Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Metastasis to liver - treatment options

2

Comments

  • Bellen
    Bellen Member Posts: 281
    edited September 2016 #32
    Liver mets

    So Sue, do you know if fluorouracil is the 5Fu?  Or would it be added to each of the chemo cocktails if that was the protocol?  Thanks, had to really check the spelling - not easy, as you say.

  • Trubrit
    Trubrit Member Posts: 5,526 **
    Yes, it is, Bellen.

    5FU is Fluorouracil. 

    SUE

  • lizard44
    lizard44 Member Posts: 409
    edited September 2016 #34
    Bellen said:

    Liver mets

    Thank you for all the encouragement and info.  I am looking at wigs - as I'm very pessimistic about chemo and keeping my hair.  Is there any cream/other that helps with itchy scalp or skin, and for the rash?  Also are the chemo cocktails folfox and folfiri acronyms - thought each had 5Fu - one with oxoliplatin (folfox) and the other with irinotecan (folfiri).  Not sure, as tried to absorb lot of info at appt.  I wish I had the confidence to dye my hair blue too - good for you!  Best to all.

    Itchy scalp/skin

    Bellen, I've found that   several different things work well, but on different areas and for different amounts of time. When I first began the Erbitux, coconut oil was my moisturizer of choice and it worked well for a time. I used Aveeno ultra calming foaming cleanser and it still works well on my face, but not as a body wash. I began to get red and itchy every time I showered, so I switched to Aveeno  oatmeal soap and Aveeno lotion, which worked well  for awhile, but then the  flaky skin  got too much for them.   The  Erbitux website offers a free  patient self care kit, and I ordered one.  It contained a bar of Aveeno soap, lip balm, travel-size containers of several different products including Lubriderm and Jergens Ultra Healing moisturizer,  suntan  lotion and a nail care kit. They came in very handy.    I also found that Head and Shoulders shampoo worked well as both a shampoo and body wash. For my feet I use a  cream I mixed up of whipped shea and emu oil and slept in socks.  That really seemed to help. It might be a good idea to buy some of the small travel/sample  sizes of several  different moisturizers and see which works best for you. A friend  recommended Argan oil as the only thing that gave her skin any relief when she was on chemo, but it didn't work as well for me.  It's another of those individual things- everyone seems to react differently and what works well for one person my not work for someone else.

    Sue answered the other part of your question about the acronyms  folfox and folfiri, but there are also  combinations outside those two. My oncologist says she hasn't even scratched the surface of what is available and what might work  for me as a particular person in a particular situation with a particular  condition. Good luck with your treatment- and don't get discouraged- there is an awful lot of info to absorb- it seems almost overwhelming at times.  But it's also very fascinating.

  • Bellen
    Bellen Member Posts: 281
    Liver Mets

    Re: itchy skin - I used aloe vera squeezed out of a live aloe vera plant for the bad burning I had from radiation treatments years also. Good thing - no perfumes, etc.  Wonder if it would work for itching as well.  It is not sticky like some aloe vera that I have bought.  Thank you for that advice.  What does one use for rashes, as some have said treatment caused that? May be asking more about other side effects soon, if the group doesn't mind.  Trying to stay positive, but unfortunately because I have had so much "waiting", have been online reading and it is very depressing.  Have to read more positive things to stay positive, so thank you for everyone's posts.  

  • Trubrit
    Trubrit Member Posts: 5,526 **
    Bellen said:

    Liver Mets

    Re: itchy skin - I used aloe vera squeezed out of a live aloe vera plant for the bad burning I had from radiation treatments years also. Good thing - no perfumes, etc.  Wonder if it would work for itching as well.  It is not sticky like some aloe vera that I have bought.  Thank you for that advice.  What does one use for rashes, as some have said treatment caused that? May be asking more about other side effects soon, if the group doesn't mind.  Trying to stay positive, but unfortunately because I have had so much "waiting", have been online reading and it is very depressing.  Have to read more positive things to stay positive, so thank you for everyone's posts.  

    Pure Aloe Vera

    I have a pure Aloe Vera called Abubrey Organics.  I have to keep it in the fridge, as it is the real stuff, with no fillers or gels. You have to apply it carefully, as it is runny. But right out of the fridge on a sore bum is wonderful. :)  

    Good luck with the itching. I know many here have had it, so hopefully someone will pop on and answer your question, soon. 

