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Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Hello, everybody. I've been reading this board since October but have not "joined" or posted. So... here goes. My precious daughter is the one with the disease. She is 32 years old, she and her husband just had their first child late August. She was diagnosed 7 weeks later. It's been just devastating for all of us.

She got a temp ostomy and began treatment with Folfox, then 28 radiation treatments. Now, surgery is planned for Feb. 24 to remove the colon tumor. She is trying to stay upbeat and positive but is scared. She will not come on any of these boards but knows that I do, and I pass on positive information I find here.

There have been some ups and downs - the chemoradiation was hard. And initially, she needed several blood transfusions and had several blood clots and had to have a vena cava filter. There are many tumors in her liver but none seen elsewhere, except the colon. All tumors have shrunk substantially, and she feels better than she has in months and is doing things and enjoying her life and family and ready to get this surgery behind her and continue treatment. Her appetite is good, even though she's lost a lot of weight - it has stabilized and she hasn't lost more weight over the past four months.

She has an oncologist who recently had a recurrence of colon cancer. He is very negative and pessimistic about her case. He is very nice to her and encourages her and I believe feels a kinship with her, but he spares nothing when talking to me and basically gives her no hope - he made this statement to me last week. So these past few days I have spent crying and trying to breathe and pull myself together because I'm bringing her and the baby home for a visit next week - first time since all this started.

It is so confusing because her radiation oncologist told them that she is doing so well and her tumors appear to be dying. He said he believes they will bring her into "complete" remission. He said that the chemo appears to be taking care of the liver tumors and if there are any left they can do SIRT spheres. This conversation took place last week also, the same day as my conversation with her primary oncologist.

I don't know what to think. I have written a long letter to the oncologist asking him to get on board and HOPE with us for a future for my girl instead of approaching this as if she is on her deathbed without hope. I believe she can feel his pessimism. I don't think it serves any useful purpose.

Suggestions, anyone??? Positive reinforcement? I am beside myself.

neons356
Posts: 58
Joined: Dec 2010

Find a new primary oncologist, one who's on the same page as the radiation oncologist. The last thing she needs is that kind of negativity.
Carl

Brenda Bricco
Posts: 579
Joined: Aug 2011

I know how you are feeling... the onc that dx my husband was the same way. My husband like your daughter had a very good response to chemo and is doing very well. We are doctoring at the University here in Wi. now and they are very optimistic and shooting for a cure. It was very hard to stay positive with "Dr Doom" telling us there was no hope.

You have been reading the posts here for a while so you have seen there are people that are surviving and living way beyond what they were suppose to according to some docs. May I suggest that your daughter get as many opinions she needs to get until she finds the one that is going to fight for her life and allow her hope. She has so much to live for, she doesn't need someone telling her she can't do it.

I am so sorry that you are in such a heart breaking situation but know that you have us to support you and celebrate the victories. Hugs to you and know that there is so much more hope than what she has been given. GOD has the power to change all of this so have faith mom and come here when ever you need someone to pick you up, we'll come running!

GOD bless you!

Brenda

Lovekitties's picture
Lovekitties
Posts: 3366
Joined: Jan 2010

So very glad you have joined in, but so very sorry to hear that your sweet daughter is sharing this disease with us.

First off, I suggest that she get a new oncologist! While stage 4 colon cancer is not a good thing, it does not have to be an eminent death sentence either. There are folks on here who have lived well beyond any statistics or predictions. At this point you all need someone who will work with your daughter to help her have a long life, not one who is so pessimistic.

There is always hope...up until the last breath. Since she seems to be responding well to treatment that is a great thing.

None of us know exactly how many days, months or years we will have on this earth. We just have to live them to the best of our ability.

Surround yourself and your daughter with a medical team who will actively treat her with the idea of seeing her being around for a long long time.

Hugs,

Marie who loves kitties

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

I have to wonder if her oncologist is projecting his own fears about his own recurrence onto your daughter - if he can't cure himself, then how can he help anyone else?

Find a new oncologist who isn't as caught up in his own issues, and can looke at your daughter as the individual she is.

Stage 4 is not a death sentence. At almost 5 years out from a Stage 4 diagnosis, I am happy, healthy, and living a "normal" life. No expiration date is in sight, and I plan to keep it that way.

