I did not get colostomy. I walked on second day after surgery and refused pain killers on 3d day. I was adapted to pain sometimes severe because of endometriosis. 4 out of 15 LN tested positive. I got discharged from the hospital 5 days after my surgery and sent my tumor to CARIS for genetic testing. Results were negative for most mutations. Learning about Dr Kemeny and her success rate dealing with hepatic pump I decided to send her my medical records and got appointment on August 3d. She was surprisingly compassionate and warm and promised to fight for me. First CT scan at Sloan showed 10+ liver mets. One of my tumors now 3cm, abutting vena cava inferior. My CEA rose from 46 in late June to 146 at Sloan. Dr Kemeny put me on FOLFIRINOX without biologicals to check my response on chemo. After 3 rounds of chemo I was scheduled for follow up scans. Luckily my response was good, tumors shrunk, looked dead (?!!!) already, CEA down to 20, LDH down to 140 from 370. I am supposed to take one more round of chemo then get HAI pump implanted on October 13th . My surgeon will be Dr D'Angelica. I had consultation with him yesterday. Dr D'Angelica wants to shrink awful mets even more with 3-4 rounds of HAI chemo prior to the surgery. He plans to place HAI pump and maybe get the small caudate met at the same time. I still cannot recover from the shock of my diagnosis. I can sleep most nights now. I pray to God to let me stay here with my babies.
I have many questions. How was the HAI pump surgery? Did you recover quickly? How did it look like? Any suggestions of cheap hotels for my husband ? How was liver surgery itself? I try to be aggressive with my treatment. I also walk 6 miles almost every day even with 5FU pump.
Any suggestions for diet , supplements? Is Curcumin interrfering with Irinotecan? Should I take Cimetidine? My CA 19.9 was 29 in July. I received it in hospital in Poland during my primary resection. I avoid any meat. I have not tasted red meat since my colonoscopy, no sweets, no sugar. I slowly introduce back again more vegetables after colon surgery during chemo. I was always health nut, never drunk, never smoked, exercised, ate healthy, lots of fruits and vegetables, cooked home-made food, baked own rye or spelt bread. I just hate this awful disease. I probably can blame my genes but come on.... my dad was 74....smoked for years, obese, had serious symptoms for 2 years prior diagnosis, his tumor caused blockage but did not went through gut wall... My poor dad is crying now that he would like to die instead of me... I am an only child because of my mom's endometriosis. My both parents are healthy in their late 70ties, healthier than in their past. It is such an irony to be diagnose with preventable cancer at 40.
I TRY to hope for the best. Prayer helps me to fall asleep. Without faith I would go mad.

[Willow.NZ]

Hi, welcome to the forum - sorry you have to be here. I cannot offer personal experience but you have come to the right place to connect with many kind ppl fighting the battle. I am sure ppl here will be able to give you so much information and first hand info - but from me just hugs and and thoughts for what you are going through right now xx hopefully after hearing other positive outcomes you will have a renewed sense of hope.

[jhocno197]

I'm sorry you have to be here.

I think it would be a good thing to take cimetidine. Also, I was given advice about supplements here: viewtopic.php?f=1&t=51774&hilit=Resveratrol

[Nik Colon]

Welcome again (I believe I replied to another thread you were on) So sorry to hear. I have a link in my sig about my tx but it may be hard to weed through so I will find the posts just about my surgery and post it below.

Here is a post I found from my colon/liver surgery. Fyi, you can get an epidural (I did ask about but they said would be overkill for me, maybe the risks, idk), I got pain block shots and couldn't get one by liver cuz too close to lungs so I had more pain there:

So, omg, right after was HORRIBLE! I can finally breath better and so the pain isn't as bad. Still hurts but no where near what it did. Got sent home with oxy. Tylenol for 10 days. Ibuprofen also for 10 days, and lovenox to prevent blood clots which I have to inject once a day for a month.

They removed 12 inches of my colon and said the seal seemed to be airtight, and no ostomy!

I have 5 incisions total, the top one witch is the biggest is for my liver, they did the pain block but were unable to do it in that area as they said it would stop my breathing, so that is why there was so much pain. I was freaking out since it hurt so bad and could not take deep breaths on top of my anxiety issues it made it feel as if i was going to pass out. I almost wanted to ask them just to knock me out again! I can deal with alot of pain but not the breathing thing. Finally after MANY different drugs it finally helped and calmed me down enough to be able to tolerate it. Just AWFUL and SCARY!

As you can see above the meds I got sent home with. I have been really trying to walk, stretch, do my breathing exercises and anything else i can to hopefully help me heal faster. I cant wait to get back to somewhat normal. I have 2 months to celebrate somewhat before my chemo starts again. I am HOPING no more cancer shows after this!

I guess its once again a wait and see situation. The docs said everything went great so that sounds good.