    SUE

  • Bellen
    Bellen Member Posts: 281
    Liver mets and treatment

    Hi all - Just talked to my Onco and he mentioned having folfuri with avastin as chemo.  He said radiologist said I have about 15 tumours throughout liver - not good news. Just had MRI liver, having colonoscopy next wk, as saying adenocarcinoma with mets to liver, and port put in - chemo starts end of mo. Boy, has taken a long time to get started - and will be travelling few hrs ea way as my own city has been so untimely with almost everything - sad.  Any suggestions on the Folfuri treatment or side effects.  Thanks so much everyone - so appreciate.

  • lizard44
    lizard44 Member Posts: 409
    edited September 2016 #38
    FOLFIRI side effects

    I haven't had the same combination- I had Folfox plus Avastin and am now on Irinotecan plus Erbitux. Diarrhea was  the main thing I was warned about with the irinotecan and the doctor wrote me a prescription for Lomotil (Diphenoxylate-Atropine) in case it was needed, but I've only had to take a few tablets, since the Erbitux causes constipation and they mostly balance each other out.  I'm not sure whether  the irinotecan  works the same  in combinaton with the FU and leucovorin in the FOLFIRI combination. The Avastin didn't cause me too many problems, fortunately, and the nurses  monitored me pretty closely during the first infusion. They began with  an infusion of a steroid to counteract any allergic reactions and then an infusion of anti-nausea and anti-diarrhea meds before beginning the  FOLFOX infusion. I imagine it's the pretty same procedure with the FOLFIRI. I was always pretty wiped out  after the infusion  and slept a lot  after I got home and was usually still somewhat fatigued the day after, but that could be   due to my age, too. My oncologist  and the  nurses are pretty good about explaining  what  drugs I'm getting and why and give  very useful info sheets that list what to expect and when to call the doctor,  you could ask if your team has something similar. One odd thing has been that on  all the infusions, the skin on my face gets a deathly grey pallor on the day of the infusion but then begins to  turn beet red by the next day and feels very hot before going  back to normal, but I've never had a fever with it. You may or may not have something similar happen- as I said before we all seem to react differently. I hope your  chemo  zaps those  liver lesions down to a size where they can be removed or ablated and that it does so  with minimal side effects.

    Grace/lizard44

  • Bellen
    Bellen Member Posts: 281
    edited September 2016 #39
    Liver mets

    Hello Grace - Did you get liver mets after your colorectal original diagnosis?  Sorry, if you have already mentioned this.  Still not sure where my liver mets originated - (biopsy says adenocarcinoma) but having colonoscopy on Mon to check that area.  Thank you to everyone for their suggestions and any info you have shared. Very much appreciated.

  • funshine
    funshine Member Posts: 26
    edited September 2016 #40
    Bellen said:

    Liver mets and treatment

    Hi all - Just talked to my Onco and he mentioned having folfuri with avastin as chemo.  He said radiologist said I have about 15 tumours throughout liver - not good news. Just had MRI liver, having colonoscopy next wk, as saying adenocarcinoma with mets to liver, and port put in - chemo starts end of mo. Boy, has taken a long time to get started - and will be travelling few hrs ea way as my own city has been so untimely with almost everything - sad.  Any suggestions on the Folfuri treatment or side effects.  Thanks so much everyone - so appreciate.

    side effects

    Hi Bellen,

    If you get mouth sores the doc can prescribe a majic mouth wash that helps them heal quicker and it numbs them so you can eat better. Another thing I did was to use coconut oil to pull or swish between my teeth for 10 to 15 minutes before I brushed my teeth. I used bioteen tooth paste, it didnt have the burning effects of regular tooth paste. They also have mouth wash and mouth spray to help with dry mouth without burning the sores on your gums. Make sure you spit the coconut oil out in the toilet because it contains toxins, do not swallow it. It also whitens your teeth!

    Another side effect that you might eventualy have when you get the nuelesta shot after you get the pump off after 48 hours. The shot is necessary to keep your white blood cells in the right range to keep you on track to keep getting treatment. The shot will cause your bones to ache. I used take 24 hour Allegra, for allergies,  the day before, the day of, and the day after the shot. It alleviates some of the pain.

    best wishes,

    Linda

  • Bellen
    Bellen Member Posts: 281
    edited September 2016 #41
    Liver mets

    Hi Linda - Thank you for your info. Had such awful mouth sores with initial cancer had to use a swab instead of toothbrush - had sores under tongue, in throat, everywhere - maybe moreso called thrush. Came on very suddenly. Want to be proactive as I am trying to maintain my weight also - quite thin already, and worried about not being able to eat - already having diff with fullness and discomfort when eat small meals. Is the biotene a toothpaste? Wonder if baking soda would work. And intend on swishing with some mixture ahead of time, although my Onco had said it may not prevent.  