Hugs,
Alice

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

What an Onc, okay, so the Onc must be feeling depressed over his diagnosis,and he's passing his feelings on to your daughter's case to you.
So...hopefully you will be able to talk your daughter into firing the jerk (to put it lightly)and finding one with a good outlook.
So I had many, many tumors in my liver so many they said I would never qualify for surgery. Now I've had my surgery, those tumors were shrunk enough and sooo many just disappeared due to chemo and after being told six months I'm still here two years later.
I think the onc has a problem relating to his own colon cancer mentally and you really to find an onc not going through a re-occurance.
My heart goes out to you dear lady, hang in there, and find a GOOD onc for your daughter.
Winter Marie

mom_2_3
Posts: 965
Joined: Nov 2008

My heart was breaking as I read your post as I can feel your pain in your words. I was diagnosed with Stage IV during the actual birth of our third child. The attending surgeon was "feeling around" my abdomen after the baby was removed and she felt a node which was biopsied on the spot. A subsequent scan the next day showed 5 mets across my liver. It was so scary. I can still remember our appointment with a local oncologist, my newborn sitting in a carseat right next to me, that I would have 22-24 months. The pain when I looked down at her was unbelievable.

I read that people that travel greater than 10 miles from home have better outcomes (perhaps from seeking more advanced care) and luckily I had an appointment with new oncologist at Memorial Sloan Kettering on Day 10 after my c-section. This new oncologist would not give me a timeline of survival and only told me that no one could know how I would respond to treatment or what would happen. She said she would only do her best for me. So while she was pragmatic, she gave me hope back. It would have been simpler for me to go to a doctor/facility here in NJ but I thought that the inconvenience would be worth it.

You can click on the usernames and read more information about individual's histories. The net of mine is that it has been 2 years and 4 months since my last treatment and I am 2 years and 8 months NED (no evidence of disease). My little one is a fun and loving 3 years and 3 months. My next scan is next month so hopefully that will mark 3 years clear.

My advice would be to make sure your daughter is being treated at an NCI hospital. It can make a difference. Also, surgery is considered the "gold standard" for treating liver mets and I would push that treatment option. Location is everything when it comes to surgically removing liver mets, but make sure her surgeon is a hepatibiliary surgeon and not a general surgeon. I have had success with a treatment called HAI pump (knock wood) which was an implanted chemo pump directly into my abdomen to help prevent future occurrence.

Also, I remember when I was first diagnosed my family members would all say, "It's going to be ok, you're going to be alright." That really bothered me as I would think, "How do you know?" Their comments didn't validate my fears and it made me feel like I couldn't say anything to them. So think about how you are with your daughter. "I know you're scared. I am too. But we're going to get through this together." That's what I wish I had heard back then.

"Turn your face to the sun and you cannot see the shadows." --Helen Keller

I keep you family in my thoughts,
Amy

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

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

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

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

Sdp

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

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

Sdp

NJC
Posts: 72
Joined: Nov 2010

Contact Dr. David Bartlett, University of Pittsburgh's Hillman Cancer Center, immediately and asked to speak to him about his Oxilaplatin Isolated Liver Perfussion and HAI pump trial. He's the best in the business. He's studied at NCI, Penn, MD Anderson, Sloan. In fact they often refer patients to him for treatment.

My wife was diagnosed Stage IV (18m ago) five months after the birth of our son at the age of 33. She had 20 tumors in her liver. Both he and the Oncologist (Nathan Bahary) are still aggressively pursuing a cure. She had very good success with the purfusion and HAI pump. If fact, she was non operable prior and just had surgery to remove segments 2 and 3 of her liver, along with RFA on some additional tumors, and removal of her aortic lymph nodes. Other than the pain of recovery from the surgery, you'd never know she was sick. In fact, the Oncologist told us a bit ago she's done better than he'd ever imagined. Neither are debbie downers unless it's warranted - very important! Will she beat this...only time will tell, but she's getting the best shot because of her attitude, as well as the support and care from Drs. Bartlett and Bahary.

-Joe

Goldie1's picture
Goldie1
Posts: 264
Joined: Sep 2011

I am so sorry to hear about your daughter. My husband was diagnosed last June as stage iv with mets to the liver. I can't even begin to tell you how amazing his oncologist is and how he has helped both of us physically and mentally. If your daughter is willing...find a new doctor!

My husband is not ready to come on here either but I relay a lot of the information posted and it helps him just as much as it helps me.

Take care,

Ellen

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

The negative oncologist has done his job - an ice-cold-water-in-the-face wake up call, it's a deadly serious case that needs real experts and innovators. He's done. I would start looking for surgeons and oncologists that can draw outside the box. I think the HAI pump is very worthwhile following up. This includes some alternatives too. We decided we wouldn't miss cimetidine and parts of the LEF protocol (and more), before, during and after surgery, for anything. Adding innovative adjuncts to (foreign approved) chemo has paid off for us, big time.

The biggest pieces of information (not yet "standard [sheeple] medicine") that were missing for us first surgery were CA19-9 blood testing; CA19-9, COX2, iNOS, and CSLEX tissue staining; and chemosensitivity testing with fresh, live tumor cells. These kind of tests in informed, skilled hands are the literal investments of a lifetime. "informed" will only be a few percent of the drs, so you have to be persistent.

