Hello - new here too
Comments
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I couldn't and still can'tgeotina said:Varmint5:
Oh, how my heart aches for you. At times us caregivers just want to make it better and we can't so just hang in there the best you can.
Oh, some other sites that are very, very good you may want to check out are: Colon Club, Fight Colorectal Cancer and Colon Cancer Alliance.
Take care - Tina
I couldn't and still can't stand talking about my cancer diagnosis..All my dad wants to do is talk about it and i really try and keep my distance as this is the last thing I want to talk about...Cancer has taken so much away from me and my family already I don't want to waste another breathe talking about it or another minute thinking about it..I just want to be treated normally.I still look normal do normal things I even still wakeboard so the last thing i want is sympathy or a reminder I have cancer.But this is just my perspective
Chrissy0 -
Thank you, Chrissy!chrissy83 said:I couldn't and still can't
I couldn't and still can't stand talking about my cancer diagnosis..All my dad wants to do is talk about it and i really try and keep my distance as this is the last thing I want to talk about...Cancer has taken so much away from me and my family already I don't want to waste another breathe talking about it or another minute thinking about it..I just want to be treated normally.I still look normal do normal things I even still wakeboard so the last thing i want is sympathy or a reminder I have cancer.But this is just my perspective
Chrissy
I needed to hear this.0 -
Varmint5Varmint5 said:Wow - more great responses
I could not ask for better responses that what I've gotten here. Thank you! Whether you are the patient, the caregiver, the mother, the daughter, the husband, the wife... you all GET IT and know your stuff. Wolfen - as a mother, you understand completely my perspective. Chrissy - as a daughter you understand my perspective and my daughter's. She should have been diagnosed when she was pregnant - that's when the symptoms started but her OB blew them off and explained them away. If only we could go back in time.
I can't see as I write this who said what but I want to thank all of you for your input. My thinking is that she would be getting the same treatment elsewhere. I am going to have her husband bring up things that were presented here and in other things I've read, i.e. the HAI (hope that's right) pump, etc.
I think at this point the plan is for her to complete 12 rounds of Folfox then regroup. Is this standard? Should she be getting something else while also getting Folfox? Do they do other liver-directed procedures while on Folfox? She is on Lovenox for blood clots so the doctor is holding off on Avastin, but I know he plans to add it sometime in the future.
Thanks!!!
I'm very sorry to hear what your daughter (and you) are going through. Being the one with cancer, I don't fully understand how it is to be on the outside looking in. It can't be easy. I have a few things to add to all of the wonderful comments that you've received.
You said:
"My thinking is that she would be getting the same treatment elsewhere." and "I am going to have her husband bring up things that were presented here and in other things I've read, i.e. the HAI (hope that's right) pump, etc.".
PLEASE don't assume she'll get the same treatment elsewhere. While it could be the case, it's certainly nowhere the norm. There recently was someone on this forum who's Dad was dx with stage IV colon cancer with mets to his liver. They lived right outside Philadelphia so one would think that the cancer center they went to was up to date with treatment options. He was told there was nothing that could be done...
When I saw the post, I responded to the son and we soon started a conversation off-line through email. His Dad's situation sounded very similar to mine. My first Onc wrote me off but my second opinion, at Sloan Kettering, changed everything. When my new Onc, Dr. Kemeny, saw my scans she said that we can work with this. I did the FOLFOX which is pretty standard and in my case, I was able to postpone surgery until I finished the 6 months of chemo. Her approach was using the HAI infusion pump. Video of Dr Kemeny explaining HAI pump therapy. I directed them to Dr. Kemeny and when she saw the scans, she felt that she could successfully treat him. When his Dad told his current Onc of the new plan, he poo-poo'd it saying it doesn't work. THEN, the Onc must have Googled Dr. Kemeny and all of a sudden said "it will be an honor to work with Dr Kemeny" (an Eddie Haskill Leave it to Beaver Mrs. Cleaver move for sure). I had the pleasure of meeting the son, his Mom, and his Dad at SK a few months ago. So far he is responding well to FOLFOX, the HAI pump will be installed in 4-5 months. I am in contact with them, a very nice family...
