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Just diagnosed with cancer

jenben59
Posts: 144
Joined: Jan 2009

I do not know what to do. Can anyone help, please?

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

I am not sure how to help but you will find answers as well as better questions for your doctor here. I was diagnosed in September, and have gotten 25% through with chemo following surgery. Ask away, I think you'll get responses.

emrose's picture
emrose
Posts: 137
Joined: Dec 2008

Hello. Sorry to hear about this diagnosis. But it's great that you are being proactive and asking questions!

My husband was also recently diagnosed and I have found a wealth of information here! He is only 34 years old and this was very overwhelming at first. It sounds like you are looking for direction, and where to turn next. I absolutely understand that feeling. What is your current status? Have you had any treatment or started the "healing" process at all? There are people on this board who caught their cancer at Stage I and can tell you their story, and those who did not catch it until stage IV but are doing great... and everywhere in between! My husband was stage III (diagnosed Dec.9, 2008), meaning his tumor was quite large and it spread to 1 lymph node (out of 26 that they tested) but in a recent scan, it was determined it had NOT spread to any organs. He had surgery which removed all the cancer, and will start chemotherapy in a little while (after we vacation to Mexico!) to increase the odds that it NEVER returns. He is doing great and we have a very positive outlook!!

With so many advances in cancer research, you should not be too scared - but you must be proactive and seek out good care and do your best to lead a healthy lifestyle. There are many options out there, and the outlook for those diagnosed with colon cancer is very good these days. Statistics on the web are outdated, so don't get too scared reading random articles and numbers on the net. Talk to those with experience (here) and your doctors.

Do you have specific questions? I am definitely not an expert, but have learned a great deal by coming here. We have started juicing veggies to increase my husbands intake of raw, fresh veggies and will start living a healthier lifestyle. That, with surgery and chemo, is what will get him through this so that it becomes a distant memory some day. We are remaining confident that he's already tackled this, and just has take a few more steps (with his diet and chemo) to ensure it's a done deal! It's not an easy road by any means, but doable considering what's on the line! By staying positive, asking the right questions, and taking things one day at a time, this is a very treatable disease and you can power through it! Anyway, please feel free to ask your questions or vent your concerns and others (who have helped me so much) will be along soon I am sure!

keepnthefaith's picture
keepnthefaith
Posts: 37
Joined: Jun 2008

I am so sorry that you have to be here, but it really is a great place for support and answers to your questions. First thing to do, though, is remember to breathe. There will be people all along the way that will help lead you in the right direction and help you make the right treatment plans for your cancer. I know it is overwhelming at first - just hearing the word cancer made me almost crazy - I was completely caught off guard as I am sure most people are.
Tell us what you know so far about your particular diagnoses. It's okay if you don't know much at this point. I had Stage IIIa rectal cancer. Doctors at first thought it was Stage I so I had surgery (lower anterior resection) first, then after pathology report came back with Stage III, I went through 25 radiation treatments and 6 months of chemo - just finished in December 2008. Have to say that for me it wasn't as bad as I had anticipated and I am amazed that time flew by so fast.
Hang in there.
Felicia

jenben59
Posts: 144
Joined: Jan 2009

In late November I went in for a colonoscopy and was diagnosed with Diverticulitis. I thought, no big deal, have the surgery and recover. I went in December 12th for Diverticulitis surgery and two days after surgery the doctor comes in my room and tells me I have "at least stage IIIc colon cancer". How could a diagnoses of an illness be so different? I just finished two brain surgeries two and a half years ago. My whole life changed and it took just about everything out of me both emotionally and financially. I'm not ready to deal with this. Why didn't I have any symptoms? Colonoscopy test begin when you turn 50, I'm 49. I don't know how I'm going to deal with this. I would appreciate anything you could help me with. Thank you.

emrose's picture
emrose
Posts: 137
Joined: Dec 2008

My husbands story is very similar. First, diagnosed with diverticulitis (Oct. 07) but the DR said surgery wasn't necessary. Then - diagnosed as Crohns disease (June 08) and started treating that with meds. It got worse, so he went in for surgery for the crohns. We were told SEVERAL times that it was NOT cancer. Well, when my husband woke up from surgery I told him the news. What they found was, in fact, a tumor - NOT anything crohns related. And it was also stage III, like you.