Cimetidine and neoadjuvant supplements before surgery annihilated some of my wife's mets (mesenteric invasion and possibly 1-2 in the liver).

Since chemosensitivity test arrangements need to be made before surgery (sample kit for hospital and arrangements) that is a "call now" priority if you are interested. Weisenthal Cancer Group, 714-894-0011 and Rational Therapeutics, 562-989-6455, are the two biggest guns in the business, both in California.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Lots of good suggestions here, and what becomes clear is that you can get off this horse and onto a better one. There are many oncologists out there....no need for loyalty to this one, and besides that, you and your daughter don't need the additional stress of his attitude.
Just an interesting side note: Some scientists believe that inflammation plays a huge role in the development of cancer. I was dx with Stage 3 cancer three years after the birth of my twins. I'm wondering if some women--IF we are prone to the disease---have some sort of trigger that's activated by the stress of childbirth.
Just a theory....
Anyway, I wish you nothing but good luck and godspeed in finding a compassionate new oncologist.
Welcome to the Board :)

wolfen's picture
wolfen
Posts: 1329
Joined: Apr 2009

I also want you welcome you to the most caring, informative site in the world, IMO. I am Wolfen, mother of Johnnybegood, who is a cancer survivor and member here also. I can identify with every emotion you are feeling, especially the one of helplessness. Johnnybegood was diagnosed in late 2008 at age 44. She has been through many radiation and chemo sessions with terrible side effects. Some do not experience these side effects and tolerate chemo well. She had colon surgery, temp ostomy, reversal surgery, and more "mop up chemo". She then became NED and was clear for about 18 months until ct revealed several liver tumors and a few lung tumors. It was back to chemo again to shrink those tumors. In Sept. 2011, she had partial removal of liver. The liver is a wonderful organ in that it will regenerate, in case no one has informed you of this. In early Feb, she had RFA procedure on a new liver tumor. The lung tumors appear to be shrinking and she will resume chemo next week.

So many here have advised you on a most important issue regarding treatment. Please make sure her "team" is fighting for and alongside her. Johnnybegood's original onc was an airhead in the greatest sense. She has retained her original, very fine, surgeon who teams with an onc, nearby. They are in constant communication regarding her treatment.

One of our most important quotes here is "Never Ever Give Up".

As a devastated mother also, I will be here to support you in any way I can. Many other members will also be able to answer a lot of questions from the patient's point of view, regarding various treatments and help with side effects.

Take Care,

Wolfen

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Thank you so much for your kind and thoughtful responses. Such a wealth of good information, good advice... and exactly what I would love to do - find another oncologist. But here is the problem: they love him. He is so kind and caring and he is the one who diagnosed her and got the ball rolling immediately. And he has prescribed everything so far and it is working. And the cancer center is five minutes from their house and close to their babysitter. And her surgery is scheduled and she really likes the surgeon and from all reports, he's very good. And she has bonded with her infusion nurses and loves it there. I could go on and on... the doctor tells her she is doing well, looking good and "exceeding my expectations." She says he is not a "rainbows and lollipops" kind of guy. She feels he genuinely cares about her, and I do, too. But like several of you, I am afraid he might be projecting his own fear and disillusionment about his own disease onto her. He is stage II and had a local recurrence. He did not mince words when speaking to me about what he believes is her prognosis. He admitted he would not say that to her, that he "tries" to be positive with her.

I am so hurt and crushed and heartsick. I talked to her today and asked how she is and she said "Great!" They have company, plans for dinner, she's doing well. I just don't know what to do. I absolutely will not tell them at this time what he said to me. That would break her heart and spirit. I just know it would. She has been able to keep her fear in check for the most part and focused on the job at hand (treatment) and enjoying her little baby and I don't want to send her into a panic such as I'm in. If only I could just make it better for my little girl...

So here is what I am thinking. I am going to send my letter to the doctor and tell him to get on board with the rest of us with plans for her to live. I started telling him this when we had our conversation and he was listening. I am going to be nice but firm. I know the treatment she is getting is working (Folfox) and she is doing well managing the side effects and he's been very helpful and available day or night, even gave her his personal cell phone number. He has told them that his goal right now is to get the colon tumor out, resume treatment and "concentrate on the liver." Right now, everything is going in the right direction and from what I've read, what she is getting is the standard.

I would love to simply tell them to drop him and find another oncologist. But he is good, has a reputation for being good, and is associated with a well respected cancer center. But to tell them to drop him, I would have to tell them what he said. I will not do that at this point. I am thinking that if things change or he starts feeding her negativity I will do it in a heartbeat. I wish he had not said that to me.

