The Colon Club

ginabeewell wrote:Well, Dr Kemeny had a last minute change of heart and pulled the Vectibix. I wondered aloud to my local oncologist and got the sense that she didn’t know either, her theory on it didn’t make sense (unless it was a change in strategy due to Covid and no longer wanting to pursue super aggressive treatment for smallish lesions?).

At any rate, I found the Vectibix rash BY FAR the worst side effect to date, so that news came as a relief.

I’ve thought a lot about why this recurrence is so emotionally deflating (other than the obvious). When I decided to keep working in the wake of my initial diagnosis, I got the feeling that if I recurred, THAT would be the time to quit because it would be a sign that I wouldn’t make it.

My therapist has warned me a few times of our brain trying to make sense of something so as to regain control. And I think that’s what I kind of tried to do - tell myself I would know what would happen if X happened.

The truth is that nobody knows what will happen. And my dominant emotion in the wake of the news wasn’t dread that this is going to kill me - just lots of sad that I have to get through it.

Yay on pulling the Vectibix!

Most likely her decision was based on how aggressive she thinks the recurrence is PLUS the added risk of Covid. So putting you on just Folfiri is a good sign!

(sigh) The control issue... I've been there. You're right no one knows what will happen. There were times during my treatment that were pretty dark. I'm not sure how I got through them, but part of it was trying not to think too much about what might happen. Occasionally, I pushed Dr K too far and she slapped me down with a "we'll see - just do what I say for now." Just knowing she was never going to give up on me and was willing to fight like hell for me make it easier to turn my worries over to her. A few Ativan before bed helped a lot too!

Let me know how it goes with the RSO and Dex combo.

Juliej

My DH had a lot of the same joint pain after being on chemo a while, Probably about 2 yrs into it. He saw a rheumotologist that works in the same office as his local oncologist and did all the RA testing. Some of it was elevated, and she prescribed some drugs (diclofenac and hydroxychlorquine). Both did help, but in the end the thing that helped the most was being of chemo, and more importantly, the steroids in his pump! he was on this for so long due to elevated liver enzymes, that when he came off it, I think it messed a lot of things up. But several months of being off the deca in the pump and things got better. He is back on xeloda now, but the joint pain hasn't returned (knock on wood!).

I hope you will qualify for surgery to remove the new spots. DH did end up having SBRT on his liver recurrence and that was 2.5 yrs ago. So far, so good. He saw Dr. Rommesser at MSK for that, and he is such a great guy. Younger, funny, and really cares and spends time with you.

Hey, Gina, I've been thinking about you and hope that all is well.

And that your family was able to have some semblance of a nice Memorial Day weekend in these weird times!

Cancer is never a dull moment.

I had a bad night about a week ago. I got sad / mad and sort of lost my shit - not at anyone, just at the cancer itself. This recurrence has really been difficult to process and between it and work stress (20% pay cut anyone?) and Covid, I just hit a wall.

Anyway, my husband’s ex is now not letting the stepkids come back. My 14 year old stepdaughter “doesn’t feel safe” and won’t talk about it with anyone because she “doesn’t feel safe.” And her mom won’t let her back until she does. This is made doubly complicated because apparently she’s been complaining about me being critical and not wanting her to be herself for months. And while I leave room for the possibility she feels that way - she’s 14; irritated at my insistence that she 1) come to dinner, 2) not have her phone at the dinner table and 3) properly socially distance. Most of all, I think my cancer cramps her style and she’s created a reason why she can’t be here.

I’m devastated, as is my husband. He was talking about thinking suicidal thoughts this weekend - and he’s wired to be happy.

I am so angry and I feel betrayed. I kept it together for 18 months with stage 4 cancer, but one night of yelling (I don’t really yell; almost ever) and it’s all over.

By law we get them every other week, but she’s saying if we try to enforce that, she will file an emergency motion. I’ve done enough court to know that rarely goes the way you want it to go.

Gina, you have been managing your cancer stress very well to have done it for 18 mths. Its ok to let whatever emotions out for your own well being without apologies. The fact that family is stressed out is a whole other issue. Some selfishly take advantage of a loved ones dx and others have those times of feeling helpless. From all I have read about the domino affect of emotions with cancer and that your family is going through this, counseling might be something to consider especially for you and husband.

beach sunrise wrote:Gina, you have been managing your cancer stress very well to have done it for 18 mths. Its ok to let whatever emotions out for your own well being without apologies. The fact that family is stressed out is a whole other issue. Some selfishly take advantage of a loved ones dx and others have those times of feeling helpless. From all I have read about the domino affect of emotions with cancer and that your family is going through this, counseling might be something to consider especially for you and husband.

Thanks.

I have a therapist I see weekly. As does my stepdaughter.

Unfortunately it does little good if your family members doesn’t choose to share anything with you until they decide they are done living with you. Then it’s too late I guess. My stepdaughter’s mom has been aware of how she’s been feeling, but told us only that something is wrong, and she can’t share something her daughter told her in confidence.

I’m just beyond. I thought you had to be a bad parent to lose a child. Nope nope!

Makes no difference that I’m the one making dinner, making arrangements, finding doctors or anything else that a primary parent might do. Because I’m not a real parent, only a stepparent. So I don’t count.

Curious how many other cancer patients lost their children when they went through treatment.

I’m so sad, and so so angry. It’s not fair.

Losing children thru treatment is a good topic discussion!