Many people have NO symptoms. My husband is young and the DRs brushed off cancer because of it. He did start to have symptoms, but it was likely there for MANY years and he was just going on living, and had no idea. I have decided to start only thinking about what is in OUR CONTROL: what we eat, the meds we take, and going in for regular check ups. What happened in the past, happened... and unfortunately, it caused cancer. But NOW we know, and we will take the steps to get PAST this.

For you, like my husband, I see a couple good things:

1. You have already had the surgery! Wohoo!
2. With Crohn's or Diverticulitis, you may end up still having to take meds. So, this is different because you have to take different meds (chemo) but it's still a similar path that you were on
3. Diverticulitis would require major diet changes potentially. It is also good to live a healthy lifestyle now that you know you have Colon Cancer. You could end up being healthier in the long run because you will get more check ups, and pay attention to your diet more.

As you can see, I try to see the positive in things. In fact, we are looking at Cancer as BETTER than Crohn's. Crohn's is chronic and would potentially require a lifetime of heavy duty meds and more surgeries. We are now staying positive and believe we've taken care of the cancer right in the nick of time. Like you!!

You are SOOOOO lucky that you got that colonoscopy BEFORE you turned 50! And thank goodness they said surgery! So they could get it outta there!!!

Remember, one day at a time. Have you met an oncologist? Do you have insurance? Sounds like finances are a concern (I hear ya!!) and many cancer centers have financial specialists that you can sit down with. I would recommend that.

I know this is very hard to take in. You must be INCREDIBLY strong to have made it through brain surgery. I am very inspired by your ability to get through all of that, and now you just have one more thing to tackle. You are obviously very brave, whether you know it or not. Not many people can say they have been through what you have. This may not be as bad as you are thinking. Just think - they did the surgery and removed the cancer. Now you just have to make sure it doesn't come back. And we are all here to support you when you have questions.

Again - I am very new to this too! But, I bet others will come along with a bunch of great advice!! We will go through this together :)

Karmar
Posts: 43
Joined: Nov 2008

Dear Em,

Just read your post and many others and true should stay of the net-My question to you is that did they do a colonoscopy? I always thought that would find cancer? Or am I wrong-You see I was Dx Diverticulosis Dec.29th. Diet change that is actually working-Still have some residule pain-But no polyps or cancer. My concern now is that I am having unrelated surgery on the 21st for a total removal of Female organs. So your help would be greatly appreciated.
Karen

emrose's picture
emrose
Posts: 137
Joined: Dec 2008

Hi Karen

Yes - my husband had TWO colonoscopies, but they didn't find the cancer!! Even though the tumor was so large that the scope could not get through, it was assumed to be scar tissue from crohns. They did biopsies both times, but I guess they didn't get it from the right spot because they came back negative.

I wouldn't worry about your diagnosis though. My understanding is that diverticulitis is easily diagnosed by a colonoscopy.when my husband was first diagnosed with diverticulitis, he had just had a CT scan. What should have made us ask more questions was that he couldn't get the scope through!! Oh well, lesson learned!

Problem is now my husband doesn't trust any doctors!! Get a second opinion if you are worried, but if you trust your doctor then... Well... Trust him :)

I hope your surgery goes well!! Keep us posted

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

Hi,
I was dx at age 48 with st3 colon ca into 6 lymph nodes. Forget the whys and concentrate on the what to dos. You will get plenty of help here. I had surgery and a year of chemo. It worked for me and on jan 22nd I start year 12 still ca free.Other paths have worked for others. The thing that all the survivors have in common is that they actively do whatever they can to beat ca. All the best for a speedy recovery and a return to good health. Ron.

