New here, need some advice please

danker said:

chemo

I had a chemo pump for the 5 weeks i was getting radiation .  Then after the resection and an iliostomy which was reversed 6 weeks later, my  oncologist wanted more chemo.  

The surgeon said not necessary.  my colonoscopy the the following year was NED.  A second colonoscopy  this year , almost 5 years after diagnosis,was also  NED.  As i am 82. 

I believe I have had my last colonoscopy!!! We are all different, but I thought you might like to hear my history with chemo.  Best of luck to you whatever you decide.

Danker, thank you. I was thinking about calling my surgeo's office tomorrow to ask if there's anyone I can talk to about this.

I'm scared that it will come back and I'll regret not doing the chemo. I'm unhappy with my chemo doctor for making me not feel confident. The main thing we need to have is hope and she made me feel like there wasn't. I have to admit that I don't like her and haven't since day one. She's not nasty but she's got a very 'oh well' type of attitude. My port was badly done and every healthcare practitioner from nurses to other doctors have comented on how badly it was done- badly placed near the centre of my chest, the scar runs right across the surface where they put the needle in and it sits on a bone and the slightest pressure makes it hurt- but when I mention it to her and show her she always says it's fine. Which I find dishonest. They hit a nerve when they inserted the port and the pain afterwards and for days was unbelievable but when I told her she was unruffled as usual.

I told my surgeon last time that I wasn't happy with the chemo oncologist and he said he could refer me to a new one but the situation wasn't so bad that I wanted to do that. Now that she's being so casual about the upcoming chemo I wish I had. But there's not time to change doctors now. 

JanJan63 said:

Thank you!

Thank you both for the replies. Apparently, I'm not very good with math because I'd be having 8 treatments over 4 months, not 16. The basic chemo in the folfox, which I can't remember the name of, is the one I was on before but I didn't have the two additional ones I'll have now. And I'm not sure what side effects came from that and what was from the radiation I was on at the same time. I found that the anti-nauseants didn't help much and nobody warned me that my sense of smell would be heightened to the point where I had the smelling ability of a dog. It made the nausea much worse, too. I didn't have the mouth sores so that was lucky. I had it full time in the baby bottle last time, not for two days every two weeks.

I'm happy with the rest of my team, it's just my chemo doctor that is so bland that I don't feel confident with her. I know two people who suffer long term effects from having chemo and that scares me, too. I just so don't want to go through the chemo again. I didn't even finish it last time, they gave me the last week off because I couldn't tolerate it anymore.

Easyflip, I am glad I found this forum. And our parents are both gone. My dad from enphysema and my mom from pancreatic cancer.

Lovekitties said:

Welcome to the board

The positive and negative sides of chemo are always on the decision scale.  There is no absolute answer unfortunately, as all bodies are different and can respond differently to the same treatment.

Let's say you start chemo.  You can always stop.  The one thing you should definately do is find a new chemo doc.  You can do this while in treatment so don't let that deter you.  Having a doctor who inspires confidence is very important. 

Regardless of what you choose to do, you must never look back and say "if only".  We all make decisions based on the best info available at the time.  Always look forward.

Wishing you the best with what ever you determine to do.  Hang out here for an extra dose of support.

Hugs,

Marie who loves kitties

Thank you Marie. I already have to say 'if only' due to the fact that my doctor wanted me to have a colonoscopy two years before I actually did. I probably could have had a polyp lopped off and been fine now. But I didn't want to go through the embarassment of it. Stupid, stupid, stupid. If I were able I'd kick myself in the butt.

Trubrit said:

Welcome to the forum

You are on a long road filled with dilemas. There is no easy answer to your question, and I wish you all the luck in the world. 

If you are not comfortable with your Oncologist, I would check out a few more, though you are what I would imagine, pushed for time.

i personally would do the new chemo regime. 

My history is a Colon Resection, 21 lymph node removed with one infected. Started as a Stage IIIB.

Nine rounds of FOLFOX infusion every two weeks with the 5FU pump for 48 hours. Chemo wasn't a blast. I lost most of my hair,  vision periphial and depth perception. Nausea was held at bay with drugs. Tons of other side effects, all were livable just not fun. 

