New here...feeling hopeless and sad about my father

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Sugar
Posts: 5
Joined: Sat Jun 16, 2018 1:13 pm

New here...feeling hopeless and sad about my father

Postby Sugar » Thu Aug 16, 2018 10:12 pm

I have been lurking on the boards for a few months now, but finally feel the need to reach out. My dad was diagnosed with stage IV colon cancer on 6/6/18, and began Folfox+Avastin treatments 6/11/18. He lives in a very small, rural town which has one oncologist who works at their hospital. From the beginning, this doctor told my father that he could choose to try chemo, or do nothing. My dad (who is a young 77) chose the chemo. I encouraged him to seek a 2nd opinion at MDA, and we are here right now. The oncologist that met with us today, told my father he should stop all treatment because his health is continuing to decline (weight loss, loss of appetite, fatigue). Even though some physical symptoms have resolved (ascites), the fact that my father doesn’t “rebound” from the side effects (stated above) means either the cancer is still spreading or the chemo is too toxic for body. Regardless of which one, his health is continuing to decline. He said at this rate that doing nothing may give him 4-6 months, versus maybe 9-12 months with the chemo. My dad asked about restarting the chemo if during this chemo break his symptoms improved. The doctor said we are still looking at a short term survival, and not years like we were hoping for. We are numb...not from the known reality of this awful disease, but from the starkness of his words. I know many of you here have been in situations like this, or worse. How did you handle this type of news, or even begin to process it? This really sucks :-(

K

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: New here...feeling hopeless and sad about my father

Postby AppleTree » Fri Aug 17, 2018 4:30 am

I am sorry to hear about your Dad. But, it seems to me, without at least a new CT scan - the new oncologist is flying blind.

I think that if it were me, I would personally want to know if any of the chemo did work.

When I was on Folfox, my sister begged me to stop at 8. I kept going. At 11 she insisted I had enough. I went for the 12. My next PET was clear. I dropped down from 150 to 104 at my lightest. Currently fluctuating between 106-107 and I stopped chemo in April. I am still extremely tired and have digestive issues.

One of my sisters battled cancer right along side of me. Sometimes we got chairs together. She passed the end of June. I really think she was holding out to see her youngest graduate high school. So, it is different for everyone. Even with the same DNA.

Have a frank talk with the DR about pain management, especially if it has spread to the bones. They inserted a morphine pump into my sister while she was strong enough for a surgery. It delivered the morphine, through an automatic pump straight to her spine. It was her fastest acting pain medicine. She also was able to equip a little room in her house with the hospital bed and everything ahead of time. The whole thing was terribly sad, but practical.

If he wants your help to get his affairs in order, offer him rides to the lawyer, etc. My main concern was guardianship of my teenaged son. But there are also electronic bank statements and bills that maybe no one knows about and computer passwords...especially if it is an Apple device. If this is too difficult to talk about, there are books about final wishes that covers everything down to the ceremony, music, gravesite, etc. I have one of these books. And my teenage son knows all my passwords.

I am sorry. But now is the time to discuss these things so they are not hanging over your head...if your Dad can talk about it yet. There are also very good hospice councillors, or turn to your religious leader.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: New here...feeling hopeless and sad about my father

Postby martd » Fri Aug 17, 2018 8:23 am

Loss of appetite is hard to deal with on chemo. Are you trying different approaches? Adding boost, ensure, advice my oncologist gave my is if you find something that works do it. Even if it's McDonald's hamburger. But I know it's difficult with me I would think of something for dinner that sounded good but when it came time to eat it just didn't work. A tip I like to give that worked good for me is red and white peppermint candy. It relieves the awful taste in the mouth. I would have one in my mouth while drinking water and before and during dinner.

I wish the very best for your dad, and you also hoping he can find some comfort

Dan
.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

Sugar
Posts: 5
Joined: Sat Jun 16, 2018 1:13 pm

Re: New here...feeling hopeless and sad about my father

Postby Sugar » Fri Aug 17, 2018 10:35 pm

Apple Tree,
Thank you for your response. You covered a lot of important points, and I am tucking them away for a little later. We will meet with his regular oncologist on Monday to talk about the MDA opinion. My father still hasn’t given up his fight, and is hopeful that his regular oncologist will see things the way he does—to take a 2 week break then start again. I suggested another PET scan, and he thinks the dr will want that, too. I have my doubts about that, since the dr was originally ambivalent about doing any treatment at all. My fear is that he, too, will tell my dad that it is time to stop. I don’t have the heart to tell him to prepare for this possible conversation. I have a feeling he may be hanging on to this last thread of hope.

We haven’t really discussed any issues regarding death or dying. My mom and brother don’t seem to want to deal with that yet. It is inevitable, I know, and I am sure after our meeting with the doctor next week we will have to begin having these talks. Could you share the name of the book you mentioned that has all of these questions to ask/information to get from your loved one? This may be an easier way to start these types of conversations.

I hope that you continue to have good health, and keep up the good fight that it seems you have been giving. I am also sorry to hear that your sister passed away, too. I will keep you in my prayers.