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Wow, I LOVE stories like your's Ron. It helps me to remember that cancer is NOT an automatic death sentence, thank you!

Jorie

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi Jenben,

First, pat yourself on the back for finding what is probably the best and only complete support forum on the internet. There is a lot of information out there... so much so that if you even try to read it, you are going to drive yourself crazy and scare yourself silly. In your first post you asked for help/advice.

#1 Advice: Stay AWAY from the internet and all the statistics you will find! If any of them were true, we wouldn't need this support board here because we all would have been dead 10 years before we were diagnosed. So, for your internet research, come here and ask questions. Trust me on this one, the best information you are going to get is from those who have been through it themselves!

#2 Advice: Don't work yourself up into a knot about how could you be diagnosed with diverticulitus and then be told days later that you, in fact, have at least a Stage III cancer. It is not uncommon for the two diagnoses to be confused because the symptoms of both and what they look like on scans are so similar. The "Colonoscopy tests begins when you are 50" is, unfortunately, a myth... one that is taking a long time to get through to the medical field that that is just not the case. People are diagnosed with colon cancer from the age of 20 thru to 99... so when would be the best time for a colonoscopy?

I, too, was originally diagnosed with diverticulitus. For six months no one could figure out what this chronic pain in my left side was. All my regular tests came back totally normal... but this pain was constant. I have a high threshold to pain, so my regular GP was baffled as to why *I* was in pain when there was nothing to indicate a source for it. He referred me to a gastroenterologist at the same time I had a CAT scan. Sure enough, the CAT scan showed a part of my intestine was inflamed... and he diagnosed diverticulitus on the spot. He explained that I would be put on antibiotics which would bring down the inflamation and when the antibiotics kicked in, the pain would disappear. I would still need the surgery but we would wait until spring (about 5 months later), but he referred me to a surgeon at that time. It was the surgeon who wanted to take a look before scheduling surgery some months down the road and it was him who found the tumour that had perforated the intestinal wall. Had we gone with the diverticulitus diagnosis and waited the 5 months for surgery, he said I would be dead within 3 months.

Like you, I figured a diagnosis of diverticulitus was no big deal... we'd clean up the inflamation and deal with the surgery in the spring. To be told you not only have cancer, but have a Stage III cancer that, if left alone, I would be a goner within 3 months... well, that's enough to turn your whole world upside down and inside out. You think you are in a bad dream and that you are going to wake up... but it just doesn't go away.

So, as was advised earlier, breathe!! Take some deep breaths and feel free to scream, rant, rave and vent here on this board. Get that out of your system and then, settle down and make yourself at home here. You will have lots of questions... to ask us, as well, to ask your own doctors. Buy yourself a notebook... seriously!! It will be a Godsend!! Write down every question you want to ask your doctors as they come up (trust me, you won't remember any of them if you haven't written them down).

But most important... take it one day at a time! You are at the start of a journey... one that will take you on for years and years! Don't think of the length of the journey but more of the day as it appears today. One day at a time. And write down those questions. When you do go to your various doctors' appts., take someone with you. It's amazing how much/little you hear, or you think you heard someone one way and the person who was with you will remind you what was really said. Write those responses down too :)

Welcome to our little club... a club that is the best to belong to, but not because you actually wanted to be a member ;)

Huggggggggs,

Cheryl

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Jen - Everyone's advice is right on -- Breathe!!!!

I echo the comment don't get caught up in the internet search, it just creates more stress. I too had a different diagnosis pre-surgery--ovarian cancer. Then didn't find the colon cancer until they were inside me. It seems the colon cancer went to my ovaries, so I'm considered stage IV. I too searched for why me, how could this happen, why didn't they find the colon cancer earlier. As some point you'll realize it just is what it is. Then you can really focus on fighting it. If you have questions there are lots of good people on this web site willing to discuss anything related to cancer. You've found a good group here. Best of luck to you and keep us posted on your progress. Traci

pamness
Posts: 513
Joined: Nov 2007

Please make sure you are being treated at a major medical center, where they have a huge amount of expertise in cancer - specifically, colon cancer.

