Topic: My Brother

Hi I am trying to get any information people may have on alternative treatments for this disease. My brother is Stage 4 and not doing really well at all this has all happened so fast. He has had surgery and has once againstarted to become jaundiced althought his stint is clear?? We are desperate and willing to do anything that we can do...I should meation that he is only 36. Being in Canada and in particular Saskatchewan we have little to hope for except the typical treatments that we feel we want to save until we have to...???? Any info would be great!!

2 (edited by jules Sun, 16 Jul 2006 13:10:40)

Re: My Brother

hi, I understand your desperation, my Dad is battling this beast too.

You mention that your brother had surgery, did he have a liver resection? or was it a bypass? how long ago was the surgery? - it takes a while for things to settle down post op.. is your brothers bilirubin level raised? has your brother had any chemo or radiation?

sorry for all the questions but it is difficult to advise without some more info really.. you must not give up hope.  There are treatments available to fight this beast its just a question of finding an onc who is a bit more dynamic and progressive and willing to give your brother some of the newer breakthrough treatments, so many people will just tell you that if you have cc it is hopeless, that there has not been enough research into the disease - my dad had a resection and now has a recurrance, he is currently on chemo and we have options lined up if this does not work for us.  Cancer vaccines are showing real promise (see my posting under clinical trials).  You will come across people on this site and elsewhere who have held the disease stable on chemo, managing it like a chronic disease (like diabetes or heart disease) my Dad is taking gemcitabine and carboplatin which is well tolerated.  The disease can be held stable for many months and even years, reasearch is moving fast at the moment, new treatments are coming along all the time.

Take care, keep strong, Jules

Re: My Brother

Thanks for the info
Yes his billirubin is up or what ever it is not supposed to be. He had surgury they took a portion of his liver and since then all we have done is wait. He has not started with any Chemo as he is just 3 weeks post surgury and we have not seen an onc. as of yet.
It is the worst wait we have ever had, thanks for your info, Lisa

Re: My Brother

Hi!

I just wanted to say hello and let you know that I really feel for you.  My little bro was also diagnosed just about 1.5 months ago with stage 4 CC.  He's oonly 25, so we were all just totally shocked.  He's been having some success with a clinical trial of Gemcitabine, Oxaliplatin and Avastin at Dana Farber in Boston.  I can only say that he's been feeling better - we don't yet know whether the tumors have shrunk, etc. as he will not be having  second CT/PET scans until August.  I just have a terribly helpless feeling, as I'm sure you do, as well.  Just know that you're not alone and try to keep your chin up!  Please feel free to e-mail me at suffolk06@hotmail.com and I can share with you all that I know, which, admittedly, is not that much. 

- Melissa

Re: My Brother

sometimes it takes a while for everything to settle down after the surgery - if your brother has had surgery then he has real hope, surgery can be curative for about 50% of people undergoing a resection, you could ask whether the surgeon was able to get good clear margins, you can't be sure that the jaundice means that some cancer remains and it is too early for cancer to come back.  chemo will be your insurance, as long as the incision is healing okay and your brother is mobile and able to eat reasonably then he should be able to start chemo soon, i would advise you to start looking into chemo options now so you are informed for when you speak to the oncologist, there is an excellent chemo worksheet on this site and different people on this site are on different combinations with varying degrees of success. 

i am sorry that you are facing this, your brother is so young, you have come to the right place, this site is a great source of info and support.

Jules

Re: My Brother

My sister is 52 and was diagnosed with cholangiocarcinoma in  November of 2005.  Not only did she have a tumor in her liver, she has 40 tumors on her lungs.   She has taken the general chemo and was also in a trial for new chemos.  The first round did nothing at all. After the new trial chemo, the tumors grew twice their original size.  She is now is Hospice care in Nashville, TN and has hours to live.  It has been a short but brutal battle.

Re: My Brother

Hi again I thought that I would let you know that David saw the onc. today....after my Mother called and DEMANDED something be done. He will start on the Gemcitabine in a week, after he has his stint replaced, we are excited to get the ball rolling.
They will montior things and see and then apply for coverage for others if this doesn't work...I hope that that is not the case but reality is we may need to look at that.
Being that we are in Canada all of this is covered by our health system it is just that we have to apply for any of the other things that you all refer to as clinical trials... they really don't do any here.
Thanks so much for all of the feedback that you have given it has been great, we have written down all of the drugs and went armed with all of our info the the clinic today...Good stories are great to here....
And I guess we all just have to have HOPE....