Of course, there are ABSOLUTELY NO GUARANTEES at all with ANY CANCER TREATMENT. But, there are some oncologists who are more up to date with treatments and there are also some who don't have huge egos and are willing to try letting another doctor call the shots.
In closing, if your daughter's current Onc either never heard of or thinks the HAI pump is BS, I'd rethink having them as MY Onc. That's just me.
With regard to talking about cancer I know it can sometimes be boring for those of us dealing with it. With me it's more a question of who is asking me. I find the chit-chat of "How Are You?" to be annoying at times but I have yet to tire of talking about cancer when it can help give someone that extra push to get a colonoscopy to (hopefully) prevent them going through what I've gone through. To date, I've done four interviews dealing with that. I hope it's help a few catch it early.
There is no Right or Wrong way to go about this. The main thing that one has to be comfortable with the choices they make. There isn't much room for "do-overs". As they say at Sloan Kettering "where you go for treatment first can make all of the difference"
Best wishes to your daughter, her family, and to you...
-p
Background ~ Dx Feb 2004, stage IV colon cancer.
Still undergoing chemo for lung mets. Liver and colon have been clear since initial surgery in Sept 2004.0 -
As a cancer survivor, IVarmint5 said:Another thing...
To those of you who are battling the disease - I have a question. Initially, I kept asking my daughter "Are you okay?" and talking about the cancer - I did learn (was asked) to stop this. And I found I could settle down some once I realized she was not on her death bed and she was actually getting better.
I feel like if I stop talking about the disease she will think I am not concerned or that I've pushed it under the rug. But then I also know that she wants to shop, eat, play with the baby, do fun things totally unrelated to cancer. So I'm trying to be "that" fun mom, but I feel like I am doing her a disservice by "ignoring" the cancer. This is so hard. Especially since all I really want to do is grab her, set her on my lap and hold her and and kiss her and cry and cry. And that would be MOST unproductive! I can see her rolling her eyes as I type this.
My heart goes out to all of you. What a nightmare this is.
As a cancer survivor, I have to second what Chrissy said. We all know that the canccer is in the back of your mind, as it is in ours. However, I know that I want to live as normal a life as possible, and forget about this disease whenever possible, to live as a healthy person (even if a deluded one!) Your daughter knows of your love, caring, and concerns, but she needs to escape from constantly thinking about cancer. Believe me, it haunts her constantly.
Shopping, being with friends, going to a movie, eating out are all parts of the normal world that your daughter seeks.
Yes, ask how are you feeling, but then move on unless she wants to air cancer concerns.
It's hard seeing your child hurt, but she does need space to forget once in a while.0 -
Agreedabrub said:As a cancer survivor, I
As a cancer survivor, I have to second what Chrissy said. We all know that the canccer is in the back of your mind, as it is in ours. However, I know that I want to live as normal a life as possible, and forget about this disease whenever possible, to live as a healthy person (even if a deluded one!) Your daughter knows of your love, caring, and concerns, but she needs to escape from constantly thinking about cancer. Believe me, it haunts her constantly.
Shopping, being with friends, going to a movie, eating out are all parts of the normal world that your daughter seeks.
Yes, ask how are you feeling, but then move on unless she wants to air cancer concerns.
It's hard seeing your child hurt, but she does need space to forget once in a while.
You can't let cancer define who you are. Many of us are people who happen to have cancer. Personally, I think a bad place to consider yourself a victim of cancer. The only way you can be a victim is to believe that you are one.0 -
PhilPhillieG said:Varmint5
I'm very sorry to hear what your daughter (and you) are going through. Being the one with cancer, I don't fully understand how it is to be on the outside looking in. It can't be easy. I have a few things to add to all of the wonderful comments that you've received.
You said:
"My thinking is that she would be getting the same treatment elsewhere." and "I am going to have her husband bring up things that were presented here and in other things I've read, i.e. the HAI (hope that's right) pump, etc.".