Most major cities have medical center. Where are you being treated?

Pam

jenben59
Posts: 144
Joined: Jan 2009

I am going to MD Anderson. It's located in Houston, Texas and there is also a branch located in Nassau Bay on Nasa Road 1. Do you know of any medical centers?

jenben59
Posts: 144
Joined: Jan 2009

I've got a lot of other things going on right now. I recently lost just about everything in the IKE flood and still do not have my own place to live. I moved in with my daughter who can not take off from work to help me get through however many months of chemo I'll need. After being out of work for two years for my brain surgeries I used all my savings and retirement money to just live and pay off all the medical bills. I just don't know what to do now. Is there any help out there?

kmygil
Posts: 881
Joined: Feb 2007

Hi Jenben,

I am so sorry to hear about your diagnosis. To echo everyone else, this is the right place to come. If you are going to MD Anderson, you are ahead of the game.

Personally, I was 49 when I was dx'd, Stage II-B. I only had a colonoscopy because of family history and we found out that we are carrying a mutant gene which causes HNPCC (hereditary non-polyposis colon cancer.) This gene also causes endometrial, stomach,bladder, kidney and some brain cancers. Subsequently, my sisters were also tested and they are positive for this gene, as well. Look for family history of stomach, colon etc cancers & get genetically tested if necessary. Sometimes it is just sporatic cancer, meaning that there is no apparent reason for your diagnosis--just bad luck.

If you are too overwrought with your financial situation, you will not have the energy to deal with this. I suggest you start applying with Social Security for disability and whatever else you need. Also, many counties have programs which help with situations like yours. If you are a member of a church, you can find not only physical, but spiritual help there. Unless you are really, really ill, you will find that your daughter will not have to care for you to the extent you are imagining. Many people on this forum worked all throught their treatment. (I didn't, but I went in when I could.)

If you need to, please get on antidepressants. It is rough enough dealing with the idea of this disease without being clinically depressed. The actual physical treatment consists of one step at a time. Try not to think about the whole thing at once. It is a process, a journey. There is no "quick" fix. Each step will bring you closer to being disease-free.

Jenben, you are in a bad place right now, but everything will work out the way it is supposed to. I know you are feeling financially in a panic right now, but try to check all possible resources one by one. The most important thing is to get in a fighting and survival mindset. Any time you need to talk or ask questions, come here. This was my lifeline through my disease.

Just know that we are all pulling for you and keeping you in our thoughts and prayers.

Hugs,
Kirsten

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

Hi Jenben,

I'm sorry to meet you under these circumstances, but pleased to meet you nonetheless! I echo every sentiment here, especially the part about staying off the net. I unfortunately didn't follow that advice and was a walking wreck which made recovery more difficult for me. We've all been in your shoes, one shoe style or another and we're all here for you! There's no question that we don't throw out on the table and discuss.

I'm in remission from battle #3 and I've been in your boat financially as well. I lost my home, my children had to go and live with relatives, both my cars were repossessed, my pets went to willing friends and all my belongings were packed up and sent to storage. I went through chemo and radiation on an airmattress in a friend's spare bedroom. I was too ill to work throughout my chemo and my husband's job went belly up while I was in the hospital having my surgery. When he went to claim unemployment we found out that his employer had taken out unemployment taxes from his checks but never paid the gov't. They had no record of my husband working for the last 3 years!! When I was in the hospital, our apartment flooded and ruined all the documentation (don't ever store records in cardboard boxes! lol)that we needed to prove that he had worked. We were stuck on my disability only and have 6 kids. What a nightmare. Our credit being totally shot because of our lack of funds, it was really hard to find a place to rent after my recovery. We're just now making babysteps towards getting our lives back. One step at a time is my best recommendation. That and patience. Be patient with your body as it recovers. Love it and nurture it even though you're frustrated and feeling down over the new changes. I had to tell myself, "ok, this is my new normal" and I'm working with it. Be patient with your financial aspects and know that you'll be taken care of. We always are, in one way or another. Be patient with those who want to make you feel better, they have your best intentions at heart. I looked at my poor husband one day and shouted, "Cut the PollyAnna crap, if I want to feel angry, let me." He was only trying to help me. Most of all, love yourself and let people help you.