  • lizard44
    lizard44 Member Posts: 409
    edited September 2016 #42
    Bellen said:

    Liver mets

    Hello Grace - Did you get liver mets after your colorectal original diagnosis?  Sorry, if you have already mentioned this.  Still not sure where my liver mets originated - (biopsy says adenocarcinoma) but having colonoscopy on Mon to check that area.  Thank you to everyone for their suggestions and any info you have shared. Very much appreciated.

    Liver mets

    I've copied and pasted  what I wrote on my "about me" page: I was diagnosed with rectal cancer following a colonoscopy on April 8, 2015. A subsequent CT scan showed several spots on my liver, the largest being 1.5 CM. The colorectal surgeon said I would be receiving neoadjuvant treatment to shrink the rectal tumor, but he felt the liver spot was probably a hemangioma rather than liver mets. He said he would do a procedure for a port implant for the chemo. He set up an appointment with a clinical oncologist who said I would receive treatment of five days a week 5-FU chemotherapy with radiation therapy to run concurrently. She said she would like to make sure about the liver spots, though and scheduled a PET scan for 5/11/15. I met with the radiation oncologist on 5/12, was all set up for radiation to begin at the same time the chemo began. I told them about the PET scan and they pulled it up on the computer. I could tell something was wrong. The PET scan report showed that the liver spot lit up like a Christmas tree, which changed the whole game plan. I was now Stage IV. I had the port placed on 5/19/15 and the oncologist set me up for a more aggressive chemo plan, and put the radiology on hold.

    You also mentioned in another post that you were thin and worried about losing weight.  That was a concern for my docs, too- I weighed 79 pounds when I got the initial colonoscopy, but have managed to maintain a weight  between 82-85 pounds  consistently since begining treatment.  I have rarely weighed over 85 pounds my whole life, with the exception of pregnancies when I once ballooned up to a massive 109  lbs. Smile

    Grace/lizard44

  • ReginaS71
    ReginaS71 Member Posts: 7
    edited September 2016 #43
    dancer2 said:

    liver mets

    i started a session but only two responded. I was diagnosed in oct of 15 with a colon tumor (cancer) and one lesion in liver and two tiny spots one in each lobe...liver spot was ablated out the following april and was told by the radiologist it was successful and no new spots anywhere and that was just at the end of may of 2016. a month later had to have pt/ct scan for my oncologist and he just told me my liver glowed and i now have six new tiny spots in the lungs and four in the liver and said come back in 3 months. i, of course, want them out and since the oncologist said nothing about seeing anyone else i went back to the radiologist who explained matters to me and his suggestion was the thereasphere procedure which you can look up. however, he did not say he talked with my oncologist or not so i went back to my colon surgeon and she basically told me that metastisized cancer is in the blood and one needs chemo and gave me a card for another doctor ( and she recommends no one) and i see that doc tomorrow. at this point in my journey i have come to realize we are all basically alone, so be on top of it. I have had two doctors tell me they are baffeled why my onc said what he did. one told me to go see a certain doc at the mayo in minnesota if i wanted to hear from the best. my original doc at least told me to go see what this local doc has to say...don't ask about prognosis, it will play with  your mind. as you can tell from this site, many live with it and deal with it as it comes.........it's getting a good doctor imho. this is a great site and full of good, helpful information.

    My Prayers Are With You

    I am so sorry you are facing this giant! I pray that you will find the doctor that has the most wisdom and will receive the answers and help you need.  The Lord bless you and keep you and make his face shine upon you!

  • Bellen
    Bellen Member Posts: 281
    edited September 2016 #44
    Liver mets

    Hello all - Grace, you said you were able to maintain your weight.  My Onco mentioned giving me a steroid to increase my appetite - were you ever given a steroid?  Any other suggestions? The dietician mentioned several small meals, which I already do pretty much because of my abdominal fullness after eating and also by the end of the daY feeling quite full.  Hoping the anti-nausea or other? might help me to maintain.  Having colonoscopy Mon and port Wed, so finally things are progressing. Will report back after Wed appt with specific chemo plan, and I hope others can share any suggestions that might support my treatment and side effects.  Thanks so much everyone - very much appreciated. Wishing everyone the best. 