Please tell me what you think of this idea. I am listening to everything you say and taking it all in. Thanks so much and kudos to all of you for handling this beast in such a positive way and reaching out to others to share your knowledge. MY plan is for my daughter's liver to become operable and for her to reach remission and stay there! You guys are reassuring me this is a possibility and for that I am so, so grateful.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I don't blame you for not telling her what he said, never doubt a mother's instincts.
We're here for you.
Winter Marie

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

and welcome to the board. Judging by your latest post, it appears your daughter is very satisified with her doctor. It also sounds like he has a very solid plan for treating her cancer. It appears the treatment she is receiving will be the same even if she changes doctors. You might suggest to her that it is wise to get a second opinion but ultimately, the decision is hers to make. If she is pleased with her doctors, doing well with the treatment, at a good cancer center and has a good treatment plan lined up along with a good attitude then changing mid stream may or may not be a good idea at this point in her journey. Sometimes us care givers need to take a step back (at least I did) and let the patient call the shots. Keep in mind this is a marathon and not a sprint and a long process. I have learned as a caregiver you just can't concentrate and talk cancer 24/7. As far as a doctor's demeanor/personality, I could care less about that, it is their skill and knowledge I am after.

Take care - Tina

chrissy83's picture
chrissy83
Posts: 17
Joined: Oct 2010

Hi,

I am soo sorry you are going through this :( It brings tears to my eyes as I know my mother is going through the exact emotions you are.. I was 5 months pregnant when I was diagnosed at the age of 27 and I also had a 6 month old baby boy at the time that was 2 years ago.. I had stage 3 rectal cancer and it has now progressed to stage 4 but I look and feel great.

I had to have the operation whilst 20 weeks pregnant after I refused to have an abortion.My baby girl survived the operation, chemo and being born preemie at 31 weeks. I was also diagnosed with blood clots in my lungs whilst pregnant and going through chem and had to have an ivc filter inserted..

This has been an absolute nightmare to say the least but the thing that keeps me going is my babies.If I didn't have my two babies I would have probably crumbled into a heap and given up. I know exactly what your daughter is going through but she has to remember there are people who are stage 4 who survive this.

I am doing chemo but I am also doing natural supplements and vit C iv but this is because the chemo didn't work for me the first time. The only thing that we have is hope so please don't lose hope and don't let anyone give you an expiry date.Nobody is god. I have hope and everyday I get to wake up and see my babies is a blessing.

Please if your daughter needs someone to talk to Iam more then happy to talk as I was in this exact position.... Just keep on fighting :)

Chrissy

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

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!!!

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

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.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Actually if you stopped talking about it, I don't think she would think you didn't care or were sweeping it under the rug.
When I call family or they call me (once a month or so)the first question we ask of each other is "How are you", my answer is normally, "Just fine", and nothing more is said, they know if I want to moan or discuss it, I'll bring it up.
For the most part, what I want to do, is fun things, things unrelated that bring joy to those around me, things that leave wonderful memories for them, like when my daughter came from Ohio for a visit and we all went to Fisherman's wharf in San Francisco, I insisted that we all get a picture taken together that they do with the Alcatraz prison in the background. As they said smile, I blew my cheeks up, widened my eyes as wide as I could get them and was a plain goof!!!
No one saw until I insisted that we buy the pictures, I got one for each of my children and for my husband, they were SHOCKED to see their goofy looking mom, laughter rang SUPREME, those are the moments that are precious to me with cancer looming over, the laughter, the love, the surprises in life, memories that I can give, that will cause a smile on their faces when I am long gone. And perhaps that is why your daughter wants to do fun things totally unrelated to cancer, perhaps in her mind she realizes she doesn't know which way this cancer is going to go, and she wants to leave beautiful and fun memories for those that may be left behind someday, or even better in my opinion (or my case)that we realize that life is more precious suddenly and want to do the things that mean the most to us in our minds and hearts.
So a "Hi, how are you honey", I think is always fine to ask, but if she says "fine", leave it at that and go about having fun.
I know the heartbreak my Mom had after I told her I had cancer, and my one saving grace was that before she passed away last year, I had No Evidence of Disease at that point, and that gave her the greatest happiness. So dear one, our hearts do indeed break for you; the mother, we realize your pain.
Winter Marie

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

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

chrissy83's picture
chrissy83
Posts: 17
Joined: Oct 2010

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

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

I needed to hear this.

abrub's picture
abrub
Posts: 2158
Joined: Mar 2010

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.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

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.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

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.

mom_2_3
Posts: 965
Joined: Nov 2008

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!

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

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.

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

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.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

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.

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

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.

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