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new mother recently diagnosed ....where to begin?

B312C
B312C Member Posts: 16

I'm the husband of a lovely 43 year old brand new mother who thought her symptoms were the lingering effects of a c-section. The primary care doctor thought it might be IBD or Crohns but the pain got worse over a recent weekend and we ended up in the ER. That quickly turned south and it is in her liver with a number of not so good looking spots. A section of her colon was taken out and they feel that there are no more tumors in there. (there was one and one polyp - both removed) Lungs are clear.

One of her grandfathers had it at age 75 and lived to be almost 90, there are no other family members who have had it that we know of so it would have never occured to us for her to have a check of the colon. 

We do feel somewhat fortunate that we know what it is now instead of waiting until June for a Colonoscopy which after the dr appt was the earliest they said they could get us in. And the main tumor is out ( 3/4 blockage so it had to go) so we do feel we are moving in the right direction versus a long drawn out waiting game of unanswered questions.

We have a number of appointments with some respected Oncologists in different parts of the country in the coming weeks and have also been bombarded with well intentioned ideas about alternative therapies which is overwhelming. 

things that have been mentioned are medical mj, dandelion root, curmucin, chris beats cancer etc

I am generally convinced that MMJ can help with side effects of treatment but have not been convinced it helps reduce tumors 

the Doctors we will be seeing are at UCLA, USC, U of C Chicago, Northwestern and one other I can't think of at the moment..what day is it again? They all have quite a following from what I understand so far

any recommendations of questions to ask would be appreciated - we have a list that is too long to post but I am looking for things to ask that we haven't thought of so please feel free to make suggestions

our first two appointments are on Monday

questions for those reading are - how criticial is it to start chemo soon? we would like to explore as many options as possible but don't want to prolong getting started 

these doctors are chemo drs so I wonder how much they know about alternative therapies and or combining them with chemo 

any idea how to bring that up? any thoughts on alternative therapies? success stories?

for those that saw several drs before choosing one - can you give me recs about how you chose yours? reputation, confidence? bedside manner? other???

at one of the institutions we have a very good friend who is head of all doctors and we feel that might help immensly in handling  her care and help us navigate the situation

I will check back frequently for responses and if you have or had a similar situation - section of colon taken out and it has or had spread to liver - please share your experience with anything you can think of

I have seen the Sloan video on Hepatic Arterial Therapy and would like any info or comments on that as well - it is something I would like to talk to these doctors about and get their input

thanks for reading and don't be shy in responding

 

 

 

 

 

 

 

 

 

 

 

 

 

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Comments

  • Ruthmomto4
    Ruthmomto4 Member Posts: 705
    Welcome but I am sorry you are here

    my husband was diagnosed at 43, he will be 51 in a few weeks. He started out in 2010 stage 3 went to stage 4 in 2014. he had a liver resection in 2014. It came back in his liver again last year right about this time. He started chemo in October, it took a while to be sure it was really back. On May 1st he will be having a second liver resection and they will be putting in the HAI pump you asked about. He is having this done at MSK in NYC. 

    You will find many people here that are stage 4 some to the liver, some to the lungs or both. Most do chemo there are some that do alternative therapies also. Some things are compatible with the chemo. Your wife needs time to heal before she can start chemo so waiting a little bit and finding the right dr won’t hurt and is a good idea. Good luck! This board is a great place, you will find caring people with lots of experience. 

  • Pamcakes
    Pamcakes Member Posts: 110
    So sorry you have to be here.

    So sorry you have to be here. But you are at the right place for a wealth of knowledge and real experiencE. My DH is 38 and diagnosed in July (about 2 weeks after his 38th bday). Brace yourself as the next several months will feel like a roller coaster. I read as much as I could, but mainly on this site only as some of the info out there just made me cry. I feel this forum can give you real life, real time info. A few things that I read that helped me was if someone offers to help you, allow them. I had never mowed grass in my life. A few of DH's friends took turns mowing it. I told myself that I would be the one prepared and take as much worry as I could So DH could just focus on treatment and getting better. When DH is feeling down, I reach out to friends and family to call him. This helps him and something I may not had thought of had I not read about another spouse doing this. I also contacted everyone I could think of to send DH cards after his emergency surgery and they are still continuing throughout treatment. I also read about this somewhere on this forum.  this may not be the advice you are looking for, but these have made a world of difference in keeping DH positive and upbeat! He has no clue i asked people to send cards, but every time he gets them he just says"wow I can't believe so many people care". This was especially helpful in the first few months after diagnosis and actually got him out of bed to get the mail each day! 