  • lizard44
    lizard44 Member Posts: 409
    edited September 2016 #45
    Bellen said:

    Liver mets

    Hello all - Grace, you said you were able to maintain your weight.  My Onco mentioned giving me a steroid to increase my appetite - were you ever given a steroid?  Any other suggestions? The dietician mentioned several small meals, which I already do pretty much because of my abdominal fullness after eating and also by the end of the daY feeling quite full.  Hoping the anti-nausea or other? might help me to maintain.  Having colonoscopy Mon and port Wed, so finally things are progressing. Will report back after Wed appt with specific chemo plan, and I hope others can share any suggestions that might support my treatment and side effects.  Thanks so much everyone - very much appreciated. Wishing everyone the best. 

    Steroid

    Bellen- I  was given Dexamethasone Sodium Phosphate, which is a  glucocorticosteroid, before the Folfox  infusions and currently  get it before the Erbitux and irinotecan infusions, too, along with the anti-nausea meds. I also find it better to eat several small meals rather than three larger ones. I avoid fried foods and most processed food, along with  junk food. We eat fish and chicken rather than beef, pork, etc. and I try to get  a lot of  fruits and veggies, although I've discovered that raw fruit doesn't agree with me any more with the exception of bananas,so  I  usually find a way to incorporate fruit in a cooked sauce or heated salsa.  When I just don't feel like  eating solid food, I'll often make an avocado/banana/yogurt smoothie which is thick enough to eat with a spoon and leaves me feeling  full without feeling stuffed.  I  eat a fair amount of yogurt and take a probiotic and that seems to help keep my gut flora working well.

    Good luck with the colonoscopy and the port placement- will be thinking about you.

     

    Grace/lizard44

  • PhillieG
    PhillieG Member Posts: 4,866
    smb245 said:

    HAI

    Hi Chip - I am looking at HAI at Sloan Kettering.  Can you share a little bit more about your experience with it?  I am still Chemo Niave as I was just diagnosed within the last week. I have been told by one surgeon that my liver is currently unresctable, however, if we can get my tumors to shrink I could become a candidate for surgery.  My surgeon thinks HAI would be my best option.  Concernerd because I live in Arizona and wondering about possible side affects while I was home and away from cancer hospital. 

    HAI @ MSKCC

    On Sept 20, it will be 12 years since I had my HAI pump installed at MSKCC. Best thing I did from a medical standpoint. It hasn't been in use since mid 2005 but I still have it in there and get it primed every 2 months or so in the event that I need it. Once it's take out, there's no reinstalling it. I'll get my deposit back when I "check out" for good.
    My Onc, Dr. Kemeny, has a 60% 10 year survival rate using the pump. Why it's not used more is a mystery to her and to me as well. As she put it, "it's not rocket science"...

    Good luck with everything.
    BTW: I have met many people who fly in for all over to have consultations with her.

    http://imgur.com/a/rv66d  (that's dot g i f )

    PS: Why can't I add images anymore???

  • Trubrit
    Trubrit Member Posts: 5,526 **
    edited September 2016 #47
    PhillieG said:

    HAI @ MSKCC

    On Sept 20, it will be 12 years since I had my HAI pump installed at MSKCC. Best thing I did from a medical standpoint. It hasn't been in use since mid 2005 but I still have it in there and get it primed every 2 months or so in the event that I need it. Once it's take out, there's no reinstalling it. I'll get my deposit back when I "check out" for good.
    My Onc, Dr. Kemeny, has a 60% 10 year survival rate using the pump. Why it's not used more is a mystery to her and to me as well. As she put it, "it's not rocket science"...

    Good luck with everything.
    BTW: I have met many people who fly in for all over to have consultations with her.

    http://imgur.com/a/rv66d  (that's dot g i f )

    PS: Why can't I add images anymore???

    Images

    The images feature - including smilies - hasn't worked since the last 'upgrade'.  

    AS someone who REALLY likes to add smilies and emoticons to messages, plus pictures, I find it very frustrating. I have emailed them several times concerning this, but have had no real reason given me for the change. 

    Good to see you, as always, Phil.

    SUE

  • PhillieG
    PhillieG Member Posts: 4,866
    edited September 2016 #48
    Trubrit said:

    Images

    The images feature - including smilies - hasn't worked since the last 'upgrade'.  