We're all here for you, just ask away.

Welcome to our group!

Jorie

jenben59
Posts: 144
Joined: Jan 2009

You seem to understand my situation, you've been there. I'm a very structured, "take care of business" kind of person. I don't do well without a home base and at least some basic structure. Not having a home after the flood, not working, and all this cancer "stuff" has just caused me a lot of anxiety. I'm trying to deal with it, but some days are worse than others. Right now, I seem to have no control over anything, not just the cancer. Do you know of any organizations that can help? Even just getting me back and forth to chemo? Any advice would be appreciated. Thank you.

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

Hi, I know finding out you have cancer can just throw you for a huge loop. You feel like nothing will ever be the same again...and you're right. It won't be the same, because you've faced down a life threatening illness, but there can be much good in your life, as well.

I don't know if you're a religious person, but I certainly find prayer to be so comforting.

As you progress through treatments and such, please come back to the board often and ask specific questions. There are so many special people here who will help you.

*hugs*
Gail

jenben59
Posts: 144
Joined: Jan 2009

I have read every reply I received and I feel much better. I truly am "not alone". Today, I just got up and accomplished everday "stuff". I put on my make-up, did my hair, and dressed to go out. The only cancer thing I did today was picking up my lab work before my first doctor visit on Thursday. I really appreciate all the compassion...I do not want to burden my children again after the brain tumors. First, I am going to try and follow your practical advise and experience and when I need to vent, come to this site. Thank you, you make a difference for me.

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

MD Anderson is one of the best if not the best place you can go. They will know and help you a great deal. So sorry to hear. A couple of other pieces of advice,

get a flu shot right now
take care of dental issues immediately before beginning chemo
keep copies of everything in a folder
allow others to offer help
realize you will have great days and terrible days
vent with people you can
ask lots of questions and fight for yourself

all my best
Chip

MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

The idea of a folder was a huge help to me. I also took a notebook to every doctor's appointment as by the time I got home I was so overwhelmed by all the info and the fear that I'd forgotten what he said. Write down everything. Put your doctor's phone numbers and addresses in the front as well as all the medications you're on. This way when you need quick information, you have it at your fingertips. It also helps to have your pharmacy number in the notebook. I found that I had a foggy brain after having had 2 major surgeries in a 4 month period plus chemo. My notebook was a lifesaver at times!

Hugs!

Jorie

jenben59
Posts: 144
Joined: Jan 2009

The oncologist went over a lot of basic information and answered questions. What I wondering about is she set up a MRI and CT scans for my abdomen, chest and brain. The MRI for the brain I understand because of my previous brain tumors, but why the others? I am also set up to have a line put in my chest and I'll have to use this small pump with one of the medications running for 2 days a week and then go to MD Anderson for an IV once a week. How do you sleep with a pump and needles in your chest? After the scan and pump is installed, I start chemo on January 15th. You know, I am so scared. I don't know what's going to happen, how I'm going to physically feel, how I am going to be emotionally, am I going to be cured? If anyone can help me, I'd really appreciate it. Thank you very much.

