New, recently diagnosed and a million questions

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rachpach
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Re: New, recently diagnosed and a million questions

Postby rachpach » Thu Aug 04, 2011 6:22 pm

Hi Bluwillow,
So sorry about your diagnosis,
I know what you mean....when I was diagnosed all I heard was that c word...and from what I know of chemo then, it was nasty stuff and I would lose my hair. It did'nt happen thank god and I found the first lot of folfox chemo relatively easy compared to the horror stories I then knew of. Hey, this is'nt happening? what?! It's just I dunno...getting used to the fact you have the c word which takes a long time so go easy on yourself here and just reach out when you feel comfortable. I hate referring to that c word, it's too much to comprehend. And it's taken me ages to have confidence to even post in here. Know what you mean too about finding it difficult to discuss face to face. I find with people I don't know its almost like oh..oh dear..your so young..you have cancer...label..maybe not but my silly head does that to me sometimes. I hope you stay strong, and take each day as it comes. Yep its ongoin and takes a lot of energy being "In the Ring" with this, be gentle to yourself and share with those you know will be supportive. I wish you all the very best and take care
28/8/09 dx CRC age 30
9/09 Stage 4 Multiple bilobar Liver Mets
10/9 Folfox
6/10 Finish Folfox
3/11 Colon stent, obstruction
4/11-Start Folfiri
10/11-Finish Folfiri
11/11 Scan:stable disease
12/ 11 Meet with Surgeon re Colon Resection

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pmterra
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Re: New, recently diagnosed and a million questions

Postby pmterra » Thu Aug 04, 2011 9:11 pm

bluewillow wrote: The doctor said there would be 3 types of drugs or combination of chemicals administered. I think my eyes had already glazed over by then. Seems like it might be important to know.


A good thing to do is have someone go to the doctor visits with you and write down everything that is discussed or bring a small recorder with you. I'm sure your eyes had already glazed over, it's a very overwhelming time for you. My husband didn't hear "you have cancer" he heard "you're going to die" and everything after that just went right over his head those first few visits. As far as the port goes, it really isn't something to be worried about. For most people, you can't even tell it's there. You can still wear strapless dresses and tops. If you're really not happy with it, scarves have become very popular and there are some beautiful ones to choose from. One mistake we made was to let an intern put it in under the doctor's supervision. Insist on the doctor doing it and make sure he's done a thousand of them before!!

I hope you will find the strength to love what you see in the mirror. I have some dysmorphic issues myself so I can imagine how you feel about gaining weight and losing your hair (which you probably won't btw with the chemo for colon cancer). Seeing a therapist for all these issues is probably a good idea. There are people who specialize in cancer patients/families. If you have a Guilda's House in your area, all of these things plus a slew of other options are available to you usually free of charge. Sending you lots of prayers and good thoughts. :)
caregiver to survivor husband
Stage 3C - Colon
surgery June, 2008
6 mo. chemo/FOLFOX & Avastin
June 2015 - 7 year survivor :)

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TheBurn
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Re: New, recently diagnosed and a million questions

Postby TheBurn » Thu Aug 04, 2011 9:46 pm

My one piece of advice is to tell your closer friends who might be able to assist you with things and let them decide whether they can help. My friends were generally more angry when I wouldn't ask for help. There are likely to be some tiring days ahead on chemo and days when a little company will be welcome.

Also, do a search on "gas card" as I seem to remember a recent thread that maybe there was some assistance from the American Cancer Society.

Lastly, you have found a great group here full of support and caring, with some people who will sound like doctors they know so much. You'll find yourself addicted to this place and there's nothing wrong with that - it's a place to cry, scream and laugh.
Living Life Colon-Free
-----------------------------------------
52
RC 7/20/10
Proctocolectomy/ileo 10/22/10; Sx Path - T3N1M0
Folfox - 1/12/11; Xelox - 2/23/11
Xeloda - 3/16-6/21/11
Chemo-rad 6/29-8/8/11
NED 8/15/11

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juliej
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Re: New, recently diagnosed and a million questions

Postby juliej » Fri Aug 05, 2011 5:24 pm

bluewillow wrote:
juliej wrote: Ports (the artificial device you mentioned) sound worse than they are. Julie

Yes, I was referring to the port. The thought of having something foreign in/on my body makes me cringe, not to mention the vanity aspect. I enjoy wearing strapless or spaghetti strap tops and feel like it would be like wearing a sign. I'm also concerned because I know I need to continue my regular working out to maintain my strength.