    AS someone who REALLY likes to add smilies and emoticons to messages, plus pictures, I find it very frustrating. I have emailed them several times concerning this, but have had no real reason given me for the change. 

    Good to see you, as always, Phil.

    SUE

    I figured it out

    It won't allow that type of file it seems.
    It's worse than I thought! I can't believe that it modifies a screenshot!!! It's a conspiracy I say!!! :-)

  • funshine
    funshine Member Posts: 26
    edited September 2016 #49
    Bellen said:

    Liver mets

    Hi Linda - Thank you for your info. Had such awful mouth sores with initial cancer had to use a swab instead of toothbrush - had sores under tongue, in throat, everywhere - maybe moreso called thrush. Came on very suddenly. Want to be proactive as I am trying to maintain my weight also - quite thin already, and worried about not being able to eat - already having diff with fullness and discomfort when eat small meals. Is the biotene a toothpaste? Wonder if baking soda would work. And intend on swishing with some mixture ahead of time, although my Onco had said it may not prevent.  

    mouth sores

    Yes Biotene has toothpaste, mouthwashes, dry mouth sprays and other products. They dont prevent but when you have the sores it doesnt add to the pain when you brush. Very gentle and effective. You can use baking soda too.I also had geographic tongue. My tongue would swell and turn white and have strange lines and formations on it. The magic mouth wash dr can prescribe for you helps with the sores. nothing really prevents them. Its just knowing how to deal with them so you can eat and keep your weight up.

    best wishes

    Linda

  • funshine
    funshine Member Posts: 26
    Bellen said:

    Liver mets

    Hello all - Grace, you said you were able to maintain your weight.  My Onco mentioned giving me a steroid to increase my appetite - were you ever given a steroid?  Any other suggestions? The dietician mentioned several small meals, which I already do pretty much because of my abdominal fullness after eating and also by the end of the daY feeling quite full.  Hoping the anti-nausea or other? might help me to maintain.  Having colonoscopy Mon and port Wed, so finally things are progressing. Will report back after Wed appt with specific chemo plan, and I hope others can share any suggestions that might support my treatment and side effects.  Thanks so much everyone - very much appreciated. Wishing everyone the best. 

    best wishes

    Good luck with everything, thinking of you...

  • Bellen
    Bellen Member Posts: 281
    Liver Mets

    Hello all - Well, had one of the worst weeks. The prep for the colonoscopy was the worst ever had (very ill) - maybe aggravated by stomach/organ issues and I also have a stricture in my small intestine believed to be scarred area from previous radiation years ago.  Also had port put in Wed and next day had blockage pains probably from constipated induced pain meds given to me, plus sedation twice in few days, etc. So it has been an awful week - and haven't even started my treatment.  I have been told that there is an area that appears cancerous in colon (biopsy will confirm) and I have multiple spots in liver.  I will be having folfufi chemo cocktail with avastin this Fri start.  I know some of you have had this chemo - would you mind sharing anything at all that you can, in terms of how you felt right after and on it, medication or things that alleviated some of your symptoms, when did your hair thin or if you lost it and when that started.  I will go through the info on this site as well, as I know some of you have already given some great suggestions, and is there an area in this Cancer Survivor site that lists symptoms and what people used to help.  I am very nervous about mouthsores, as I was ravaged by them when I had cancer 11 yrs ago.  Also have lost 5 lbs which I am not happy about, but I had a very hard week with too many procedures/problems when I couldn't eat. I can't afford to lose weight and I was trying to put on ahead of treatment. Thank you so much for your suggestions and support so far.  

  • lizard44
    lizard44 Member Posts: 409
    edited September 2016 #52
    Hair thinning

    I had no trouble with  hair thinning badly through  my initial  8 Folfox plus Avastin treatments, nor with the 28 radiation sessions with the 5-FU 24/5 pump. I really was  thinking I'd avoided all those nasty side effects, then  I began a regimen of Erbitux  and Irinotecan.  That's when my hair really began thinning badly and like Sue, I began to resemble Gollum with bald spots. I had bought a wig early on in anticipation of hair loss, but found it was  uncomfortable in the summer heat.   Finally, I just had most of my hair shaved off, leaving  it a little longer on top.  Then, in an act of defiance, to show cancer it  did not get the upper hand, I bought some stuff to spike the longer hair and used a temporary dye to  dye it blue. My kids loved it and so did the  doc and nurses in the  oncology dept. The latest regimen had also caused a lot of dry skin and flaking;  when I take my clothes off it causes a little snowstorm of dead skin, so I  keep   a moisturizer at hand all the time and have cut back on showers,   resorting to sponge baths in between  every-other-day showers. The one benefit from the Erbitux is that while I've lost the hair on my scalp I have longer eyelashes than I've ever had in my life.   That benefit is counterbalanced by  an overabundance of facial hair, though- so I also have bushy eyebrows, a mustache and  this morning I  could have sworn I'd have to start shaving a beard or join the circus as a bearded lady! Hopefully all this will pass, the sooner the better!