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

I am three courses into this type of therapy, The port is fairly painless once the initial procedure to place it heals. You only get stuck once and you really don't have much discomfort after that from the needle. You'll need to sleep with the pump and it takes a little modification. I use a lanyard from my ID card at work and hang it around my neck. I then sleep on my back or side and it stays out of the way. I had the same apprehensions, it will not be as bad as you think. Regarding the scans, they always scan wider than the area of the cancer to detect any metastasis or cancer growing elsewhere in the body. I found while its no walk in the park, I feel better each day after chemo and its not as bad as I thought.

jenben59
Posts: 144
Joined: Jan 2009

Maybe I'll get better and adjust to things once the chemo starts and I have a routine. So far, this is the only Web site that answers questions and gives me support. I really don't have a support system where I am staying right now. Thank you.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

But, it will be one that will bring you back to NED "no evidence of disease"...hang on tight and roll with it. we got your back. and between all of us in here we have all the answers you need also..........keep the chin up, it will get a lot easier before long...promise....God Bless ya.......and He will.........

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I had a pump on 24/7 for 6 weeks. I, too, was worried about sleeping. I learned to sleep on my back. I am fortunate that I have an adjustable bed (DH & I both have reflux and it helps) so I would raise the bed, settle in and put the pump on a pillow beside me. It had a long line attached, so even if a moved around, I never had a problem. The biggest problem was remembering to grab the pump when I got up in the night to go to the bathroom! But that became routine very quickly.

As to the CT scans, I had that before I started chemo as well. They checked my liver and pelvic area. They want to be sure they see everything going on to give you the best treatment.

Vicki

RuthieAnne
Posts: 3
Joined: Jan 2009

I went through 12 rounds of chemo with the pump. The hardest part for me was the weight of the pump pulling on the needle inserted into the MediPort. During the day, if I wore jeans and put the belt for the pump through the belt loops, it supported the weight of the pump so well that I hardly noticed it. At night, make sure to leave enough tubing loose that you can move but not so much that it gets tangled. After a while, you won't even notice it.

Anonymous user (not verified)

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jenben59
Posts: 144
Joined: Jan 2009

First, is it easy to knock the needle placed in your chest out, if you toss and turn a lot when you're asleep? Second, if I do, what am I supposed to do about it? Third, Does anyone have to be on an IV at the facility one day a week and on the pump? Fourth, how do oncologists decide how often you have to take the chemo and in what form? What I've read about, some people go for three days and then are off for 21 days. (There are several other "plans" as well) Some people get to take a pill. I really appreciate the help from everyone. Thank you for not making me feel stupid, too.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Jenben... those are all very good questions! Once you've started your chemo therapy, a lot of this just falls into place and we understand it without really thinking about it... so when the questions are posed, it takes a little thought to come up with the answers :)

1) Naaa... the needle is pretty secure and I wouldn't worry about it too much. Once it is in the port, then they do tape it down with a big square of transparent adhesive that really does keep it secure.

Now... having said that, of course I have to babble a personal story of mine. Me and the dog were lazing around on the bed during one of my 3 days of being on the pump, watching the finale of Canadian Idol. I noticed that the area around the adhesive was damp and checked. The needle still appeared to be in fine but there was definitely a wetness under the adhesive that was seeping through. Well, darn!! There was still 30 minutes to go of the finale for Canadian Idol... so I called my friends, Mimi and her hubby Nathan, who live in the apartment upstairs from me and said, "Hey guys... something weird is happening with the needle and port for my chemo so I thin a trip to Emergency might be called for... BUT... there's still half an hour of Canadian Idol, so how about if I meet you in the carport at 11pm??" Of course Mimi freaked out but I reassured her that we would only be sitting around Emerg for that long anyways and chances are they won't have the tv turned on to Canadian Idol ;)

So, in answer to your question... don't freak out, but if it were to come out then you can go to your nearest hospital emerg and they can fix you up. Meanwhile, I found out from my chemo nurses that there is a shut-off valve to the port, so you could just shut that off until you got yourself to Emerg or to the chemo unit where you get your chemo hooked up.

