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One year ago today

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I haven't really had time to post much in a while but thought I'd give you an update on my daughter's situation. For those who don't know me, this is the story: my daughter (my only child) was diagnosed Oct. 10, 2011 with stage IV colon cancer with multiple tumors in her liver. Age 32. Nobody has really said how many exactly, and she has not wanted to know. They were inoperable. Her CEA at diagnosis (drawn the week before) was nearly 3,000 and went up to 6,800 over the next 10 days when she was in the hospital having a temp colostomy put in and a colonoscopy, port and IVC filter installed, etc. Her first (only) baby was 6 1/2 weeks old when she was diagnosed. It was a nightmare.

She immediately began Folfox and in December started radiation. She did not get Avastin because she had blood clots in her legs. Her CEA started dropping and she had a good response to the treatments. She had LAR of the colon tumor in February. Right before stopping it for the surgery her CEA had stalled and started creeping up. So the doctor made the decision to start Folfiri plus Avastin after she healed from the resection.

Her oncologist has been negative from the start, not so much to her but he didn't mince words with me. Basically, he had no hope for her beating this. After a long letter from me he set us up with a liver surgeon, probably thinking he would confirm "inoperable" and send us on our way. The liver surgeon recommended Theraspheres to try to shrink the tumors to operable. So he sent us to the interventional radiologist. This was all a well-respected cancer center, now with NCI designation. She had the most tumors in her right lobe and they did Theraspheres on it first, on May 25. Then she had the left lobe done on June 27. We were told she could have them again if the first time did not work, and the goal would be eradication of the liver tumors so that she would not even need surgery.

She had a follow-up scan in early August and got a call from her doom-and-gloom oncologist that he had been contacted by the IR and told it worked on the left lobe but not the right and that there was tumor growth on the right. Her CEA had gone up during all this and the oncologist decided the Folfiri was no longer working, so he stopped the treatment. In a phone conversation with my son-in-law he confirmed he was ready to tell her there were no other options. Then, to top it all off, my son-in-law was at a local casino with his dad and other relatives celebrating his dad's birthday. He ran into the interventional radiologist there who told him the Therasphere treatment did not work but he could give her the spheres again to try to "buy her some time." Needless to say, my son-in-law was devastated.

So... we were in panic mode and didn't know what to do or where to go. My son-in-law had called me about what the doctor said and we cancelled the appointment with him and decided to not go back. I called the liver surgeon's office and begged him to get us a referral to the colon cancer "guru" oncologist there at the cancer center. (My daughter's oncologist told us her waiting list was too long, we'd never get in.) And I called the Cancer Treatment Centers of America in Tulsa - I know several people who have been treated there successfully when told around here "nothing more can be done." And they got us right in. My daughter had missed one Folfiri treatment, the week before, because the oncologist had stopped it and we ended up cancelling that appointment anyway.

The new oncologist at CTCA ordered blood work and we learned her CEA had dropped considerably, so the Folfiri had NOT stopped working. AND they told us that she was a candidate for Erbitux, which had never been mentioned. My daughter and her husband had wanted to go to the oncologist visits with just the two of them, so none of the rest of us ever went or got to ask questions there. Also, at the CTCA, several doctors told us that it was way to early to make the determination that the Theraspheres did not work, and that they never use CT to assess after spheres because tumor swelling from inflammation can look like "growth." This is the same thing that Suzanne Lindley of Beat Liver Tumors had told me. They immediately got her back on her chemo, Folfiri, and added Erbitux.

So... she had 3 treatments at CTCA and I went with her for this last visit (4th) and her CEA after 3 treatments was down to 85 from 800. And she is doing so well - they have done several different things for her - accupuncture, physical therapy, massage, naturopathic meds, pain management, treatment of her neuropathy, etc. - and her appetite is back to normal after a YEAR and she is gaining weight, looking great, and off all pain meds and sleeping meds. She is active and energetic and cooking and shopping and doing everything she could not do. We'll see what her CEA is this time. She is healthier now than she's been since before the baby was born (we didn't know what was wrong with her yet, thought it was the pregnancy).

At CTCA they plan to give her 6 chemo treatments, then at the 7th visit they will scan to see where we stand. I am thinking it is going to be very good news. I can't tell you how impressed I am with the Cancer Treatment Center of America and how glad I am that we went there. I had been skeptical about it - the commericals and all. The whole experience has been life-changing for my daughter. I know it is such a controversial subject on the boards. Yes, it's for profit. It's not a teaching facility. Everything has been covered by her insurance, just as it was before.