    Right now I'm recovering from a radiofrequency ablation of a liver met done two weeks ago.  Actually,  there were three spots showing on the CT scans, but only one lit up on the PET scan.  The  surgeon decided to  tackle all three, which were  very close together, and ablated an area 3.5 cm total. I understand he    burned the area eight times so I have a nice little area of  charred, necrotic tissue in my liver, but he's confident he   got good margins, so, I'm hoping he's right. I'm stll pretty sore from the ablation, and   feel quite tired frequently, but the  three incisions plus one puncture have healed well and my bloodwork looked good today.  I go for a CT scan tomorrow to see how things are going.

    Everyone reacts so differently to different  treatments, that it's hard to  know what to expect, and it's certainly not an easy ride, but it helps to have people here  who have   been through  pretty much the same thing and who are willing to share their experiences. I hope your treament goes well with a minimum of side effects.

    Grace/lizard44

     

  • lizard44
    lizard44 Member Posts: 409
    Bellen said:

    Liver Mets

    Hello all - Well, had one of the worst weeks. The prep for the colonoscopy was the worst ever had (very ill) - maybe aggravated by stomach/organ issues and I also have a stricture in my small intestine believed to be scarred area from previous radiation years ago.  Also had port put in Wed and next day had blockage pains probably from constipated induced pain meds given to me, plus sedation twice in few days, etc. So it has been an awful week - and haven't even started my treatment.  I have been told that there is an area that appears cancerous in colon (biopsy will confirm) and I have multiple spots in liver.  I will be having folfufi chemo cocktail with avastin this Fri start.  I know some of you have had this chemo - would you mind sharing anything at all that you can, in terms of how you felt right after and on it, medication or things that alleviated some of your symptoms, when did your hair thin or if you lost it and when that started.  I will go through the info on this site as well, as I know some of you have already given some great suggestions, and is there an area in this Cancer Survivor site that lists symptoms and what people used to help.  I am very nervous about mouthsores, as I was ravaged by them when I had cancer 11 yrs ago.  Also have lost 5 lbs which I am not happy about, but I had a very hard week with too many procedures/problems when I couldn't eat. I can't afford to lose weight and I was trying to put on ahead of treatment. Thank you so much for your suggestions and support so far.  

    Wow- so sorry

    Sounds like you have really had a bad time this past week.   I hope you now have all the really nasty stuff behind you and the rest of it goes much  better and you are able to eat  to keep your weight up. Will be sending  positive thoughts  as you begin your chemo treatments that they do what they are supposed to do with minimal side effects.  Can't really help on the Folfiri plus Avastin as I haven't had that particular combination but am sure somebody will come along wih more specific help.  Hang in there and try not to stress too much- although that's easier said than done, I know.

    Grace 

  • nateswife
    nateswife Member Posts: 65
    edited September 2016 #54
    Bellen said:

    Liver Mets

    Hello all - Well, had one of the worst weeks. The prep for the colonoscopy was the worst ever had (very ill) - maybe aggravated by stomach/organ issues and I also have a stricture in my small intestine believed to be scarred area from previous radiation years ago.  Also had port put in Wed and next day had blockage pains probably from constipated induced pain meds given to me, plus sedation twice in few days, etc. So it has been an awful week - and haven't even started my treatment.  I have been told that there is an area that appears cancerous in colon (biopsy will confirm) and I have multiple spots in liver.  I will be having folfufi chemo cocktail with avastin this Fri start.  I know some of you have had this chemo - would you mind sharing anything at all that you can, in terms of how you felt right after and on it, medication or things that alleviated some of your symptoms, when did your hair thin or if you lost it and when that started.  I will go through the info on this site as well, as I know some of you have already given some great suggestions, and is there an area in this Cancer Survivor site that lists symptoms and what people used to help.  I am very nervous about mouthsores, as I was ravaged by them when I had cancer 11 yrs ago.  Also have lost 5 lbs which I am not happy about, but I had a very hard week with too many procedures/problems when I couldn't eat. I can't afford to lose weight and I was trying to put on ahead of treatment. Thank you so much for your suggestions and support so far.  