Sugar
Posts: 5
Joined: Sat Jun 16, 2018 1:13 pm

Re: New here...feeling hopeless and sad about my father

Postby Sugar » Fri Aug 17, 2018 10:49 pm

Dan,
We have struggled to find any one item that he can consistently eat or drink. He has had the cold sensitivity/first bite issues happening during his infusion week, in addition to the choking/gagging sensation when trying to swallow food that he has to chew a lot. Luckily, Nausea hasn’t been an issue. He complains that food has no taste, or tastes “off”. So, instead of forcing himself to eat/drink anyway, he takes a few bites and stops. He will drink a Boost/Ensure if we really push him to do so. Strawberries are his current favorite, but unfortunately don’t have many calories. It is frustrating to say the least! Some of it really comes down to just doing it even if you don’t want to. Sadly, now that he is finally seeing just how important eating/drinking really is, it may be too late. I am trying not to think the whole, “I told you so” thing, and for sure won’t say it, but it is what I have been stressing to him for the last 10 weeks. His stubbornness may have been his downfall. Plus, I do know that all of this is easier said than done, and that we are all human and can only be pushed so far. Still doesn’t make me any less angry/discouraged though.

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: New here...feeling hopeless and sad about my father

Postby martd » Sat Aug 18, 2018 10:17 am

What worked best for me was wet type foods, foods with sauce. Pasta is a good one. Another really good one for me was mash potatoes and gravy. And soup. I had the first bite thing too fortunately that was only with the first bite so I would be prepared for it , I would take a bite then just wait it out. But it can be painfull, You mentioned strawberries, right now I am doing strawberry protien shakes to help with healing. It's called body fortress, super advanced whey protein, strawberry flavor. It's nothing special I got it at Walmart. Another thing I learned when eating after I choked down a couple of bites it let up a little then wasn't so bad. Another winner was stouffer's lasagna.

Good luck , I hope the best for you and your dad
Dan
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: New here...feeling hopeless and sad about my father

Postby martd » Sat Aug 18, 2018 10:24 am

Forgot to mention mix the protein shake with milk, more calories and taste better. It reminds me of drinking nesquick strawberry milk when I was a kid.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

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

Re: New here...feeling hopeless and sad about my father

Postby rp1954 » Sat Aug 18, 2018 2:15 pm

It doesn't have to be that way. You can probably get him physically going again with a potent supplement and diet plan, well chosen. It doesn't have to be super expensive, and fast mail handles local availability problems. The right combination of chemo and supplements has literally gotten people out of bed, going downhill, onto the golf course the next day (usually the speediest, peak response part is IV vitamin C, for 1 good/great day).

As for chemo, the strongest, most successful, least damaging approach we've seen is daily oral chemo (5FU source) at tolerance + celecoxib (Celebrex) + well selected, strong supplements + IV vitamin C (veins?).
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

Sugar
Posts: 5
Joined: Sat Jun 16, 2018 1:13 pm

Re: New here...feeling hopeless and sad about my father

Postby Sugar » Sat Aug 18, 2018 8:11 pm

Dan,
We encourage him to drink protein shakes or smoothies, but he prefers milkshakes. When the cold sensitivity subsides, he does try to have those often. I just wonder though, if we are at the point of no return regarding weight gain. He is suffering from chemo brain and is getting disoriented easily. It could have to do with some malnutrition also, I guess. Sometimes it feels like when I speak to him that I am talking to a child. I pray that the 2 week chemo break shows a change in these symptoms, and that this isn’t just a continuation of his downhill slide. I guess only time will tell.

Sugar
Posts: 5
Joined: Sat Jun 16, 2018 1:13 pm

Re: New here...feeling hopeless and sad about my father

Postby Sugar » Sat Aug 18, 2018 8:17 pm

rp1954 wrote:It doesn't have to be that way. You can probably get him physically going again with a potent supplement and diet plan, well chosen. It doesn't have to be super expensive, and fast mail handles local availability problems. The right combination of chemo and supplements has literally gotten people out of bed, going downhill, onto the golf course the next day (usually the speediest, peak response part is IV vitamin C, for 1 good/great day).

As for chemo, the strongest, most successful, least damaging approach we've seen is daily oral chemo (5FU source) at tolerance + celecoxib (Celebrex) + well selected, strong supplements + IV vitamin C (veins?).



You have mentioned a lot of interesting ideas. I am going to ask his oncologist about the oral chemo and iv vitamin c. Thank you for sharing!

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: New here...feeling hopeless and sad about my father

Postby martd » Sun Aug 19, 2018 9:36 am

Chemo treatments are very rough to go through. I'm The type of person with a very high tolerance for everything emotional and physical and I'll admit it was miserable for me to go through chemo. The couple days following chemo were the worst then it would get better. Just keep doing what you're doing, gather information and keep trying. That was great advice by rp1954, I've seen many of his post he is a wealth of knowledge. So you have options. Be sure to communicate all his side affects and condition with his oncology team that is very important. Do you have a palliative care team involved? It's good to get them involved early in treatment. Palliative is not just for end of life with me my team involved them in the beginning and I still see a palliative Dr. they are a great resource for managing problems and complications. There's always hope, let's get him fattened up and let chemo do it's thing :D
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0


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