[Maggie Nell]

As a adult who was an only child, I hope that there might be extended family,reliable friends & good neighbours in your primary place of
residence who can provide practical assistance with the every day concerns.

There are many in this forum who draw fortitude from their faith
viewtopic.php?f=1&t=34370&p=237480&hilit=prayers+faith#p237480

The link below is for folks who request prayers
viewtopic.php?f=1&t=11381&hilit=prayers+faith&start=525

Speaking only for myself, if I had young children, I'd be praying to Our Lady of Częstochowa for loads more time to
stay with my kids. I just figure a mother would understand the deal better.

[rp1954]

You might want to check your serum 25-OH vitamin D level. So many here have had gross vitamin D deficiency even in subtropical areas, and required 5,000-15,000 iu vitamin D3 per day to get good blood levels. We take vitamin D3 along with human preferred vitamin K2, menaquinone-4. Not sure if you've already ready discovered the Life Extension articles about supplements for colon cancer and surgery.

[CLD]

Welcome to the forum. To add to Maggie Nell's comment about Our Lady of Czestachowa, St. John Paul II is a colon cancer survivor! I found this out after an online search for colon cancer survivors. I hope it gives you hope!

[Deb m]

Sorry to hear of your DX. I cried my heart out to Our Lady of Sorrows and united my grief and sorrows with hers and begged her to help my husband and I through everything. I would not of made it through without prayer and faith.

I will be praying for you!

I think you made an excellent choice of oncologist/hospital in New York. They do great things there.

deb m

[Maggie Nell]

Any suggestions of cheap hotels for my husband ?

I don't live in the States, but I reckon there are folks here who do know where he can
bunk down.

[jalusa]

There is nothing really "cheap" anywhere near Sloan. I think Pod 51 is probably the lowest. Sloan does have some negotiated rates at a few hotels and apartments.

https://www.mskcc.org/locations/visitin ... mmodations

I am hoping to have surgery yet this winter. I am going to look at the apartments listed in the link above.

[mariane]

Thank you for all the answers and suggestions! Sorry for my imperfect English. It is my second language , learnt when I was an adult.
I have never checked my Vitamin D level. Good point. I will talk about it with my local oncologist.

Tagamet (cimetidine) is a prescription med, am I correct? I need to mention it as well.
I am always concern about interactions between supplements and intensive chemo meds. FOLFIRINOX is pretty strong chemo.

I am Catholic and I pray to Our Lady of Czestochowa. I pray to Her as a fellow mother. My husband and I even went to Her shrine after my diagnosis. I also possess relics of Saint John Paul and Saint Charbel Maklouf. I received them after my diagnosis from my relative who is a catholic bishop and was a friend of Saint John Paul. They worked together as young priests in catholic university in Lublin. I hold these relics and pray during my all scans at MSK. Suprisingy all my surgeries until now were scheduled on Our Lady of Fatima days, (the 13th). I consider it a sign. When I met Dr D'A we joked that Saint Michael the Archangel will do my liver surgery so it cannot go wrong.

Last year I prayed to God to show me where should I finally settle down. This cancer pushed me to make a final decision. I will not go too far away from MSK and brilliant Dr K during next 10 years if I survive. It means Atlanta will be my permanent home. My kids have just started Kindergarten.

I feel well, now. I am energetic even on FOLFIRINOX and do not need much help. The only problem is taking care of our kids while we leave to NY for appointments/treatments. My friends here help me to solve this problem.
My aging parents in Europe are and always were, always will be my other concern but at this point I am not able to help them. They are luckily independent. My dad is still working at 78. He loves his job as a vet.

Talking about Dr K I saw a very human face of her. She dedicated me quite some time. When I asked her whether she will leave my treatment to somebody else if she finds mets outside my liver she took my hand, and said that she will fight for me and will never leave me. The tiger mother wiped her eyes quickly and run away.... I was deeply touched. She chose local oncologist for me and often calls him to learn how my chemo goes. She is not tolerating any delays. I see a hand of God that Dr K even took me and gave me appointment ASAP, the soonest from all cancer centers we contacted. She was my first choice after I red all her available research papers and saw her stats.

[mariane]

Nik Colon, the pain after liver surgery sounds scary.... Anyway I have no choice.

[jalusa]

Mariane, we seem to be on similar paths. Best of luck to you. Jim

[mariane]

Best luck to you as well, Jim!
It is not an easy road but we can do it!
My next goal is to survive the HAI pump placement I am still relieved I responded well on chemo. Scanxiety was killing me. I imagined the worst: extra hepatic disease, growth of my mets, my poor, little liver failing from mets and chemo, thousands of worst case scenarios. It is not good to know to much....

[JDinNC]

Though I understand that Tagamet is a control substance in most European countries. Tagamet is an over the counter medicine in the US. Just an FYI...

For those who have visited MSK...what are the chances of finding reasonable housing in N.J. OR is to too far to travel ???