Re: My Brother

Mybro's Sis--

My father is also stage 4. He was just on gemcitabine with xeloda. It did not affect the tumor at all. In fact it grew. The first time he was on chemo, he had CPT-11, Xeloda, and Epirubison. That put him in remission for a year.
I do know a lady who is on Gemcitabine with oxyplatin and is having success. I think it needs to be a combo thing. I understand you have health care issues there, but you might at least ask for them to combine with something.  Good luck.

Re: My Brother

I want to agree with the previous posts that you are in a good position if your brother was considered a surgical candidate.  Now, the crucial thing for him becomes the systemic treatment with chemo. 

However, you need to give another try to get a combination chemo for him.  Your best bet will be to combine gemcitabine with 5FU/Xeloda (same drug administered differently) or one of the platins (Carboplatin, Cisplatin or Oxaliplatin) there is a lot of information and studies on these drugs.  Start pulling them up and work with your insurance or oncologist now to get him on some kind of combination of drugs, he will have a much better result if your oncologist will do this.

Re: My Brother

Hi All....this is going to sound cofusing but I am MyBro'sSis's brothers girlfriend and as she has posted previously just yesterday we saw the oncologist and chemotherapy has been booked to start next week. David lives with me and I was wondering if someone could provide me with some information as to what to expect while he is undergoing chemo.  We got tons of booklets yesterday but it would be nice to have some first hand advice.  I want to know what I can do to help him.  Although this whole process has gone extremely fast, it seems like an eternity.  I want to be there for him through this and I want to be able to help him as much as I can.   I never thought that at the age of 28 I would have to go through all of this but the whole experience makes me stronger everyday.

Re: My Brother

I'm sure you'll get a lot of posts in answer to your question.  Everyone's experience with chemo seems to be a little different.  While most of the pamphlets we read about chemo suggested that there were certain patterns, this has not been Mark's experience and perhaps one of the more difficult things to deal with during this whole process (the fact that  what happened the time before doesn't seem to suggest - at least for him - what is going to happen the next time.  I think some of this comes from mixing chemos and different therapies.

If you have an oncologist who because of your boyfriends age is going to treat this cancer aggressively then you are looking at a bit of uncertainty as to what to expect because some of the mixes are not well tested or documented as far as side effects when mixed.

One of the things that has been really helpful is hydration, keep him well hydrated and don't be afraid to go in and get some extra fluids if he is not getting enough.  I am not speaking only of my brother but of several other young cholangio patients we have been in contact with as well, this has been one very helpful thing. 

There are many other things but I'm sure some of the other caregivers on the website will want to add.

Good luck and gather as much information as you possibly can so that your oncologist knows that you are ready for battle.

Stacie

Re: My Brother

Jamie -

My brother is dealing with this and, although I know everyone deals differently, I've got to say that he is handling it way better than I ever could have imagined.  You read all of the side effects of the drug(s) and think that it's going to be absolutely terrible, but just know that those are all worst-case scenarios.  Chris, my brother, has been able to go back to work and has generally been feeling better now than he did before starting treatment.  He lost a lot of weight at first, but we all think that it's because the fluid in his abdomen has gone down.  He's seemed to level off and at least he now has an appetite (which he did not for a while - a really tough thing for a family of big, Italian eaters!)  Just try to take it one day at a time and do know that there is a real possibility that it will not be as bad as you fear. 

By the way, the e-mail address that I posted earlier has been disconnected.  You can feel free to e-mail me at cel10216@suffolk.edu.  (I'm only 28, too...  my bro went into the hospital on the night of my law school graduation...  it's so shocking.)

- Melissa

Re: My Brother

Hi I am Jon,s wife , not sure if you have seen his posts or profile . He was dignosed in March this year , a total shock to us both as I am sure you all know. He is having Gemcitabine at present , has another 2 cycles to go . We are concerned what will happen next and have found some valuable info on this site . We have looked into RFA and other drug therapies . As with you jaime and mybros sis , it is hard to know how to help , but all I can suggest to you from my 3 months experience is to just be there to listen and help when needed, but also give him his own space , something I admit I find hard to do !! as Jon will tell you . I have  found that living in England the drug therapy is limited by NICE and that there is some reluctance to operate  , but we are still hoping to look into other options

Re: My Brother

Thanks for all the information and I know that every case will be a little different.  I have filled out the patient profile, however because he has not done any treatment as of yet I did not fill out much.  I will add to it as soon as I know more.  I am glad that this site exists, it is a wonderful resource.