I felt the same way, but now I don't even think about it. It's so much better than destroying your veins with chemo, let alone the advantage of not having someone fish around to find a vein each time they take blood or give you chemo. It does make a very small lump under your skin, but I still wear tank tops with pretty skinny straps without it showing. I was also concerned that I'd be stuck wearing loose tops, but I can wear fitted tops like yoga clothes just fine. It only shows with something super-tight like a leotard. Honestly, I work out a lot and no one knows I have it.

bluewillow wrote:The pump thing is upsetting, too. I know how I am and will likely refuse to leave the house with such a contraption in tow. I don't know what treatment I will be on. Seems they should have given me that information. The doctor said there would be 3 types of drugs or combination of chemicals administered. I think my eyes had already glazed over by then. Seems like it might be important to know.

I can't imagine why they didn't tell you which drugs you'd be taking. One of the most important decisions a cancer patient makes is where to receive care. I don't know how big Rogers, Arkansas is, but if you have an opportunity to move to Louisville, I'd take it -- just because it would have a larger cancer center. The Norton Cancer Institute in Louisville is an NCI Community Cancer Center which means you'd get excellent treatment there.

Wish I was there to take you for port surgery on Tuesday! Ask the surgeon where he will put the port. Usually you have a choice of right or left side. You can also talk to him/her about the exact location. I think the hospital will require that someone drive you home, in case you're a little woozy from the anesthesia. I only had a local for my surgery so I was done in just a few hours. But they keep you longer if you have the full anesthesia.

Let me know how your liver biopsy goes on Monday!

Hugs to you,
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Fri Aug 05, 2011 6:06 pm

juliej wrote:...but if you have an opportunity to move to Louisville, I'd take it -- just because it would have a larger cancer center. The Norton Cancer Institute in Louisville is an NCI Community Cancer Center which means you'd get excellent treatment there.

Wish I was there to take you for port surgery on Tuesday! Ask the surgeon where he will put the port. Usually you have a choice of right or left side. You can also talk to him/her about the exact location. I think the hospital will require that someone drive you home, in case you're a little woozy from the anesthesia. I only had a local for my surgery so I was done in just a few hours. But they keep you longer if you have the full anesthesia.

Let me know how your liver biopsy goes on Monday.


It is very likely that I will make the move to Louisville. Not only would I be closer to more of my family, but they would feel a lot better having me closer. It would be less of a worry to them. My sister told me that there are excellent cancer resources in Louisville. They keep messing with me on the procedures next week. Initially when I called to get more information on the liver biopsy, I wasn't feeling at all comfortable about it. They initially had that scheduled at a local hospital. When I called the doctor's office freaking out because of how uncomfortable I was after talking with them, I was told that they really weren't that comfortable with it either because our local hospital seldom does these procedures. They were trying to consider the distance I have to go. Anyway, that is getting resceduled at a different location where they do the procedures frequently. On Tuesday there was apparently some miscommunication and what I thought was the port surgery is actually a consult. The actual installation will be at a different time. It was kind of a mess because a good friend of mine had arranged to take both days off to go with me, now it's all changed and I'm not even sure when it will be. Has to be pretty quick though, since my first treatment is scheduled for a week from Tuesday.

SugarBubbie
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Re: New, recently diagnosed and a million questions

Postby SugarBubbie » Fri Aug 05, 2011 8:55 pm

sorry your having to deal with this......

I currently have a port for my breast cancer treatments. I much prefer it over IV or PIC line. I did PIC line back in 2008 for my xeloda and oxi for rectal cancer. The port really is so much easier.

Keep that pretty smile going. Everyone on here is your friend and will stand by you.
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
Taxol 12 weeks FAC 4 tx, 31 radiations
5 year survivor certificate from MDA 2012 for anal cancer
DX triple neg bc oct 2015 4 rounds adriamyicyn, 20 radiations
"Positivity has no downside"

Surroundedbylove
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Re: New, recently diagnosed and a million questions

Postby Surroundedbylove » Sat Aug 06, 2011 8:39 am

So sorry for the diagnosis but I'm sure you'll find this board incredibly helpful.

A few things to add:

1. The opportunity to have an NCI facility is Louisville is great. If I were in your shoes I wouldn't hesitate it getting closer to family for help and to an NCI facility.

2. Call the American Cancer Society and ask whether in your area they offer Road to Recovery (drives to chemo, radiation, and doctor appointment by volunteers) or if they offer a gas card.

3. If you do move, make sure your insurance will work across a state line.

4. On Xeloda, 5FU, oxalipltin, and avastin it is very rare that people lose their hair. Some people with fine hair to begin with may have thinning of their hair. I didn't lose any hair at all.

