Husband Recently Diagnosed Stage IV-Looking for hope, also questions about Raltitrexid

[Elenitsa]

Hi All,
I have been reading all of your fantastic posts and there is such a wealth of support and information its so encouraging. My husband was recently diagnosed (Nov 2016) at 37 years old with Stage IV CRC with Mets to Liver and Peritoneum. We have had 3 opinions as we werent crazy about the initial Oncologist, who basically just said he's gonna die and not to bother changing his diet/lifestyle etc. We didnt agree with his philosophy and sought a second opinion. DH is an extremely healthy, fit young man with no other existing conditions so you can imagine this blindsided us, just as we were about to start trying for a second child (We are parents to a sweet 3 yr old daughter.)The second Oncologist said there could be a possibility of remission and the third who was a Radiological Oncologist said he could go on to live a very long life without the cancer progressing. He started on Chemo (Irinotecan, Avastin and 5-Fluoracil) Dec 1st and immediatly had a terrible reaction to the Fluoracil. We tried 2 more times but he was hospitalized for chest pains/spasms which apparently is a known but rare side effect. So we had him switched to Raltirexid with Irinotecan and after a long fight with Insurance got Avastin added back in. So far he has done very well with only minor aches and constipation and muscle twitches. No nausea or diarrhea, good appetite, in fact since starting his first round of chemo his appetite came back, his stomach pains went away, as did the blood in his stool.We have drastically changed his diet, no red meat (Pork or Beef) No Cow Dairy, No White or Processed foods and tons of green vegetables, fruits, berries, and lots of Organic Lean Protein as well as i make him daily green smoothies. They said the primary tumor isnt much of an issue as its only 1 and quite small, the issue is the lesions on the liver. They said in time with chemo and radiation resection may be possible.

Sorry for the long explanation, Just some questions, do any of you know anyone using Raltitrexid as it seems quite uncommon as most people can tolerate the 5-Fluoracil, did they respond well to the Raltitrexid? Do you agree the diet/lifestyle changes help and have any suggestions? As everyone else here im looking for some sort of hope that he can survive and live a long life with me. We are in our early thirties and have been together almost 14 years, i cannot imagine a life without him and will do anything in my power to help. Any tips/advice/hope would certainly be welcome.

Thank you so much for listening <3 And Happy Valentines Day to you all!

[mtipte]

Sorry to hear that. I am a caregiver too. I woukd advise you to read as much as possible. Im also new to this forum, but I have seen in the members' signature that stage 4 people live longer than doctors say. Every person is different and from what I have read diet affect the outcome in a positive way. Antioxidants and immuniny boosters fight against cancer cells.

I will be praying for both of you.

Regards.

Mario

[Maia]

Hello, sorry you have to been here.

Raltitrexid (Tomudex) is a very good alternative for those who have DPD deficiency (the reason he can't tolerate the 5-FU). Old drug, well known. I think you won't find here people using it because the only reason is not FDA approved, so it's not avaiable in USA. Are you in Canada, Europe, China...? It Is a great agent in many clinical trials for treatment of liver CRC metastases, in combinations, but most trials are ongoing in China.
https://clinicaltrials.gov/ct2/show/NCT03053167
https://clinicaltrials.gov/ct2/show/NCT02618356
https://clinicaltrials.gov/ct2/show/NCT02557490
https://clinicaltrials.gov/ct2/show/NCT01348412 (France)

Where are you located? What cancer centres do you have access?

[recruiter]

To quote my oncologist, and I am Stage IV as well, "I have no idea how long you'll live. Only God knows how your story ends, and perhaps He is the reason we are working together to fight this thing."

[stu]

And over here in Scotland is my stage 4 mother who was given a similar prognosis. It will be eight years in the summer.
Wishing you and your husband all the very best.
Kind regards,
Sti

[SEWHAPPY]

Just wanted to welcome you to this forum. There are those more experienced with specifics on the meds. But I do send prayers, hugs and courage! Laurie

[mymom]

My mother was diagnosed in May 2011 stage IV and today she is NED. She has had several reoccurrances and a hard road. She is 70. She went to Dave and Busters arcade with my three high energy kids this past Friday and proceeded to ride a 'motorcycle' video game. This coming Sunday she is modeling in a bridal/formal gown show. There is always hope.

[CrossfitChick1980]

My husband is Stage IV, was diagnosed in 2014 and we are still fighting. Right now, he is technically NED but has maintenance chemo every 2 weeks due to his cancer mutation. Only God knows when he will no longer be on the earth so we enjoy our life to the best of our ability!

[LPL]

Hi Elenitsa,
Sorry you need to be here but Welcome to a great place for getting advice from people with a lot of experience. I do not have much knowledge and our, my hubby's, situation is different then yours because of age difference.
But I need to say.. Your 1st Oncologist sounds SO BAD !!! That you had the strength to look for a 2nd & 3rd opinion shows that you are a Strong couple and I wish you all the best going forward !
You said "the primary tumor isnt much of an issue as its only 1 and quite small, the issue is the lesions on the liver". My hubby also had lesions on the liver. See my signature. He had 4 chemo before his liver surgery (and 8 chemo after). We are optimistic, he is feeling good, next is a follow up CT-Scan at the end of March. We belive our surgeon had good skills. Do you have a good liver Surgeon on your team? My hubby also had good apetite during chemo - that is a blessing I belive. He has had 3 surgeries and an apetite/need for a lot of protein to heal.
Best of luck going forward and if you, as a caregiver, ever feel the need to talk to others in the same boat.. there is this thread viewtopic.php?f=1&t=18704
Kind Regards /LPL

[Elenitsa]

So sorry its taken me so long to read all of your wonderful messages, I was swamped with work, caregiving and of course running after my little one I just wanted to take the time to say a big thank you to everyone for your replies, prayers and well wishes. To the questions I have gotten we are living in Ontario, Canada and thankfully my company has wonderful benefits to cover the Raltitrexid. I agree about our first oncologist, i understand he must be very busy but i feel its inexcusable to have no communication whatsoever with us, and we are constantly seeking other options and opinions. We have not met with a surgeon as no one has discussed the option of surgery with us, likely due to the extent of the spread on his stomach and liver. Im hopeful of course, and love to hear what some of you have said about long-term survival with personal cases. I really appreciate each of you taking the time to write back. We are hoping to have our first scan soon, not really sure what to expect. I will keep you posted

XOXO