I had previously contacted a doctor at the NCI comprehensive cancer center in our state who does HAI and he was going to see my daughter. But in setting this all up I talked with his assistant who told me they had never brought someone to operable with HAI and only used it to "buy time." So, that was out of the question. I know Dr. Kemeny at MSK does it with curative intent for some patients. We have still not ruled out contacting her. The people I've met on this board and Colon Club who've had great success have had liver resections and HAI pump installed. We will regroup after this next scan and decide what next.

But today I'm just happy she is doing so well. She is back to her old self - energetic, assertive, having fun and doing all the things she hasn't done for well over a year. She was so sick at this time a year ago. I was terrified of where we might be a year from then. A year ago today Oct. 10 I got the call from her, "Mom, I have colon cancer." And our lives were forever changed. It's been a grueling year. Today I got a call from her: "Mom, you should see all the things I just bought at Joann's! I spent too much money but hey, I saved $40!" She was happily decorating the house for Halloween and planning dinner for company tonight. They are having a ball getting ready for their baby son's first "real" Halloween so they can dress him up as a Tiger, show him off and eat his candy!

I've learned not to look too far ahead. We are planning for her to get well. People do, you know. I firmly believe that if you don't have hope, if you go with the statistics and decide that whatever you do, this disease is going to win in the end anyway - it will. So we have decided that it is not going to win.

All of you here have been such an inspiration to me - letting me know that this disease can be beaten or can be managed and that you are fighters. There is not the doom and gloom here that was forced on members on another forum by a member who wanted to be sure everybody with stage IV understood they were doomed from the get-go, as she believed she was. I do not believe in extinguishing hope. It serves no purpose. I backed away from the boards after reading some of the negative stuff and being terrified enough already. But I hope to get time now to get back into it again.

I wish all of you well and I'm thankful you are sharing your experiences here on CSN. You have helped save my sanity.

Sandy

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Sorry that was so long!

Sandy

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Sandy, that's an amazing story! I pray for continued good health for your daughter.

*Hugs*
Gail

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Just so happy to hear that your precious daughter is doing much better and has found a team who actually cares. A person should always be aggressive when it comes to treatment because so many medical professionals don't give a dam#.

JBG is still fighting the low platelets. Her onc and staff give her conflicting instructions on a daily basis and leave her totally confused. Her onc conveniently does not have an answering service for emergencies so she's pretty much on her own. I do not get good vibes about him or his methods and would probably "shop" elsewhere as you all did. Right about now, she's hanging on to Buzzard's rope for dear life.

Our nightmare has been going on for four years now and I'm still looking for that ray of sunshine.

Hoping your daughter continues to improve.

Luv,

Wolfen

jen2012
Posts: 1195
Joined: Aug 2012

I'm glad she's.doing better and finally getting to enjoy her sweet baby. I hope it continues for her!

Lovekitties's picture
Lovekitties
Posts: 2933
Joined: Jan 2010

I am so very glad to hear that your daughter is doing so much better.

As you have found, each of us has to look for the best fit when it comes to medical treatment, and I am glad you all found it.

It is most important that our doctors have the same mind set that we do when fighting this disease.

Wishing you and the young family the best and continued improvement for your daughter.

Hugs,

Marie who loves kitties

marbleotis's picture
marbleotis
Posts: 485
Joined: Mar 2012

Sandy - so glad to hear about your daughter doing much better. Your story is a shining example of questioning the doctors and being your own health advocate. All the best - keep us updated.

Sundanceh's picture
Sundanceh
Posts: 4282
Joined: Jun 2009

Just wonderful, Sandy...it's good to know that CCTA has been a help to all of you.

Teaching hospitals are "for profit" too...I've often found that it costs more than a cancer clinic...my chemo bills alone were 35K...every 2 wks...medical care of any kind is not done of an altruistic nature...it's just good that she got the care that she needed and has responded so very well. It's good to know that their facilities are an option for others to consider from your testimonial.

Great story and so happy for you all!

Nice post:)

-Craig

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

It was a wonderful post and - no - not too long. You told your daughter's story well. I'm so pleased she finally found the right place for her and her situation is getting better. As I read your post I couldn't stop thinking that your child is going through this while also dealing with the joys and challenges that come with a new baby. I hope the baby is bringing your family good moments in what was undoubtedly a challenging year for you all. Best wishes for you, your daughter and your family.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Her oringial onc was really bad...he shouldnt be in this business. There was so much he could have done. I'm so glad you all fought and found other solutions. Just imagine how many other stage 4 patients just gave up because the onc didn't think it was worth it. I am dx stage four over 3years ago but have been fighting it. There are good times which you cherish and bad times you fight through knowing there will be good ones coming. I will pray your daughter will have lots of good days. Jeff

scared99
Posts: 73
Joined: Jun 2012

That is an awesome story !!!