Re: My Brother

Alison

I am a CC sufferer based in UK.  From my own experience of this disease I would comment:

(1) The ABC01 trial in UK compared Gemcitabine alone vs Gemcitabine with Cisplatin (Gemcis).  The trial is still running but initial results show that Gemcis gives signifacantly better response rate than Gemcitabine alone.  I am currently on Gemcitabine with Carboplatin (GemCarbo) - carboplatin is a 2nd genration of Cisplatin (less side effects) - and this is under the NHS.  Suggest you ask Jon's oncologist about this and if necessay find another oncologist.

(2) Some surgeons are reluctant to operate but it's the only route to extended survival.  Depending of course on how advanced Jon's tumour is you can find aggressive surgeons who will operate.  I've been through this and my tumour was removed last October.

Good luck

Geoff

Re: My Brother

Geoff
  Thank you for the info .
We are going to the hospital for Jon,s chemo tomorrow and are going to ask re combination therapy , the carbo platin . we were pleased to see you had your tumour removed and hope you are doing well . Someone else on this site sugested Prof Peter Lodge in Leeds as a agressive surgeon and we were wondering who did your surgery ? as the hospital Jon is under has said this is not a possibility . We are not really sure what stage Jons tumour is , as he has no symptoms at all , it was only discovered as he had a stomach bug last July and hisliver was enlarged

How are you feeling with the Gemcarbo ?

Alison

Re: My Brother

Alison

My surgery was done by Prof Peter Lodge in Leeds.  I can't speak highly enough of him.  My tumour was very advanced and although Prof Lodge achieved clear margins I now have metatistic disease which is being treated by chemo.

Side effects with the Gemcarbo regime aren't too bad.  Main problem has been chemo-induced anemia which has required a couple of blood transfusions.  In addition I am usually very tired the day after chemo.  I have a CT scan in a few days and will find out whether the chemo is being effective.

Good luck

Geoff

Re: My Brother

Geoff 

Thanks for info .We asked for scans today and will have to put it in writing  and will then get in touch with Prof Lodge ,  I gather we write to him and send scans etc ,we live in London , but no matter . Good luck with scan

Alison and Jon

19 (edited by Caroline Stoufer Tue, 25 Jul 2006 23:49:39)

Re: My Brother

Hey Everybody-

I just wanted to weigh in with my experiences.  I am 51 years old and was diagnosed with CC last November when they took a tumor out of my liver and half my liver with it.  It took a good two months to recover as the doctors predicted.  For the first month, I felt like I'd been hit by a freight train.  I had pain, constipation from the pain medicine, and not much appetite.  But that second month, I would feel better and stronger each week.

My doctor didn't put me on chemo right away so I could participate in a clinical trial.  I had a scan in late February and four tumors had already grown back in my liver.  They had found cancer in one of nine lymph nodes sampled during surgery.  They expected the cancer to come back, but not so fast.  As it is in my lymph nodes, it means I need a systemic treatment such as chemo.

I did the Sorafenib clinical trial in mid March - early May.  At my last scan in early May, my tumors had doubled in size and I had new ones, so they took me off the Sorafenib because I had too much tumor growth.

I started on Gemzar (gemcitabline) the third week of May as a single agent.  My oncologist added Xeloda, an oral medication taken twice a day, the last week of June.  I was on it for one week, but I got hand-foot syndrome (shouldn't have worked 13 hours on the 4th of July, but it's our busiest day of the year), so I went off the Xeloda.  Plus I was going on vacation and the doc said I could go off it for that week.  I did the Gemzar for 7 weeks and had the 8th week off which fell during the vacation as well.

At my oncologist's appointment last week, my liver enzymes were the lowest they'd been since surgery.  One even fell in the normal range, and the others were just out of normal range.  My CA19-9 tumor marker was up, but not as high as it's been.  So I started on the Gemzar and Xeloda again last week.  I'm taking the Xeloda for five days and two off instead of seven days a week.  My oncologist feels the Xeloda made the difference in the liver enzymes.

My experience with Gemzar is that I usually feel good the day of chemo and the day after.  (This is usually Tuesday & Wednesday for me.)  They give me a steroid before the chemo infusion which I think is the reason I feel good those first two days.  Then I usually have a slump for two days - Thursday & Friday.  I feel really tired, queasy (but not nauseated), and may have flu like symptoms such as chills, fever, and aches.  Then I start to perk up on Saturday, or sometimes as early as Friday night or afternoon.  I've found since we added the Xeloda, that my slump days are worse than when just on the Gemzar alone.  I think my doctor started me just on the Gemzar to get my body used to it, and then he added the second agent.