     

    You will get a lot of medical advice on here so I will leave that to all of the wonderful people on here! One other thing, anything you want to ask the doctors, do. You and your wife will be her advocate so make sure you have a good medical team that gives her the care and attention she feels she wants/needs. Many prayers to you and your family. 

  • Woodytele
    Woodytele Member Posts: 163
    Dr. Visits

    sounds like you are seeking out the best doctors you can find.  Just remember, you will be going to the dr. A Lot! you will have CT scans, treatment every two weeks, follow ups, further CT scans....etc... I travel about two hours to the best hospital I could find (Dana Farber), and I’m pretty sick of the travel.  Once chemo starts, you Probably won’t want to be jumping on planes all the time.  

  • B312C
    B312C Member Posts: 16
    edited April 2018 #5
    good advice

    thank you for the answers so far and the kind words

    Ruth - I will keep an eye out for your posts re HAI with interest and hope that goes well - I am eager to ask the drs we speak to about it - for us the potential possibility of a resection at some point is ....I dont know how to put it ....something to hope for?

    Pam - good idea, we already have an excellent support network in place captained by one of her friends and I will keep that in mind when the going gets tough - she really likes notes and cards and mail :D

    Woody - also good advice - if we choose a Dr that is not in town we will move for at least a while as I have a generally flexible career in that respect and she has family near a few of the places I mentioned so we may lean that way already - I wouldn't want her to have to fly for treatment - my mother has been through three rounds of 2 different kinds of cancer in the past 15 years ,I have at least a little idea of what to expect

  • abrub
    abrub Member Posts: 2,173 **
    Ask dr's about complementary med

    While traditional MDs want to go the traditional route first (and primarily) many excellent cancer centers have affiliated Integrative Medicine providers who can advise on complementary therapies.  I know that Sloan Kettering in NYC has an Integrative Med division, and their drs put me on a mushroom supplement (that is actually part of the chemo used in Japan.) They also have acupuncture and other mind-body therapies. It was not part of the therapy recommended by the standard oncologists.  In addition, the integrative med mds know what you should avoid during chemo and radiation.  For example, you don't want to overdo anti-oxidants as green tea, blueberries, acai, etc. can diminish the efficacy of many chemos and radiation, which work by oxidizing the tumors.  Thus a reminder to look into options to enhance the efficacy of treatment while minimizing side effects.  

    As of today, it is 11 years since I was diagnosed with Stage 4 Appedix cancer.

    Alice

  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    So very sorry

    So sorry to hear of your wife and diagnosis.  It sounds like you have done a lot of research already especially with getting all of these doctors lined up so fast.  There are others on this board that have combined the traditional with holistic and other therapies.  It will be you and your wife's choosing and one that you feel comfortable with.  I'm sure that this has thrown you in a loop of overwhelming thoughts and frustration as it is so hard to comprehend.  Please come back on here when you can get a set plan and doctor that you are comfortable with and share her treatment so we can give you a more accurate answer to some questions you might have.  So sorry you had to come here, but you have come to a very good group that can help you sort through all of this.

    Kim

  • gfpiv
    gfpiv Member Posts: 59
    Cancer / HAI

    I was dx'd w/ stage IV, over half my liver cancerous, in 2010.  Here I am NED (knock on wood) 8 years later.  In addition to a little luck / divine grace, I firmly believe that HAI at Sloan Kettering saved my life.  It delivers concentrated chemo directly to the liver, and you can still do systemic chemo while you are on it.  One important point - be very aware that the VAST majority of oncologists who do not have experience will poo-poo it's effectiveness.  Please do not let this alone deter you.  Search this and other boards for testimonials on HAI from Stage IV people that have actually had the treatment.  I am aware of a HUGE number of folks who have received unbelievable results after being told basically to put their affairs in order.  It's not for everyone, but if you are a good/lucky candidate it may well be an excellent option.  (On the other hand, IMHO unfortunately I think that, despite good intentions, "Chris beat cancer" probably does more harm than good to folks newly diagnosed with Stage IV colon cancer. However it is probably worth looking into "integrated medicine" approaches... and EXERCISE as much as possible.)

    Sorry your wife had to join the club, but hopefully she will receive some good advice.  I'm sure you are still both a bit in shock, and overwhelmed with questions.  I would be very happy to help out and answer questions, but I very rarely check back into this board lately...so please feel free to send me a PM.