PLEASE don't assume she'll get the same treatment elsewhere. While it could be the case, it's certainly nowhere the norm. There recently was someone on this forum who's Dad was dx with stage IV colon cancer with mets to his liver. They lived right outside Philadelphia so one would think that the cancer center they went to was up to date with treatment options. He was told there was nothing that could be done...
When I saw the post, I responded to the son and we soon started a conversation off-line through email. His Dad's situation sounded very similar to mine. My first Onc wrote me off but my second opinion, at Sloan Kettering, changed everything. When my new Onc, Dr. Kemeny, saw my scans she said that we can work with this. I did the FOLFOX which is pretty standard and in my case, I was able to postpone surgery until I finished the 6 months of chemo. Her approach was using the HAI infusion pump. Video of Dr Kemeny explaining HAI pump therapy. I directed them to Dr. Kemeny and when she saw the scans, she felt that she could successfully treat him. When his Dad told his current Onc of the new plan, he poo-poo'd it saying it doesn't work. THEN, the Onc must have Googled Dr. Kemeny and all of a sudden said "it will be an honor to work with Dr Kemeny" (an Eddie Haskill Leave it to Beaver Mrs. Cleaver move for sure). I had the pleasure of meeting the son, his Mom, and his Dad at SK a few months ago. So far he is responding well to FOLFOX, the HAI pump will be installed in 4-5 months. I am in contact with them, a very nice family...
Of course, there are ABSOLUTELY NO GUARANTEES at all with ANY CANCER TREATMENT. But, there are some oncologists who are more up to date with treatments and there are also some who don't have huge egos and are willing to try letting another doctor call the shots.
In closing, if your daughter's current Onc either never heard of or thinks the HAI pump is BS, I'd rethink having them as MY Onc. That's just me.
With regard to talking about cancer I know it can sometimes be boring for those of us dealing with it. With me it's more a question of who is asking me. I find the chit-chat of "How Are You?" to be annoying at times but I have yet to tire of talking about cancer when it can help give someone that extra push to get a colonoscopy to (hopefully) prevent them going through what I've gone through. To date, I've done four interviews dealing with that. I hope it's help a few catch it early.
There is no Right or Wrong way to go about this. The main thing that one has to be comfortable with the choices they make. There isn't much room for "do-overs". As they say at Sloan Kettering "where you go for treatment first can make all of the difference"
Best wishes to your daughter, her family, and to you...
-p
Background ~ Dx Feb 2004, stage IV colon cancer.
Still undergoing chemo for lung mets. Liver and colon have been clear since initial surgery in Sept 2004.
Phil,
Thanks for that link. I loved seeing one of my favorite people on this lovely Sunday morning.
I found it very interesting that response rates to treatment were greater for those patients that had had no previous treatment as opposed to those who had done other treatments first. I also hear that radio commercial about "where you go for treatment can make all the difference" and I completely agree.
Happy Sunday!0 -
:-)mom_2_3 said:Phil
Phil,
Thanks for that link. I loved seeing one of my favorite people on this lovely Sunday morning.
I found it very interesting that response rates to treatment were greater for those patients that had had no previous treatment as opposed to those who had done other treatments first. I also hear that radio commercial about "where you go for treatment can make all the difference" and I completely agree.
Happy Sunday!
I was pleasantly surprised to find that video of Dr Kemeny. I was looking to see who pioneered that HAI therapy (not that it matters but I do think it was her). It was interesting to see the data on the study. While I'm not a huge fan of stats it was interesting to see the comparisons. I am a firm believer in SK's motto. I have no proof but I strongly believe that if I did what the first onc I had prescribed I would not be using a computer now, it would be a Ouija Board...
I had an interesting experience yesterday regarding a research facility I got to visit that I plan on posting about shortly.0 -
history
The HAI pumps were in extensive trials by the early 1980s. Lots of sizzle and $$$$, but only low caliber ammo like 5FU and mitomycin were available, probably adding a few months or perhaps 20%. Now improved multimodal techniques and chemo, particularly FUDR make a bigger difference for select patients.0 -
HAItanstaafl said:history
The HAI pumps were in extensive trials by the early 1980s. Lots of sizzle and $$$$, but only low caliber ammo like 5FU and mitomycin were available, probably adding a few months or perhaps 20%. Now improved multimodal techniques and chemo, particularly FUDR make a bigger difference for select patients.