    Dear Bellen,

    Dear Bellen,

    So sorry about the awful week that you had. I really hope that you have an easier and better time of it this week. Hopefully your treatment will go smoothly now that prep (port and colonoscopy) is out of the way. 

    It sounds like you're having FOLFIRI for chemo. Here's my experience with those. 

    Irinotecan in me (everyone's different- try not to worry abt the side effects) causes stomach cramping, sweating, cold clammy skin, all over muscle weakness & fatigue

    Fluorouracil in me causes mild swelling, water retention, slight swelling/closing of the throat and tongue, acne, skin bumps, heat and flushing of the face and neck

    Here are a few tips:

    Atropine- make SURE to ask your doctor to add this to your chemo. It may be standard for everyone, but if it's not it should be. This drug alleviates some of the side effects of this chemo mix, especially cramping and diarrhea

    Hair loss- My hair started thinning after the 2nd round of chemo. It was all over, even thinning which is typical for this chemo mix. It slowly became thinner to the point that after 8 or so chemo cycles I had lost at least 80% of my hair. Then I got sick of it and buzzed it. Best thing I ever did :) It's growing back now, thicker than ever, possibly because my onc reduced all amounts of chemo due to platelet suppression. 

    Weight loss/ eating- I don't have a lot of nausea, just for like 2 days after chemo, so I haven't lost weight. However, the first two cycles were different, much worse and I couldn't eat. My doctor told me to eat whatever I could, preferably the richest foods I could stomach. If you are only able to eat a little, make it ice cream and cake, or something else high in fat and calories. Nutrition be damned. It's more important to keep your weight up.

    Mouth sores- Although I don't have sores, my mouth tissue has become very thin and sensitive. Children's toothpaste and mouthwash is the only kind I can use

    I hope this helps,

    Amy

     

  • Bellen
    Bellen Member Posts: 281
    edited September 2016 #55
    Liver mets

    Thank you Grace and Amy - Yes Amy, it is folfiri chemo + avastin. I spelled it wrong in my post. I appreciate any and all suggestions anyone can give me in terms of folfiri chemo cocktail or avastin, and anything they might have done or are doing to help with the side effects so that I might tolerate the chemo as well as possible. Thanks again.

  • JanJan63
    JanJan63 Member Posts: 2,478
    I've had the 5FU the first

    I've had the 5FU the first time I had chemo and the Folfox the second time. I didn't lose my hair either time. No nausea, either. I started to get a sore mouth with the 5FU and had purchased something with a name along the lines of Dr Ho's mouthwash or some such thing. It was really expensive and I used it once to try to prevent the sores. Then I used tonic water a few times and my mouth never did get sore. I was terribly fatigued and slep a lot but I was also undergoing radiation at the same time so I don't know if one or both caused that.

    I know nothing about the folfiri. I know the oxyplatin in the folfox gave me some pretty crappy neuropathy to the point where I was going to stop it after having completed 10 of the 12 rounds. Which I did stop at but for another reason.

    Best of luck with your treatments! I hope it clears up those nasty mets fast!

    Jan

  • Bellen
    Bellen Member Posts: 281
    edited September 2016 #57
    Liver mets

    Hello all - Now that I know that my chemo is folfiri and avastin, I created a post so that anyone on the colorectal site who had folfiri or avastin might respond with suggestions for me.  Many of you have, and thank you for your responses and suggestions.  It seems like Bill may have had a similar chemo combination as I am having.  Well wishes to all.

  • Bellen
    Bellen Member Posts: 281
    Dancer2 - did you start treatment

    Hello Dancer2 - Wondering if you started your treatment and if it is similar to mine - fulfiri + avastin.  If you see this message, hope you respond.  Best to you.