My oncologist has applied with my insurance company for Avastin which we may add in a few weeks.  I'm not sure if the Avastin replaces the Xeloda or we'll do all three.  I did get approval from the insurance company for the Avastin.

I also take a multi-vitamin, green tea extract (which my oncologist recommended). Omega-3 Fish Oil, Co-Q-10, and vitamin B -6 which helps with some of the side effects of the Xeloda.  I have taken other supplements suggested by a reputable integrative medicine doctor, but my oncologist asked me to quit taking certain ones once I got on chemo.  I was taking mega doses of Vitamin C earlier this year, but my oncologist advised me that the Vitamin C may actually enable the tumors to grow more easily, so I stopped that right away.  I clear everything I take with him. 

I do try to eat as many raw fruits and vegetables as possible and organic if I can.  I still have some ice cream every week.  I try to eat fiber, too.  Berries are supposed to be good and any fruit or vegetable with deep, intense color.  I did meet with a nutritionist at my oncology center.  I was avoiding red meat, but since starting on chemo, I've been slightly anemic, so I do include beef in my diet again and my hemoglobin has held stable.   By the way, the American Cancer Society is an excellent resource for info, and if you come to America, they may be able to provide assistance with travel costs.  If your country has a cancer society they may have some of the same info or travel assistance.

Additionally, I've been taking Zoloft, an anti-derpessant, for about two months now, plus I attend a support group for women with cancer at my oncology center in Grand Junction, a two hour drive from us.  I have started a cancer support group in my own community and we will meet for the first time on August 18th.  I do have a blog on this site, and I have started a memoir about my cancer experience.  Also, this website is excellent and I don't know what I'd have done without it.  It's also good to check clinicaltrials.gov every so often for new clinical trials.

I have taken Ambien to sleep when needed, but that was primarily when I was on the clinical trial, broke out in a bad rash and was on steroids (which kept me up all night) to combat the side effects.

I had lost about 25 pounds since two years ago, but I've gained 5 back.  My appetite is usually good.  Just a little queasy sometimes after chemo on those slump days.  I've taken Kytril for the nausea and I have two back up nausea medications that I've never taken.  I try just to take Papaya enzyme for the nausea as it is usually mild and the Kytril doesn't really do that much plus it can give you a headache.  I actually feel pretty good these days.  I do have pain in my abdomen.  I don't know if it's from the surgery, my liver being enlarged, the tumors or possibly all three, but it's not that bad.  Occasionally, I'll take Tylenol for the pain.  The oncologist said to take Ibuprofen only sparingly while on the chemo.

A friend of mine who is HIV positive and has been on medications for 12 years told me to learn to embrace the medication, even with all it's side effects, because it keeps us alive.  That advice has helped me on many occasions.

Lastly, I think oncologists have a duty to give us the worst case scenario in case that happens for us, but I have a very strong attitude and lots of support from family, friends, and my community.  I sometimes just say to myself, "I'm not leaving this world until I'm ready!"  I have lots of hope, but I've also accepted the fact that this disease will probably overtake me at some point and I have peace about it.  But I still plan to keep fighting.  I believe miracles happen all the time.  And if you're feeling good, it's okay to have some days of denial about having cancer.

I still try to participate in life as much as I can - I'm in a melodrama next week and I'm in writing workshop this week.  I've given up a lot of volunteer activities and having cancer is a great way to fade out of some organizations that took more of your time  than you wanted.  I only allow myself to feel self-pity while I'm in the shower, which I have done sometimes - why me, why did I get this, what caused it, what did I do to deserve this?  I don't want to waste any of what time I have left on a lot of negative feelings.  I do allow myself a good cry sometimes, but I seem to need that less and less.   I have felt devastated at times - like when I was first diagnosed with a tumor in my liver, when the tumors grew back so fast after surgery, and when I had to go off the clinical trial.

My husband has been incredibly supportive.  I try to keep a good attitude, not just for myself, but also to make it easier for him.

So, I hope this helps.

-Caroline Stoufer

Re: My Brother

Wonderful post Caroline.  Thank you.
-Peter

Re: My Brother

Stacie, Rick and Caroline,
MIght Caroline's post of her experience be easier for others to find as it's own thread under experiences?   
-Peter

Re: My Brother

Hi Caroline

I read your latest post with great interest.  It's good to hear about someone who , despite this awful disease, manages an active lifestyle.  You obviously have a very positive attitude.