    Best wishes, 

    Chip

  • peterz54
    peterz54 Member Posts: 341
    Start here

    Oncologist Dawn Lemanne gives a good overview of how to augment standard therapy with diet.   She puts this into practice.

    https://www.youtube.com/watch?v=W_diITmOeCM&t=801s

    Also this short talk at a major cancer center in Paris by researcher Valter Longo discusses the effects of short term fasting 

    https://www.youtube.com/watch?v=v4ame4E1rtE&t=311s

    In this 2017 talk, Brent Reynolds, PhD discusses how three natural substances, EGCG (green tea), Curcumin (tumeric), sulforaphane (brocolli sprouts), used in combination slows tumor progression. Data is presented.

    The substances are discussed at about 15 minutes into talk, but recommend the entire 25 minutes.

    https://www.youtube.com/watch?v=D6RW1fv3KD8&t=914s

    He runs the Reynolds Neural Stem Cell Lab at the Univeristy of Florida.

    You can also benefit by looking up recent talks by Oncologist Colin Champ and  Dietician Miriam Kalamian.  I will try come back later to add current links.

  • B312C
    B312C Member Posts: 16
    thanks again

    many great starting points, most appreciated. Dr tour begins today and I will get to the videos in the near future

     

     

  • PamRav
    PamRav Member Posts: 326 **
    Simple tip

    Everyone above gave you some really great advice.  I’ll add one thing, buy ourself a journal, notebook, whatever and write in every Dr appt, every question you have, every answer you receive and anything else you deem important.  You’re going to be hearing lots of opinions and advice, it’s quite easy to be overwhelmed and forget your own questions (even your own name and phone number for that matter).  Bring it to every visit it’ll really help you keep track of it all. 

    All the best to the both of you

    Pam 

     

  • peterz54
    peterz54 Member Posts: 341
    edited April 2018 #12
    Work by Prof SeyFried may also be informative

    Prof. Seyfried is known to some here for his work (as a researcher) with brain cancer patients in applying strategies to suppress glucose uptake in cancer cells

    Here is a link to his 2017 talk on an updated metabolic strategy, which he calls  Press-Pulse.  He explains it starting about 13 minutes in.. 

    https://www.youtube.com/watch?v=3TZnjC7SR_w&t=309s

    The paper is here:

    https://nutritionandmetabolism.biomedcentral.com/track/pdf/10.1186/s12986-017-0178-2?site=nutritionandmetabolism.biomedcentral.com

     The idea is to lower glucose by diet (plus modest calorie restriction) as  a baseline then administer glucose and glutamine inhibitors periodically along with hyperbaric oxygen.  Stress management is also part of the foundation.

    NOTE:  This metabolic therapy is not a proven majic bullet.   There are many unanswered questions in the area of metabolic therapies. The same is true of high cost standard toxic therapies. Optimizing one's metabolism to minimize tumor growth makes sense and is non-toxic, but should be done under physician care in order to monitor how the body reacts and to tweak the process if needed. Physician care lacking in standard therapy - not enough monitoring and treatment of side effects, and not enough monitoring of what's going on with the body (insulin, glucose, liver function, kidney function, stress, etc.). A physician or PA, other than the oncologist, should be involved to monitor overall health.    

  • B312C
    B312C Member Posts: 16
    tour continues

    and thanks Pam again, we have a running list of questions and comments in a notebook - although we lost some notes the other day somehow - now its all in one place ..ugh

    Peter, I am going to have to ask about that when I see a researcher next week - Lenz at USC - it seems to make sense to me although I didn't understand all of it or most of it

    she really needs to get her weight up so not sure how that would work with they way he described it

    additionally,

    we have resvd a spot in a trial that will combine chemo and immunotherapy thats seemed to work in other cancers - 

    still thinking over the plusses and minuses (if there are any) - any thoughts on trials are welcome - I do understand they are a science experiment - I do believe some advances are being made w immunotherapy and its enticing to consider - the dr we met with this morning said they are fairly strict about the diet and probably so about alternative therapies - we will have to keep that in mind

     

    please keep the thoughts coments and recs coming, they have been very helpful

     

    her situation has been described and pan ras wild if that helps or sounds familiar 

     

     

     

     

  • Macdougal
    Macdougal Member Posts: 18
    Chemo start

    I’m sorry to hear what you’re going through.  I think the answer to when to start the chemo depends on how aggressive your onc thinks the tumors are.  The more aggressive the tumors are, the sooner I personally would start treatment.  In fact, my onc told me if I waited 2 more weeks my liver metabolism would have been so messed up I wouldn’t have been able to take the Folfoxfiri + Avastn.  I did and the results are great.