5. I echo the comment to have someone go with you to all appointments. Also, start a notebook and ask for printed reports of everything - lab reports, colonoscopy reports, pathology reports, etc. They even have print out information for each chemo they give. This will help you have a resource to go back to - especially when we ask you a question back! :-)
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
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Bev G
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Re: New, recently diagnosed and a million questions

Postby Bev G » Sat Aug 06, 2011 9:09 am

Hi again,

What a pain in the A$$ about the port plans. It's a perfect example of what I meant when I said

"You will have to cope with lots of stuff...the rest of your diagnostic tests, plans, likely changes of plans, chemo, possibly (if you're lucky) surgery, lots of fatigue, many tears, etc. ect."

My plans got changed so often after I was diagnosed my head was spinning.

Bravo on your plan to look into moving to Louisville, close to family and an NCI facility.

I don't know what you think about this, but I might want to speak with an actual liver surgeon before your biopsy, and then see what I could do to have him/her do it. I was initially insistent that I would NOT have a liver resection without someone proving to me the lesion in my liver was cancer (ie biopsy first) but was subsequently persuaded (by my liver surgeon) that this was entirely unnecessary. The location of my tumor precluded biopsy anyway, but I would just really, really make sure you need one, and if so, have a specialist do it.Not trying to be scary, but they are not without risk. I would want someone who had done hundreds of them.

YMMV.

All the best to you, hang in there,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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KellyBelle
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Re: New, recently diagnosed and a million questions

Postby KellyBelle » Sat Aug 06, 2011 11:47 am

betsydoglover wrote:Hi Susan -

Bev and others have given great advice. Diagnosis is a shock and we all remember the overwhelming things you are feeling.

Please do not worry about your hair! Your first protocol will likely be 5FU/oxaliplatin//Avastin or Xeloda/oxaliplatin/Avastin. Neither of them cause hair loss in most patients - perhaps some minor thinning, but nothing even your hairdresser would notice! There are other crc regimens that can cause hair loss, but they aren't normally the first round treatment. So, please try not to worry about your hair and concentrate on getting well.

Good luck and Welcome!


Ditto! I can't add much to what everybody else has said, but I think it's common that one of the first thoughts of a newly-diagnosed cancer patient is, "my hair!" Mine thinned a little bit, but not enough for anyone to notice except for me and my hairdresser. I just used a few more products/hairspray and nobody could tell the difference. I may have lost up to 25%, but we have a lot of hair.

Good luck, and please read this board... there's a lot of valuable information here; even going back to the second and third pages, you'll probably find a topic that applies to you.

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

SamT
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Re: New, recently diagnosed and a million questions

Postby SamT » Sun Aug 07, 2011 8:25 pm

Susan,

On your questions ...

Perhaps write down the list of people who will be your "team" in your recovery from cancer. Maybe a family member (or two), a doctor or even clergy; your wider support group can include this on line community. Try to choose people who are frequently available, supportive, wise and strong.

Then put together a plan -- the conventional medical portion is mostly outlined by the oncologist, but there are home care duties (diet, exercise, mental relaxation ...) that can give you real "part ownership" of your recovery. Psychological approaches to cancer can have a huge impact on side effects.

Gather the team when a tough decision needs to be made; make tough decisions with the team, without delay.

All the best,
SamT
46yo dx 12/5 CC w/50+lvr mts
2/6 colon rsxn
FULFOX w/avstn 3/6-9/6
10/6 insert lvr pump: 9 biops-NED
6/7-3/8 lvr pump FUDR,Irin
11/8-3/9 fudr,Irin
4/9 opn ablatn,lvr rsxn
5/9-6/9 Fulfiri
11/9-now,Erbx/5FU/Irin
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Monique
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Re: New, recently diagnosed and a million questions

Postby Monique » Sun Aug 07, 2011 9:50 pm

Hi, Susan

As with you, when I was first diagnosed, I had a bazillion questions. So, keep on asking, as this site is a valuable resource. I've met some great friends here, who could provide me with the support that the "healthies" couldn't.

I wanted to let you know how much I related to your comment, "As silly as it may sound in the overall scheme of things, one of my biggest fears is not being able to stand to look at myself." Nope, not silly at all, as I felt exactly the same way. I certainly wasn't thrilled about the potential loss of hair, my PICC (Canadian cancer clinics are more inclined to suggest PICCS as opposed to ports), or the other side effects of chemo. That said, I didn't lose all of my hair (some don't lose any), and while my PICC was an annoyance, no one noticed it, not unless I showed it to them. In fact, by appearance alone, strangers wouldn't have guessed that I was under going treatment.

I think that you can easily wear spaghetti strap dresses etc. and if you're worried about your port showing, then you can simply disguise it with a shawl.

You sound like a strong, fantastic person and I strongly suspect that you will be able to stand looking at yourself, and, perhaps more often than not, you'll like what you see. When I was undergoing treatment I gained some weight, which I wasn't pleased about. I think this was a result of the steroids I was prescribed. In my case (and please consult with others), not only were the steroids unnecessary, but they were detrimental to both my physical and mental well-being. Frankly, I didn't miss them when, half way through treatment, I stopped them.

