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New here and have a few questions

melissaincali's picture
melissaincali
Posts: 34
Joined: Sep 2009

Hi everyone,
I have been reading the board for the past few months and have found it to be such a supportive environment. Therefore, I wanted to introduce myself and stop lurking. My husband got diagnosed with Stage IV rectal cancer in January at the age of 34. We have a 3 year old son and were planning to add to our family, but plans quickly changed.

He was initially diagnosed at Stage IV because of a rib metastasis. In the spring, he had another scan right before his resection surgery and it was a horrible shock to learn that it had spread to the liver in the 6 weeks off of chemo/radiation prior to the planned surgery. Unfortunately, we are looking at 20+ tumors in the liver and he is not resectable. He just changed from Oxaliplatin to Ironitecan last month after it was found that the liver tumors were growing again.

We are headed to Memorial Sloan Kettering next week to have the HAI Pump installed. We live in California and will be in New York for about 3 1/2 weeks or so for the procedure (or so we are told). I'm trying to prepare for this big change and wanted to ask those who have had the HAI pump a couple of questions: How long were you in the hospital? How long after you were out of the hospital did you start feeling able to move around and feel back on your feet? How difficult do you think it will be to have our 3 year old around during this time? My husband, Brant, really doesn't want to be away from him for long and I want to be there with him...so we are bringing the little guy to NY.

We are lucky to have friends in the area who will help with him and grandma is coming out to help as well, but I am still worried. Our son, of course know that daddy is sick, but this will be the first surgery that Brant has had and I am nervous about how William will handle it at his age.

Anyways, thanks for any comments/advice!
Melissa

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

And welcome to our family, Your hubby sounds like he has what I have, but I have Stage 4 with liver mets, and also inoperable, and wondering if I should get a second opinion over at Sloan Kettering, and see how the pump works for me as well, my onc doesn't think it would do much, but I want these taken care of.

I am also on Ironetican, the Folfiri with Avastin chemo, and it has shrunk my tumors down, I don't know how much though, I have never even seen scans of my liver, you're lucky to get there, I'm planning on traveling I believe, but now I have no clue what to do with my kids if I have to stay there for a few weeks either, I do have family there on Long Island, but want to stay somewhere closer to the hospital.

Will you be getting treatments still in Cali, with the pump? I wonder if my hospital would even know what to do with it, but am interested to see if I would be a candidate for it as well.

There are a couple people who do have the pump here, but just wanted to say Hi, and welcome you aboard! They should be chiming in soon!

Hugsss!
~Donna

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

HI Melissa, I'm so sorry to hear about your husband. Generally, from what I've read, rectal cancer spreads, first, to the lungs. Spreading to a rib from the rectal area seems quite odd. I read some posts on www.colonclub.com about bone mets but they all were either to the sacrum (tail bone area) or spread after going first to other organs.

We have several people who have had the pump implanted. I know Phil has and I'm sure he'll jump in as soon as he sees your post. He's a great guy and very helpful. You might do a search for HAI Pump off the thread page.

Several members have very young kids and I'm sure they'll add their thoughts. I just wanted to welcome you and offer my prayers for your husband and family, if that does not offend you??

Wishing you only good reports,
Diane

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Melissa,I am really sorry to hear what happened to your hubby.I am sure phillieg(phil) can answer your questions because he has been having that pump in his body for a while.If he doesn't see your post,you can send him a private message at csn home,click on new mail,then write a new message to phillieg.You are in my prayers and hope your husband's treatment will be going very well.Take care.Best luck and best wishes to you and your family with everything.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Melissa.

Just wanted to say hello. I can't really give you the advice you seek, but I do want you to know that I'm very sorry about your husband.

I will pray that he gets some good advice and improves soon.

*hugs*
Gail

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

I don't have a HAI pump, so i can't help with your questions, but i just wanted to offer a big WELCOME TO THE BOARD!! I'm sure you'll find all the answers you need here!

Hugs,
Krista

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Hi, Melissa,

Are you sure you have to go all the way to NYC for that? I don't know what part of CA you're in, but Stanford has to be closer no matter what. Or the UC system as well. UC San Francisco has an impressive array of resources, as does Stanford. My partner (johnsfo) has done both Oxalyplatin and Irinotecan and neither was a real cake walk, but they were very different in their effects on him. I can give more detail if you want it.

Also, I feel like a commercial - I've posted about it, but if you missed it, I just finished a great book about tackling cancer head-on as a couple by a husband and wife. The book is The Power of Two by Gerri and Brian Monaghan. It includes a really thoughtful and useful list of 50 tips for caregivers and I wished I had had it at the beginning of our weird little cancer journey. It's on Amazon for about $15 or so. It's also funny in parts - not heavy like you'd expect.