    Just one person’s experience, everyone is n=1.

    Best of luck,

    -Doug

  • Mikenh
    Mikenh Member Posts: 777
    edited April 2018 #15
    I'm not stage 4 but I used

    I'm not stage 4 but I used the local doctor for oncology after consulting with a specialist at Dana Farber and his recommended course was the same recommendation that I got from the local oncologist. I did go to Boston at a top-ranked hospital for surgery. I have a friend with a spouse that went through something similar to your wife. He had surgery to remove the blockage and other surgeries on the liver spot. He started last summer and was NED around January or February this year - they went to Mass General. Some of what to do depends on how aggressive the tumor is. You might want to see what the tumor mutation is to see whether it's agressive or not. You'd need to send the tumor biopsy to some place to have it done but I think that the top places do do this stuff.

  • B312C
    B312C Member Posts: 16
    Macdougal said:

    Chemo start

    I’m sorry to hear what you’re going through.  I think the answer to when to start the chemo depends on how aggressive your onc thinks the tumors are.  The more aggressive the tumors are, the sooner I personally would start treatment.  In fact, my onc told me if I waited 2 more weeks my liver metabolism would have been so messed up I wouldn’t have been able to take the Folfoxfiri + Avastn.  I did and the results are great.

    Just one person’s experience, everyone is n=1.

    Best of luck,

    -Doug

    thanks Doug

    thats very encouraging to hear !!! - appreciate the good words and I will have to ask the next dr I see about how aggressive this is - the ones we have seen so farm seem worried but havent seen any reason to rush into chemo in the next few weeks - farther out yes but for now they have all suggested we talk to as many people we can until comfortable with a route

  • B312C
    B312C Member Posts: 16
    Mikenh said:

    I'm not stage 4 but I used

    I'm not stage 4 but I used the local doctor for oncology after consulting with a specialist at Dana Farber and his recommended course was the same recommendation that I got from the local oncologist. I did go to Boston at a top-ranked hospital for surgery. I have a friend with a spouse that went through something similar to your wife. He had surgery to remove the blockage and other surgeries on the liver spot. He started last summer and was NED around January or February this year - they went to Mass General. Some of what to do depends on how aggressive the tumor is. You might want to see what the tumor mutation is to see whether it's agressive or not. You'd need to send the tumor biopsy to some place to have it done but I think that the top places do do this stuff.

    thank you

    there's a lot going on in her liver

     

    and yes the recs on chemo seem similar - and we may use one of the big hitters as a consultant and have treatment at another place - your post is also encouraging re: friend NED

  • B312C
    B312C Member Posts: 16
    any ideas how to improve appetite?

    she is clearly not eating enough and is having trouble forcing food down

     

    weight loss is starting to be dramatic

     

    I am wondering if some kind of edible will help? and if it would conflict with the trial if we enroll in it

  • peterz54
    peterz54 Member Posts: 341
    Weight loss - very serious

    She may be moving into cancer cachexia which can be a very serious health issue on top of the cancer.  Should be evaluated by a professional as soon as possible.

    This short presentation provides an overview of cancer cachexia and might help prior to dicussing with your wife's physicians

    https://www.youtube.com/watch?v=_tf1XCsoqPY

  • linda7408
    linda7408 Member Posts: 21
    edited June 2018 #20

    Well my surgery went great an I no longer hAVE RECTAL CANCER.  Yayyy!! HOWEVER this one hit me hard. The rectal cancer had spread to my lungs.

    I understand the outome is not good.  Anybody here have Rectal cancer now stage 4 met to lungs?

  • Trubrit
    Trubrit Member Posts: 5,535 **
    edited June 2018 #21
    linda7408 said:

    Well my surgery went great an I no longer hAVE RECTAL CANCER.  Yayyy!! HOWEVER this one hit me hard. The rectal cancer had spread to my lungs.

    I understand the outome is not good.  Anybody here have Rectal cancer now stage 4 met to lungs?

    Hello Linda

    May I suggest you re-post this to your very own thread. That way, people will be able to answer you without getting confused by the replies to the original poster. 

    Here is the link to our home page https://csn.cancer.org/forum/128

    Tru