Regarding Sorafenib which apparently didn't work for you, are you aware of the success rate in the trials which have been (or are being) carried out ?  As I understand it Sorafenib has been particularly succesful with kidney cancers but I'm not sure about others eg CC.  The reason I ask is that I'm seeing my oncologist next week and I am preparing a list of issues to discuss.

Also regarding supplements I'm already taking green tea extract and Omega-3 (in the form of flax oil), could you explain what Co-Q-10 does ?

I look forward to hearing how you get on with Avastin, hope it works.  My oncologist believes that this is one of the most promising drugs around.

Best wishes

Geoff

Re: My Brother

Peter,

I agree it would be easier to find.  However, I cannot move individual posts.  I can move topics (the whole discussion) but not this one post. 

Caroline,

Maybe you'd be so kind to copy this to a new topic?  Let me know if you need help doing that.

Rick (rick@cholangiocarcinoma.org)

Re: My Brother

Caroline,

Thanks for the update.  I wish everyone would post a good update once a month so we knew what people were trying and how things were going (I know this isn't subtle - haha).  This would give us a lot more information to work with and give everyone some things to look into and research for their own treatment.

Avastin is not chemotherapy so it will be added not used instead of something else.  It works as a boost to chemo (in simplest terms).  It has never been shown to work on its own, but in every clinical trial on all kinds of cancer, it has boosted results.  Geoff's oncologist and ours feel the same about Avastin.  They also don't think it adds to the side effects - so this is good news.

You are already using a lot of alternative treatments but I have been researching something the last few days that I'm very interested in and I will pass it on here.  I'm going to post the articles in the alternative section so they can be more easily accessed.  The product is called Avemar or "Ave" in the United States (it has only recently been available in the US).  There are about 20 articles in pub med (you can reach that site from the general information area here - it is very easy to register and access information).  All of them show that this natural product is doing good things where cancer is concerned.  We are meeting with our oncologist and a naturopath in the next week and we will discuss this product with both of them.  It looks to me like this is a natural product (they say it has no side effects, just doesn't taste too great) that will break the barrier between modern and alternative medicine - at least that is what the peer-reviewed articles are saying. 

Stacie

Re: My Brother

Caroline,

Thought this might interest you since you've had trouble with hand and foot. 

Retrospective study of capecitabine and celecoxib in metastatic colorectal cancer: potential benefits and COX-2 as the common mediator in pain, toxicities and survival?Lin EH, Curley SA, Crane CC, Feig B, Skibber J, Delcos M, Vadhan SR, Morris J, Ayers GD, Ross A, Brown T, Rodriguez-Bigas MA, Janjan N.
Department of Gastrointestinal Medical Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX 77030, USA. elin@mdanderson.org

OBJECTIVE: COX-2 activation may mediate capecitabine induced toxicities, eg, hand-foot syndrome (HFS) and colorectal cancer progression, both of which may be improved by concurrent celecoxib. PATIENTS AND METHODS: From October 2000 to December 2003, 66 patients with metastatic colorectal cancer received concurrent capecitabine at 1000 mg/m/d b.i.d. and celecoxib at 200 mg b.i.d. (XCEL). Twenty-four patients were chemo-naive, 42 patients were second-line; while 34 had XCEL with radiation. RESULTS: The median duration of XCEL was 7.2 months (range, 1.5-38 months). Ninety percent of Grade 2/3 HFS (17%) occurred after 6 months and incidence of grade 3/4 diarrheas was 8%. The overall response rate was 38% (95% confidence interval [CI], 26-51%), with 11 patients (17%) achieving complete responses and 2 patients (3%) with near complete responses. Six patients (9%) become resectable after sustaining treatment response. The median progression-free survival (PFS) and overall survival (OS) was 8.3 months (95% CI, 7.0-11.0 months) and 22 months (95% CI, 17.8-31.5 months), respectively. Improved median PFS of 14.5 months (P = 0.0001) and OS of 31.5 months (P = 0.005) were noted in patients with normal lactate dehydrogenase (LDH) levels (n = 37) than patients with high levels of LDH (n = 29). CONCLUSIONS: XCEL integrating radiation may improve response rate and survival and reduce toxicities, notably HFS for patients with metastatic colorectal cancer, leading to a randomized phase III study.

PMID: 16755175 [PubMed - indexed for MEDLINE]