new member (stage 4)

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fme1956
Posts: 1
Joined: Thu Apr 13, 2017 10:12 pm

new member (stage 4)

Postby fme1956 » Thu Sep 07, 2017 5:03 pm

HI,

Just wanted to share a snapshot of my medical journey with Stage IV Colon CA with liver mets and now we are seeing something in my lungs; maybe others are experiencing some of the same? My main side effects from meds so far, which have been bearable, include constipation, some blood in stools, very dry skin, hair loss over time, and neuropathy. Oh yes and a little bone pain from Neulasta...not constant. Thanks to the good Lord!

4/16-Diagnosed with Sigmoid CC/Stage 4 --Oncology says chemo NOW to shrink (~10+ liver) tumors vs remove the main tumor in the sigmoid which would set me back ~6 weeks for needed chemo
4/16-6/16-Insurance Issues--go-figure--almost 2 mos. late to start my treatments!
6/16- Started on FOLFOX, Avastin, Oxaliplatin x18 treatments-Oxaliplatin stopped at ~8 txs due to neuropathy in fingers and feet
11/16- Night and Day on PET Scan and CT-tumors shrank ~no new tumor, however, what I have is unresectable due to so many and no clear margins??s
12/16--PET/CT-Mets improved :) YAY!
2/17--PET/CT-Mets progression :cry:
3/17- New 2nd line Chemo-FOLFIRI + Erbitux; very dry skin, small nose bleeds, some blood in stools from dry skin in anal area;
5/17-PET/CT-increase in pulmonary nodules now
:cry:
7/17-Erbitux stopped due to severe facial rash grade 3
8/17-Significant progression of liver mets volume--back to Initial Chemotherapy :cry: :evil: (was it something I ate?? also took Prednisone and ABX for grade 3 Erbitux for several days)
WHAT ELSE CAN I DO? DR. SAYS I WOULD GET REALLY SICK IF I HAD RADIATION OR OTHER MODALITIES. ( I am ok with my quality of life now) ONLY ONE MORE RX IF THIS DOESN'T KEEP HELPING-PILLS MAINLY AT HOME. Still tweaking my diet though I have indulged here and there with sweets and starches.
12/15-Off the Initial Therapy; Chemo Break; tumors are larger in the liver and now 2 in lung larger; may start Stivarga this month 1/8
Last edited by fme1956 on Sat Jan 20, 2018 12:36 pm, edited 2 times in total.

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: new member (stage 4)

Postby Mercy110 » Thu Sep 07, 2017 9:02 pm

Hello. I am Mercy from Hong Kong. My mum is a stage4 patient as well. There are multiple lung nodules in her lungs that is told to be inoperable. She is going to receive chemo (Folfox with Avastin) tmr for the first time. We are so worried abt her. I have receive lots of advice in this forum. It seems that most of the NED stage 4 patients can undergo surgery. Also, my mum has NRAS mutation which made the use of drugs more difficult. Temporarily she looks well and still able to do housework, but the disease is in her. There are members here in forum mentioned Laser surgery of lungs in Germany but we cannot afford it...
I will pray for you all and my mum.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: new member (stage 4)

Postby rp1954 » Fri Sep 08, 2017 2:15 am

Realistically, trying to resensitize your cancer to xeloda and improving your quality of life on chemo are the options that they are leaving open if none of the newest stuff is an option or an available trial. Basically, what some of us do, is to treat one doctor as a source for (daily) chemo pills and add onto to that, other recommended treatments from other doctors.

Some things help the body and the immune system, some help kill or reduce the activity of cancer cells, some may help reduce metastasis. Ideally all are achieved for a long time.

We used these blood tests to decide what doctors and questions to ask:
Common lab tests with CRC that you should have, CEA, SGOT, ALP, Hgb, WBC (neutrophils, lymphocytes, monocytes), platelets; your highest and lowest MCV from the CBC
Commonly available tests CA19-9, AFP, LDH, 25-hydroxy vitamin D, ESR, hsCRP, PT/INR, quantitative d-dimer. Some you may already have but people often order them themselves if the dr or insurer balks them.

Earlier discussions linked, and testing
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: new member (stage 4)

Postby WarriorSpouse » Fri Sep 08, 2017 9:19 am

Sorry to hear why you are joining the forum... you are not alone and many here have walked in your same path several years ahead of you. As a new member, you can use the search tools to see historical answers to many of the same questions that many had year prior. It is very helpful to read about similar questions and problems, and to see people's advice for establishing a new normal of treatment, surveillance, and life in general.

Many on this board, and I agree, advise to seek out second opinions from a major cancer center like Dana Farber (Boston), MD Anderson (Houston), Sloan Kettering (NYC) to see what those doctors have to say... You can always elect to do your treatments locally, but having a big center's eyes on your issues can be a helpful way of making a decent plan that can be followed and implemented with today's current knowledge and practices. Use the search tool under quick links to see conversations about this topic.

We are here for you and wish you a speedy recovery and an excellent action plan to move forward... Keep moving forward on your plan and do not let anyone slow you down in the process.

Good luck and keep us posted!
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot


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