Sending you strength and tenacity,
Adrian

melissaincali's picture
melissaincali
Posts: 34
Joined: Sep 2009

My husband is actually a physician at Stanford. They do not do the HAI pump. Apparently, there is a specific doctor at MSKCC that has been getting excellent results with the pump that are much better than at other locations or with other doctors. Anyways, we got connected with her so I think that is his best shot.

It is difficult to decide what to do when different doctors have such different opinions on treatment. It also adds a layer of difficulty when many of the physicians are friends of my husbands and so desperately want to help. At Stanford, they are focused more on SirSpheres which is another option to target the liver. However, the pump can't be done after SirSpheres so we have decided to try the pump first.

I'll definitely check out the book. We have gained a lot of information from a book called the Anti-Cancer Diet which really changed Brant's diet. It is nice to talk to another caregiver. It is hard with a little kid and very exhausting. Trying to take care of them both has been really hard at times. My son hasn't been sleeping well recently which means I don't get to sleep through the night either...which has made everything even more tiring. We have wonderful friends out here, but not family. This week in particular, I feel a lot is riding on me getting everything done before we spend a month in NYC. Brant has chemo on Monday, so he is unable to really help get our lives organized for the trip.

I just keep telling myself that every day is a gift and try to push on through.

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

Our care has been through Stanford and has been excellent all the way. I know about the lack of sleep - it's a tough one. Let me know when you get back and maybe I can bring some food over so you don't have to think about cooking when you aren't up to it. We live in SF, but that run down 280 has become second nature.

I can only imagine the added difficulty of trying to explain all of this to a 3-year-old and take care of both of them at the same time.

My heart goes out to you. Feel free to PM me too anytime if you want to.

Get out of NYC too if you can - I grew up in the east and I miss this time of year more than anything. If you want ideas for quick little day trips, let me know.

Good luck out there -
Adrian

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Melissa,as a caregiver,I truly understand how you feel.Me and my husband don't have child,so at this point I feel lucky because I only need to take care of my husband and everything at home.But truly speaking,these things already make me very exhausted especially those days staying hospital after surgery.We are both new to where we live,so we don't have any friends and family close by either,but I find lots of comfort and friendship on this discussion board.You are right,just please focus on the things at today and take one day at a time,things will get better.My husband have finished the preoperative chemo and radiation plus surgery,he is doing better and better,tumor was gone and pathology report came back good down staging him from stage2 to stage1.Next step is adjuvant chemo possibly at the beginning of Nov,at least things are moving to the right direction.I found it is really helpful that we take one day at a time,don't push,things will finally fall into the places.Anyway nice to meet you and best luck to your hubby with his treatment.Take care.

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hi Melissa:

I'm sorry to hear about you and your husband's journey. It sounds like you are doing great at keeping up, but I'm sure it's difficult. I'm not a caregiver but a PLWC. Like your husband I have extensive involvement in both lobes of my liver, therefore, making surgery not an option. I have mentioned the pump to my oncologist and he wants to wait before we try that - he also mnetioned that I could get it done somewhere else than NYC - I am in Louisiana. I've already been on all of those medicines, Oxali, Irinot, Avastin - am just getting going with Xeloda and Avastin. The pump may be my next option. I have had a consult regarding the radioactive shperes - they do those where I am. I will be following your updates as I am interestered in hearing more about the pump. Take care and I hope this treatment will work on your husband's liver. The two of you will be in my thoughts and prayers. Take care. Roy

mom_2_3
Posts: 964
Joined: Nov 2008

First of all regarding your questions:

How long were you in the hospital?

I was in the hospital for 8 days. My color and liver resection and HAI pump implantation were done on Friday. I left the following Saturday.

How long after you were out of the hospital did you start feeling able to move around and feel back on your feet?

I walked around hunched for quite some time after the surgery but I did have more surgery at the time than I think your husband will have (I am assuming that he had the colon surgery done). At about 2 weeks out from surgery I was feeling pretty good with respect to my physicality. At my appointment to remove my staples (about 35 - 40) I made sure to wear my tight jeans and high heels to the office. I stopped taking my pain meds (overnights only) at about 3 weeks. Since I had a liver resection done my full energy didn't come back until a few months after my surgery but again I don't think your husband will have to deal with that at this time.

How difficult do you think it will be to have our 3 year old around during this time?