So sorry you're going through this on top of everything else, Gina... Teenagehood is a difficult period to start with - even without the added struggles of cancer. Your stepdaughter is probably very scared, and because of the situation (mother available as an alternative place to stay), she has the opportunity of going away - by not seeing you, she can block something stressful from her mind, pretend it does not exist.
But of course I'm not a therapist. I'm glad my own children are (mostly) grown now, that they don't live at home (most of the time - we do have our daughter back for the summer) and did not see their father struggle and suffer. His cancer is taboo, at least it does not get discussed in his presence; I act as a buffer, passing on basic information and everybody is happy with this arrangement... For now... There are difficult moments, when like you he "loses it" - and we discussed how that's ok, as long as it's also ok for me to lose it at times, too. Typically we "lose it together" then rally up.
But it's stayed between the two of us, again because the children have not been at home during the most difficult times.

Claudine wrote:Teenagehood is a difficult period to start with - even without the added struggles of cancer. Your stepdaughter is probably very scared, and because of the situation (mother available as an alternative place to stay), she has the opportunity of going away - by not seeing you, she can block something stressful from her mind, pretend it does not exist.

I think this is very likely what is happening. But nobody is framing it that way. Instead, we have a story about a nasty critical stepmom who lost it one night 18 months after diagnosis. And a situation that does not "feel safe" for the kids.

I wonder if anyone feels safe right now.


I think it is hurting so much because if you asked me what I was proudest of in my life - it wouldn't be my fancy job or salary or the fact that i bring billion dollar accounts into our agency. It would be how proud I am of our blended family, and how much love and awesomeness we have in spite of the crazy with four kids. So i feel like an idiot beyond my sad and mad. i am not a bad mom!! or stepmom!!

Recently a friend took in her grandson when he ran aground with his relationship with his mother . She was trying to get him to work at school . His gran totally accepted he did not wish to so there was no conflict to resolve there and they have had a good year together . However his mother has been in pain emotionally over it as she was not on board with this arrangement . What struck me was they lost the opportunity to try and resolve their issues as he could step away from it without having to face it . Will that be his default setting when life gets tough ! Her mother is onboard with the situation so I don’t see what you can do even although there is an injustice. I felt sympathy for the mother in the above situation as I have laboured the benefits of education too . I thought she was trying to be responsible. He dropped out of school and she had absolutely no real say . Once you give them an opportunity to not work through they can easily walk out .
I really don’t shout either , I actually don’t have a strong voice and it does not sound very effective anyway . I did give it a go when I saw my son’s corona haircut !!! However I have one son despite this who remembers in detail every time I have lost it . I can only think it was because it was a rare event !!
Sure he would be ill prepared for life if he did not have to navigate his mother’s emotions now and again ! You are human and I would try and not absorb all of that at the moment. You can only try and do your best as you have always done .
Take care ,
Stu

Hi there I was reading your journey and had a few questions.

My husband was diagnosed in 2016( age 45) with CRC Stage 2B and had surgery and then did Xeloda for 6 months after. All scans and bloodwork have been normal until 1 month ago. On his last scans the noticed a 7cm spot on his Liver but nothing anywhere else. He is already on his 3rd chemo treatment and they are suggesting 1 more and then a Portal Vein Embolization followed by Liver resection ( right side) . We are in GA and no one has ever mentioned anything about a pump. Is that something we need to be asking about or is that not necessary if he is able to have the resection and there are no other METS?

missb2020 wrote:Hi there I was reading your journey and had a few questions.

My husband was diagnosed in 2016( age 45) with CRC Stage 2B and had surgery and then did Xeloda for 6 months after. All scans and bloodwork have been normal until 1 month ago. On his last scans the noticed a 7cm spot on his Liver but nothing anywhere else. He is already on his 3rd chemo treatment and they are suggesting 1 more and then a Portal Vein Embolization followed by Liver resection ( right side) . We are in GA and no one has ever mentioned anything about a pump. Is that something we need to be asking about or is that not necessary if he is able to have the resection and there are no other METS?

The HAI pump is definitely worth investigating for anyone with liver mets, as that is the site most likely for recurrence. But you may not be able to get it done locally - I think MSK in NY and City of Hope in LA are the only places that really push it. A handful of other places do offer it - like Northwestern in Chicago - but in my case my MSK oncologist calls the shots on treatment. And my experience has been that manner centers downplay the effectiveness of the pump, probably because they don’t have the expertise. So don’t be discouraged if you ask and someone in GA tries to dissuade you!

Kemeny finally saw my scans and I had my first Telehealth appointment.

One spot was smaller; the other stable.

Between size and position, she says they aren’t operable or an option for ablation. She wants me to add Vectibix back into the mix in the hopes that the more aggressive treatment will help.

I want to cry. I hate Vectibix so, so much. And overall this feels like it’s moving me closer to a “chemo for life”’plan.

Ugh.

But if it keeps you going until the next big breakthrough, and if that breakthrough works for you, it will have been worth it, right? That's basically the long term view the doctor I consulted at D-F suggested. I fully admit that so far I have been lucky that the last big breakthrough worked for me. But if it stops working, there's no chemical alternative. The upside, the downside...I'm pulling for you.

And I hope your family situation is less fraught. That's the last thing you need. Hugs.

Apologies Gina - I cannot remember if you still have a HAI pump (or ever had one)? Is this how your chemo gets delivered? Again, apologies if I get things confused, but since DH has never had anything wrong with his liver, I'm not on top of things with that regard.

I'm sorry that you have to get Vectibix again - I do remember how much you hated it. Like Boxhill, and many here, the hope is that some type of major breakthrough is around the corner - with CRISPR or other approach - and that people who are currently told that they're on chemo for life will eventually be able to be treated (cured?!?). And you're not there yet. Wishing you strength for the continuation of this journey XXXXX