  • dancer2
    dancer2 Member Posts: 49
    edited October 2016 #59
    Bellen said:

    Dancer2 - did you start treatment

    Hello Dancer2 - Wondering if you started your treatment and if it is similar to mine - fulfiri + avastin.  If you see this message, hope you respond.  Best to you.

    yes, i just finished the

    yes, i just finished the third chair session this week...........i get avastin, with irinotican ( folfiri) correct me if I am wrong someone....they may throw some leucovorin? in there with the antinausea and steroids............then go home with the pack with the 5FU. I sit in the chair for hours,  take the pack home and wear that night, the next day, and go in on the third day and have it flushed and get hydrated...then am given the granix ( three syringes to take home and give myself which i can do)..........this go around i am staying nauseated longer and am getting some diarrhea.....the eyes are getting more blurry and so far have not had handfuls of hair fall out..........which in my case i expect simply because i bleach, color, bleach ad nauseum...........after next month i will be scanned and go from there..................have to ask the docs lots of questions, as some are so busy ( mine left a cancer center and started her own stand alone practice inside a hospital, so is still getting all the ducks in a row to put it in a silly way) I am not sure why i am taking the granix instead of the nuetropen or neulasta shot but i figure she knows better.....my last wbc was within range, but the rbc were a little low....she told me to eat oysters........oy vey........liver...uhuh....so mentioned liver pate so may give that a try, dress it up with mayonnaise or something and swallow whole......still juice when i am not to nauseated and that does help for a wee bit, as does ginger drops..........but what helps me, is stuffing a piece of bread down only i gained four pounds and sorry all you guys, ain't letting my backside get bigger since i am accustomed to being in shape.....xanax helps a bit too...........not sure how unless it relaxes t he stomach muscles and keeps acid production down...........I think of all of you and you are in my prayers..........just so glad to be a member here....by the way, i am to lazy right to proof read so do forgive the type's....Undecided

  • Bellen
    Bellen Member Posts: 281
    Folfiri + avastin

    Hello dancer2 and all - It seems like you are having very similar chemo to me - but I see they have added granix, which I assume is for your rbc - I did not have this. Had one treatment so far, which Onco said he scaled back to see how I would be - took anti-nausea for 3 days. One week after chemo, I got spasms near belly button (5 yrs ago diagnosed with small int stricture due to pelvic rad had for anal cancer 11 yrs ago - get partial blockages, so for past yrs have taken Miralax daily due to diet I follow).  I think what happened was everything ran thru me day of chemo and then a bit for next few days, so didn't take anything - then all of a sudden constipation - started the Miralax again, but it is not quick.  I really need to ask about laxative that works quickly, that someone like me with intestinal stricture can take - can't take laxative that blocks.  Need this discussion with Onco desperately next visit.  So I have a small int stricture and also probably a stricture where the CRC is - sucks!  Also had mouthsores and called to get a diff mouthwash - gave me Rx that swish and swallow - caused worst acid ever had all way through esophagus down into stomach.  Of course it was late Friday and can't even talk to Cancer Center - closed from 4 pm until Tues because of holiday. So have had 2 awful, awful days.  Trying to keep my weight on, but couldn't eat for few days. And to top it off - this is only my first treatment.  Hope I can get through this, and am able to find out what to take to feel the best I can.  Also take tremazepam sleeping pill, which gives me at least 6 hrs of sleep.  Can't seem to sleep without it, but know sleep is important, so take it.  Best to all, and wishing you well dancer2 with your treatment.  Let's keep in touch, as I think our cancer treatment is very similar right now.

  • dancer2
    dancer2 Member Posts: 49
    edited October 2016 #61
    hi bellen, just wanted you to

    hi bellen, just wanted you to know that i am given the granix for low wbc count, tho it is not that extreme.........so be it.....the nausea is bad but like i said, stuff a piece of bread down and that helps with the absorption of acid and then i will also take something like temazepam at the same time to calm matters down and that helps also........but always tell your doctor.....mine just told me that xanax was good for nausea also.........as for constipation, well my first go around with another doc and other drugs was horrible with a capital H as in Hell..........so this time around i just told this new doc i was going back to my health food store brand which works...........does not work the first two days after the pump is disconnected tho i take them but then add some MOM........well, that gave me diarrhea.............not fun........but the pills worked today and the nausea went down a lot......and i always take a sleeping pill or i'd never sleep, unless i have gone to dance class or gardened for hours..............i have no problem with doing without them when i don't need them......but always discuss this with t he doc...........since we are all different.........i do not have other issues but cancer..........unless we take in STRESSSSSSSSSS.......which i am sure we all have.........oh yes, i cannot take miralax..........tried it, and all it did was constipate me to the point of tears and on came the gloves and the good ole manual 'let's do it the lpn way'............no, water ( which i am guilty of not drinking enough of) and my whole foods colon laxative work for me and that alone makes the tummy feel better...........not sure why i was told to not really take vit. c, but will anyway..............keep in touch.