2) You know, the nice thing about chemotherapy is that it is therapy designed for YOU and for your cancer. We can all be very generic here and say we all have a particular cancer (IE: Colon Cancer or Rectal Cancer or even more generic, Colorectal Cancer), and yes, there are "standard" therapies for each one. BUT, your chemotherapist (usually that's your oncologist but it could be different from state to state) can take in your personal situation, your health, your age, and numerous other factors and come up with a therapy that will best benefit you. For instance... my tumour had perforated through my intestine, maybe yours hadn't. My bet is I weigh a lot more than you do... so weight would come into play as to how much chemo I would get vs you but that we'd both have the same benefit. I happen to, other than the cancer, be as healthy as a horse, have a strong heart, no other organs are affected, I don't smoke, I don't drink, blah, blah, blah. So that would be make my treatment different than say someone who is very thin, has heart disease, diabetes, smokes like a fiend and is an alcoholic. Ok, those are extremes, but you get my drift... no two people are exactly alike and thank goodness we aren't all given just one kind of treatment because we'd all react differently... yet in the old days, that was how it was done.

3) I think I answered the question "how do oncologists decide how often and what kind of chemo you'd need" in #2, but, I'm not an oncologist so therefore don't have the training they do. Let me tell you, those oncologists are very, very special people! Not only do they have the training as to the kinds of chemo and what works best and why, they also take into account you as a person, your lifestyle, your work if you are still working, or if you aren't working, your state of mind. So many things come into play.

4) Although this was not a question, I'll give some other advice here too... do NOT be surprised or anxious if your oncologist up and changes your treatment plan at any given time. Some people get soooo upset and make themselves depressed, when in fact, your oncologist is monitoring the plan they have put you on and if they see you are having problems with it (too sick, neuropathy, pains, whatever) then they will adjust it for you. They are thinking about what is in the best interests of YOU, not what most people can or can't tolerate. My oncologist told me at the beginning she was going to bombard me with as much as my body could take and that we would be aiming for 8 cycles every two weeks (4 hours on IV at the Cancer Clinic and then 48 hours on the portable pump). So I thought... ok, 8 cycles, I can do that! Then I also had to have 6 weeks of daily radiation.. so she changed the chemo treatment to the pill form. She said it would be easier on my system while going through the radiation since the radiation will do a fair amount of abuse to my body and energy, but she still wanted me to have chemo in my system. The pill form was a milder form but works really well in conjunction with radiation. Once the radiation was finished, it was back to the IV for four hours and the pump for 48 hours.

You ask anyone else here on the board and they will give you either a similar routine, or a completely different one... and that's because we are all individual people with oncologists who are looking out for our best interests and not as a group as a whole :) There's also a big difference between "after surgery" chemo, "before surgery" chemo, or "Maintenance" chemo. So it really depends where people are in their journey to fight the beast :)

Ok... do you think I could have babbled anymore??? LOL!! But if I missed a question or you come up with more... you know we are all here to do our best to answer them :) Keep those questions coming!!

Hugggggs,

Cheryl

jenben59
Posts: 144
Joined: Jan 2009

What kinds of meds are you on and how come you have not lost your hair? I hope this doesn't offend you. If I lose my hair, so be it...I've already lost it twice for brain surgery.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Jenben, right now I'm not on chemo at all. I finished my 12 treatments at the end of Oct 2007. I had my right adrenal gland surgically removed at the end of June 2008 (very painful operation... I don't recommend that one as a fun summertime activity) and now I'm about to have a Lung Ablation procedure. It was scheduled for Dec 30th, but got rescheduled so it will be a week from this coming Tuesday (Jan 20). The reason for both the adrenal surgery and the lung ablation is to avoid more chemo if we can. Of course, if we have to, we will be going back on it. We thought we would have to because of the mets in the lungs, but we are a candidate for the RFA procedure which is much less invasive ;)

BUT, when I was on chemo (5FU, Leurovin, Oxalpilatin and during radiation, the oral one that I always forget the name), I was lucky. I have very very thick hair (you can't tell in my picture because it is tied back and in a french braid at the back) so it thinned out. I lost a good third of it, but no one noticed because 1) it thinned out all over and evenly and 2) I have so much that losing a third isn't even noticeable to others, even my close friends.