I personally feel that having your son around will be a blessing to your husband's recovery. I missed my children so much while I was at the hospital. The area in the abdomen where the pump is placed will of course be a bit swollen as well as a bit sore so as long as you can manage to keep your son away from that area you should be ok. I was not supposed to lift anything over 10 lbs those first 6 weeks. Now, however, the liver pump provides a convenient "shelf" on which to carry my youngest...

I wish you all the best on your upcoming surgery. You are in excellent hands at Sloan and the oncologist you are seeing (who is also my dr as well as Philieg and AdKer's oncologist) is one of the tops in her field. It is of paramount importance when doing the pump placement that the surgeon has done numerous placements as it is tricky. Additionally, the management of the liver enzymes and treatments is also critical and your husband's oncologist knows HAI therapy better than any other doctor, hands down. As you mentioned in your last post, she has had great results with the treatment protocol. I remember at a meeting with the first oncologist I met that he referred to her as "that pump lady" almost derisively when I mentioned we would be seeing her for a second opinion.

You didn't mention who the liver surgeon is going to be. I am interested to know so if you can PM me the name or post a link to a google search page, that would be great. I will be at the 53rd outpatient facility on 10/26. Perhaps we can meet you then.

All the best,
Amy

mom_2_3
Posts: 964
Joined: Nov 2008

Melissa,

You can search for "hepatic" on the board and get responses. 3 character searches like "hai" don't work. I found some other recent threads that you may find interesting:

http://csn.cancer.org/node/174161

http://csn.cancer.org/node/176241

http://csn.cancer.org/node/176707

http://csn.cancer.org/node/172274

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Melissa,

Welcome to you and your family. We found out about my husband's colon cancer in January of this year as well. As you know there are so many ups (blessings from family and friends) and downs during this time.
You asked about your little boy (who is very, very cute). When Dick went for his surgery in California (we live in Hawaii) we took all 4 of us. We took our 14 year old out of school for the first 12 days of her second semester of her freshman year and sent her back to Hawaii after Dick was good enough to see her in the hospital. We also brought our 12 year old who has some serious special needs. We felt that we all needed to be together. Both grandma's helped out and I called in my aunt as well. Even though traveling with her is difficult, we needed to be together as a family. I slept at the hospital with my husband 6 out of 7 days. I had to believe the grandma's could take care of our 12 year old. I think it will be good for all of you to have your son around.
Please let us know how it goes.
Best to you and your family.

Aloha,
Kathleen

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

So sorry to hear about Brant's diagnosis.

I haven't had the "pump" so can't offer much in the way of experience. I hope your travels to New York City are fruitful.

I can't imagine either of you wanting to be away from your William for that long. He will help to pull you back from falling into the abyss of "cancer" and be a constant source of "unconditional love" and "healing energy". Kids are far more resilient that we give them credit for these days. Having Grandma will certainly allow you the time you need to tend to the medical side of things.

I hope the trip goes well and that the procedure is effective.

Rob; in Vancouver

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Sorry to hear about your husband. I hope all goes well with your trip to MSK.

I cannot add to any pump questions but I can share with you about the whole kids issue. My sister had a baby during her cancer ordeal in 1992 and we, as a family, all took turns going with her to have chemo or her fluid drained so we could help with the baby because it was very important to her to have her baby girl with her at all times. Babies are such a healing energy. This also relieved her husband of always having to feed or diaper her. That baby girl had more "nannies".

Fast forward to my diagnosis in 2001 and I had 5 kids with the youngest being 21 months old. It was a happy day when my friend drove my kids down to Mayo to see me post surgery. I was probably the only woman on the cancer floor who was pumping her breastmilk! HA! :-) Having my children an integral part of my healing was important too (I could have done without the teenager angst though--but that's a whole 'nother story). I understand why your husband wants your son there, and I understand the concern about having to care for your son and your husband. Hopefully Grandma can become primary caretaker of your little guy while you transition into becoming primary caretaker of your big guy. Your 3 yr old will show you somehow how much he can handle while he takes his cues from you.

Make sure in all this, you take time for you. Easier said than done I know.

I hope you'll keep us posted on your journey and best wishes to your husband on his.

My background: Stage III sigmoid colon cancer--lymph pos/zero mets. Opted to NOT do any adjuvant chemo and healed post surgery with diet and Eastern Medicine modalities. Eight years cancer free and no recurrences! :-)

Beating Cancer with Nutrition by Patrick Quillin
Spontaneous Healing by Dr. Andrew Weil
Crazy Sexy Cancer Tips by Kris Carr
Prescription for Nutritional Healing by Balch and Balch (I feel like I'm spelling their name wrong?)
A Cancer Battle Plan by Anne Frahm

Just some suggestions that were highly helpful to me

peace, emily

ps. My BFF lives in Menlo Park right near Stanford.

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