Followed FOLFOX with six week hook-up yo 5FU & radiation. Radiation was nothing short of Hell. 

approx six months NED (no evidence of disease) and the a liver met appears so I had that zapped. Now Stage IV. 

i don't regret any of the treatments that I have had, even the radiation, which was THE most awful experience of my life (this coming from a woman wh had a C-Section without anesthetic). I have had total confidence in my team. Which in my opinion is a must. 

I am sorry, very sorry about your port. They are truly wonderful things, when positioned right. I doubt you would want to get it out or repositionEd at this point. 

I apologize for any spelling mistakes. It is early an morning here in Wales, UK and the brain is waking up with the birds. 

Dont EVER feel bad about asking any kind of question. We are all here to listen, help, love, laugh & cry with each other

I want to thank you all for your responses. I'm going to go ahead and start the chemo and see what happens. I'm not sure if I'll ask for a change in oncologists at this point. Hopefully this will be the last time I have to deal with her and I don't want to have to drive to meet a new one. We live in a town that's about 45 minutes from the city where the cancer centre is.

Trubrit, the radiation/chemo was bad and I never anticipated the fatigue would be that bad. I figured I'd be in bed a lot but would watch TV or read or draw or whatever. I didn't realize I'd be lying there staring out of the window for weeks without caring about anything. And the nausea, I've only just stopped gagging when I brush my teeth a few weeks ago and my chemo stopped at the end of March.

The worst for me was the complications after the resection. I went home after six days and was feeling pretty horrible but when I was readmitted and had to have the drains put in for the abcesses it was the worst. They didn't put me under to shove two drains through my buttock into the abcesses. They just shove a big needle in that freezes as they go and then a wire pulls the tube through. I had one and that one was removed after five days and then it turned out I had a second abcess so they put in another one. I knew how painful it was and was hysterical by the time they did it. And I'm pretty tough. I spent two weeks in the hospital that time and, God forgive me, I wanted to die because the pain was so bad and I was in such terrible shape. The recovery has taken so long and I wondered if I'd ever feel anything like normal again. I feel pretty normal now other than getting tired easily and I loathe the idea of putting myself back into any kind of situation that means I'll feel horrible again.

Anyway, I know all of us here have suffered in many different ways but if we're on here after our diagnosis it means we're still fighting. And that's what really matters. My adult daughter once said she'd never go through what I've been through, she'd tell them she didn't want treatment if she ever finds out she has it. Which is certainly possible, unfortunately. I asked her if she could imagine me looking her and my husband in the eye and telling them that I'm not even going to try, I'm just going to let myself die.

Annabelle41415 said:

Welcome

Welcome to the group.  As you can tell there are a lot of knowledgeable people here and caring beyond words.  I'm glad that you decided to at least try to start chemo because you can always stop it at any time.  My team of doctors suggested that the follow up chemo would be best for me.  It sounds like you had a pretty rough time at the beginning and can understand why you are so reluctant to move forward with yet another process of healing.  I'm sure that if your daughter was faced with a possible cure and needing treatment she would reconsider her position.  Hopefuly that will never have to be her option so I'm glad that you showed her your strength.  If you can't handle it in the future, please talk to your doctor because they can always reduce the dose.  Wishing you the best moving forward and please let us know how you are doing.

Kim

Thank you Kim. I'm positive for lupus and the talk on here about how chemo makes things you'd get later- such as arthritis- happen earlier scares me. My hip joints ache almost all the time and I don't know if that's from the previous chemo. I hate how everything now makes us wonder if it's to do with the cancer or the chemo. Today I have a leg that's aching terribly, why is that? I didn't do anything to it. Maybe it's something that would have happened anyway but now I wonder. It breaks my heart that we're all going through this.

That was one of the hardest parts about going for radiation and chemo, seeing so many other people battling this. It was such a shock when I first heard the numbers. So many of us, it's just heartbreaking. And we'll never be the same. Several times I broke down at the clinic while I was waiting. Seeing someone very frail or elderly, seeing a young woman that had lost her hair, seeing people with containers on their laps. Some days it was completely overwhelming and I'd just sit and cry.

When I have to go there even for just follow up appointments I can hardly sleep the night before and I cry on the way there.