I'm the same as you though... if I were to lose it, so be it... I know it would only be temporary and then it would grow back in :)

Hugggggs,

Cheryl

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jenben59
Posts: 144
Joined: Jan 2009

Nana B, what kinds of medicines are you on?

polarprincess
Posts: 210
Joined: Aug 2008

if you have a dog be careful- i woke up one morning and my dog had chewed the pump shoulder band thing and also a tiny hole in the tubing. I was horrified. When i am on the pump, i sleep in the couch kind of in an upright position so my needle isn't affected, and i also put the pump on a table beside me.

jenben59
Posts: 144
Joined: Jan 2009

I don't have dogs, but I'm living with my daughter, after the flood, and she has two cats. The concern with the cats are the litter boxes. I've read something about the cat litter boxes are not good to be around. I'm not sure why, but I think the dust from the litter can become air borne. If you know anything about this, please let me know. Thanks.

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msccolon
Posts: 1956
Joined: Oct 2004

and the germs of the waste! Same reason you stay away from cat litter while you are pregnant! There's nothing in there you want to expose yourself to when your immunity is compromised!
mary

Faith88
Posts: 55
Joined: Sep 2007

I just wanted to add to the comment about cat litter and being on chemo.
My DH went on chemo and we were told the same thing, he shouldn't be around cat litter boxes and make sure we use disinfectants all the time, etc.
Well, we have a cat and were not about to get rid of her or her box, so we got a covered litter box and I cleaned it (his usual job) for 6 months.
He never had any ill effects from it, or got sick at all --flu or colds etc.
Just wanted to add that you can live with animals and the chemo with some modifications.
Best wishes to you.
Faith88

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jenben59
Posts: 144
Joined: Jan 2009

I have good news! I thought I was to start Chemo this Thursday, but it was a doctor's visit about all my CAT scans and MRI's. Anyway, as far as the doctor can tell there is NO cancer in my liver, abdoman, lungs, or my brain! This is the first good news I've had since November. It made my day. I told my doctor about this Web site as well and how kind everyone has been. Anyway, chemo does start on Wednesday. So, I'll let you know how it is going and take any advice your willing to offer. Thank you all again for your comments and support.

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MoonDragon
Posts: 194
Joined: Jun 2005

Yay!! Congrats on not having cancer in your other organs!!! What a relief!

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daydreamer110761
Posts: 497
Joined: Dec 2008

Just wanted to jump in and add my 2 cents. I go in for treatment number 4 on Tuesday, haven't had any trouble sleeping with the pump - and I sleep on my stomach (but I don't roll around alot either). I just pull the tubing out a little extra, and put the pump under my pillow, and I arrange the pillows so that the needle/port is sort of laying at the edge of the pillow and not sqaushed on the bed. My biggest fear was the cat wanting to play with it, but that hasn't been an issue either - she seems to know and stays away from me those 2 nights.

The only real problem I had was this last time and going to a "closer and more convenient" place, they didn't tape it down which I thought was wierd, and after going to the bathroom the tube got stuck under my breast and pulled apart. I had blood spurting from one end and chemo from the other, and panicked (I hate blood anyway). My fiance came in and calmly stopped the IV with the little plugs - had I not been freaked by the sight of red it wouldn't have been hard to do that myself, I just wasn't thinking! Needless to say - I learned a valuable lesson and will stick to the cancer center!

By the way - I hadn't heard anything about the cat little deal - I have a covered box, but I change the litter - should this be a great excuse to make Nick do it??? LOL!

jenben59
Posts: 144
Joined: Jan 2009

You sound like you are doing really well after your chemo...good for you. I was tickled when I read you were making banana nut bread and blueberry bread, I really love that homemade bakery...but I had to settle for a banana and a blueberry bagel!

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