Thankfully, like many other things they've come a long way since the 1980's.
It doesn't sound long ago but it was 30 years ago...
The video seemed to say that the benefits were far reaching with the HAI pumps.0 -
Thank you, PhilPhillieG said:HAI
Thankfully, like many other things they've come a long way since the 1980's.
It doesn't sound long ago but it was 30 years ago...
The video seemed to say that the benefits were far reaching with the HAI pumps.
This is good information. I'm sure I will bring up the subject and pursue it, but not right now. She had her last chemo last week and is scheduled for colon surgery next week. The Folfox is working remarkably well - I hate the rock the boat on that one at this point - 12 rounds of it are planned and she's had 8.
I want to watch the video but my speakers came unplugged from the darn computer and it's all so hard to get to in this desk... going to try to put it back together tonight. One of the oncologists in the group talked to us about SIRT spheres and RFA as options. The radiation oncologist also talked about the spheres but says we should finish the Folfox first and see what remains and work from there. But from what I've been reading it sounds like the HAI pump might be a better choice.
Is it reasonable to let her get nearer the end of the Folfox treatments before pushing this issue? I can continue to gather information and check who does the HAI pump in our area - the middle of the country. I would also like to know if the oncologists in this area are experienced in this treatment - would be willing to travel anywhere if need, obviously. So it's good to have some names here.
On a side note - I really don't think I will post on the Colon Club. There is a member there who comes on and rattles off statistics and says that everybody who is stage IV is doomed. I can't imagine what purpose that serves on a "support" forum and do not want to go there.0 -
Sloan doctorsPhillieG said:DOCTORS
I would have to wonder about having an oncologist who is going through what I am at the same time. I think they may have a rough time being impartial. I also have the same oncologist at Sloan that Amy does. She is a pioneer in HAI therapy. If there is one thing I've noticed over the years it is that having a great DOCTOR makes all of the difference in the world.
Best wishes to your daughter...
-phil
Hi,
I was dx colon cancer with mets to all segments of liver. Largest is some 11 cm x8 cms 7 cm in the liver.
Have started on FOLFOX and erbitux without any resection of primary tumour.
Have completed 3 cycles. Am based in India but after another cycle will get ct scan done and seek opinion at Sloan .
I am sure that the doc u mention at Sloan is Nancy kemeny . Or is there someone else u r referring to.
Pl help me in providing as much info as u can withnregards to treatments that I should seek , alternative therapy, supplements
Etc for countering side effects . Every little bit of information helps. As you know, in India Docs blindly follow the prescribed FDA norms and
Have no idea or since there is little in terms of advanced care they only treat with treatments which in USA were done 5 to 8 years ago.
I will appreciate all and any info anyone can give to me.
Thanks
Sdp0 -
Sloan doctorsPhillieG said:DOCTORS
I would have to wonder about having an oncologist who is going through what I am at the same time. I think they may have a rough time being impartial. I also have the same oncologist at Sloan that Amy does. She is a pioneer in HAI therapy. If there is one thing I've noticed over the years it is that having a great DOCTOR makes all of the difference in the world.
Best wishes to your daughter...
-phil
Hi,
I was dx colon cancer with mets to all segments of liver. Largest is some 11 cm x8 cms 7 cm in the liver.
Have started on FOLFOX and erbitux without any resection of primary tumour.
Have completed 3 cycles. Am based in India but after another cycle will get ct scan done and seek opinion at Sloan .
I am sure that the doc u mention at Sloan is Nancy kemeny . Or is there someone else u r referring to.
Pl help me in providing as much info as u can withnregards to treatments that I should seek , alternative therapy, supplements
Etc for countering side effects . Every little bit of information helps. As you know, in India Docs blindly follow the prescribed FDA norms and
Have no idea or since there is little in terms of advanced care they only treat with treatments which in USA were done 5 to 8 years ago.
I will appreciate all and any info anyone can give to me.
Thanks
Sdp0
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