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

that was NOT too long. i am glad you gave us complete info. oh my. what a horrible ride you & your family have been on. 32. so young. but the great news is look how she is now! i will pray for you & your family for continued improvement & for ned. i know it will be a journey but have faith & know alot will be praying for all of you! so glad to hear outstanding good news. enjoy halloween!
hugs
judy

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you, Gail - we appreciate the prayers!

Wolfen, thanks for the support - I'm sorry your girl Johnnybegood is still having the platelet problems. I'm like you - that oncologist not having an answering service during off hours is a red flag for sure. I can't imagine that! Even my daughter's doom and gloom onc had an answering service - plus he gave her his cell phone number and was personally available all the time. He said he wanted us to call him so he could take care of his own patients. I hope you and JBG get that ray of sunshine soon.

Jen2012 - thanks for the support! Her baby is now trying to take his first steps - exciting times for them and she is enjoying him so much.

Marie who loves kitties - I love kitties too. My name here - Varmint - is our most recent acquisition and the 5 is because she was pet #5 to move into the house with us. 2 dogs, 3 cats - all rescues. Varmint showed up on our back porch as a tiny kitten and climbed my husband's leg and stayed on his shoulder. We put food out and she kept claiming him, so he got to name her and she moved in. Thanks for the good wishes!

Marbleotis - thanks for the support and I'll keep you updated.

Craig - thanks! I'm glad you liked my post. I'm like you - I get to pounding those keys. I just didn't know about CTCA. My daughter thought it was a place for the desperate, a last resort. But we've met a lot of people there who went there first for their treatment because of recommendations from other people. That's also why we went. It's a whole different vibe. And everything is done right there, no driving to this specialist and that specialist and to different facilities for different tests or procedures. Love the facility, love the people, love the optimism and even love the cafe - great food, cheap! Volunteers everywhere, music and activities for patients and families all the time. Amazing.

YoVita - thanks for your nice response! Yes, that baby boy has been a joy in the midst of all of everything and kept all of us focused and smiling. And he's gotten to spend lots of time with his grandparents and other relatives, which we love, love, love - and he's so sweet and good natured, and that's made it so much easier.

Jeff - thanks for the support - I know that you have issues of your own right now and I'm praying for you, too. Yes, her oncologist turned out to be a bit of a downer. I think a lot of his problem was the fact that he is also a colon cancer survivor with a recent recurrence. But she liked him so much. But we've moved on and I'm glad.

Scared99 - thanks! I hope you will have an awesome story too. I wish that for everybody here.

Judy - thanks! Yes, it is certainly a journey, as you well know. I'm so happy for you on your recent good news that I just read! That's wonderful! Those doctors don't know everything.

All of you are wonderful and so supportive. I wish all of you the best and appreciate so much your sharing of your experiences and knowledge with me and everybody here.

Sandy

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

So glad to hear! It's so difficult to decide what to do, but you've got to be proactive and you've found the right path. I can hear the joy in your keystrokes!

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I was responding to you just as you were responding to me! Thanks! Yeah, my fingers are dancing on the keys to the tune of "Don't Stop Believin"!

Sandy

herdizziness's picture
herdizziness
Posts: 3397
Joined: Apr 2010

Posts like yours are NEVER too long!!! It's so wonderful that you found a place that your daughter can get the care that she deserves (and if it includes acupuncture and massages, even better!)by an oncologist that cares. No matter where you go, the oncologist that cares is the most important part of the process I believe!!!
I feel that it must be extremely difficult to be the parent of someone with colon cancer, Stage IV, nonetheless, how terrifying it must be (you and wolfen are both in my heart over what you must be going through)to hear the words that your child has cancer. You both are amazing on how well you deal with it, proactive for your children.
May many, many, many more anniversaries be heralded on her successes!!
Winter Marie

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

And many, many, many more anniversaries for you yourself. Sounds like you are headed for NED again with the plans in place. We will hope, pray and plan for that for you!

Sandy

tanstaafl's picture
tanstaafl
Posts: 959
Joined: Oct 2010

Congratulations on that hard year's progress and successes.

Personally I think "standard" waits too long, for too little, too late. Success should immediately combine with or follow success rather than waiting for failure first. Hence contacting Dr K about HAI sooner, may maximize the chance of curative surgery.

Multimodal (combined surgery, targeted chemo, nutrition, immunological, rad) treatments are where hopeless can become NED. Eclectic is selecting the best parts.

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Thank you for your post... It helps ease the uncertainty of this disease ... In reading the stories of other patients. It is so hard being a mommy and having to go through this. I have 2 children ... I have had my moments when I have been so scared for them.

Alex

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