In regards to chemo, following is some advice that I posted here a few years ago regarding Folfox. I should let you know that because I was young(ish) and relatively healthy my oncologist decided to, in his words, "throw the book" at me:

...I too was extremely apprehensive about the chemo. However, while my chemo experience hardly resembled a merry walk in the park, it was not nearly as awful as I had expected it to be. In fact, some people on Folfox experience little side effects and continue to work (although I was not one of them) and lead productive lives.

I found my treatments to be cumulative, meaning that as time went on the symptoms increased. Although everyone is different I found the first two days following the infusion okay (mostly because I was jacked up on steroids) and the next three days I was often flat on my ass feeling nauseous, exhausted, weepy and depressed. Not a lot of fun. However, following those three days, things improved slowly both physically and mentally. In fact, by the end of the second week I was feeling pretty normal.

One thing you might want to plan for is crazy bowels: constipation (due to the Oxaliplatin) followed by intense diarrhea (due to the 5 FU). You might want to invest in a stool softener (or some prunes, they did the trick for me...but use sparingly) as well as some Immodium. Also, STAY HYDRATED, as this will help considerably. Oh yes, and wash your hands all of the time to prevent catching colds etc. Perhaps a good way to prepare for the effects of chemotherapy would be to pre-make some food. For instance, make a big batch of healthy stew and then freeze it in small containers so that you can access it quickly. As far as walking goes, by the third month of my treatment I could barely make it to the vegetable garden and back. Gardening I could do, but slowly and methodically. However, my blood counts were really, really low and an older woman at the cancer clinic, who was having the exact same treatment as me was running marathons. So there you go, it depends on the individual.

Side effects:

Nausea: yes, I experienced some nausea, but the anti-nausea pills took care of it. However, I would suggest not eating your favourite food following an infusion as you may develop associative nausea. I, for one, have never been able to look an enchilada in the eye again. In fact, after awhile I purposely ate boring food.

Diarrhea: O boy, did I ever. Luckily a dose or two of Imodium seemed to do the trick as did the BRAT diet. Try and catch your diarrhea quickly, lest you develop anal fissures.

Fatigue: As my blood counts were low, I was quite fatigued. However, about half way through my treatments my oncologist lowered my dose (twice) and my fatigue lessened considerably.

Hair Thinning: About three months in I lost about half of my hair, which I found very upsetting. For some reason I waited a while before cutting my hair short. Why? I have not the foggiest, as the short hair looked a hundred times better. That said, I have always had fine hair and I've noticed that those who have thick hair, the hair loss is barely noticeable. Some people buy a wig, but I mostly wore baseball caps. Further, a lot of people don't have any issues with hair loss.

Sensitivity to cold: Yes, but I got used to it by basically avoiding touching or eating anything cold for the first week following an infusion. By the second week I was consuming ice cream by the barrel (not recommended).

Dry Eyes and Skin: Yes, but skin cream helped (on skin, not eyes). One odd side effect was that every time I cried my eyes would sting like crazy.

Steroids: I found, over time, that I was able to reduce my steroids, and then quit them altogether, as they made me a wee bit psychotic. That said, If I were you, I would try and start with the full dose and then, under doctors orders, slowly reduce your steroid dose if they are having a negative effect.

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juliej
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Re: New, recently diagnosed and a million questions

Postby juliej » Mon Aug 08, 2011 5:12 pm

Monique wrote:Steroids: I found, over time, that I was able to reduce my steroids, and then quit them altogether, as they made me a wee bit psychotic. That said, If I were you, I would try and start with the full dose and then, under doctors orders, slowly reduce your steroid dose if they are having a negative effect.

It seems like steroids act differently on everyone. They made me wired, which meant I got a ton of projects done over the first 3 days of every chemo cycle! :D I had to take an Ativan to sleep at night, but since it helps with nausea too, it was a win-win. If they don't automatically give you Ativan, ask for a prescription. It's great to have on hand for anxiety, especially that terrifying first month or two.

I'm with Bev about the liver biopsy. Find out if you really need it.

Big hugs to you!
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Mon Aug 08, 2011 8:34 pm

Monique wrote: ... Steroids: I found, over time, that I was able to reduce my steroids, and then quit them altogether, as they made me a wee bit psychotic. That said, If I were you, I would try and start with the full dose and then, under doctors orders, slowly reduce your steroid dose if they are having a negative effect.


I didn't know that steroids were part of the equation. That scares the hell out of me too. For years I've worked at keeping in shape and at a healthy weight. The last time I was on steroids even for a short time, I blew up like a balloon! I've already gotten fat as a pig the past few of months to the point I can't stand looking at myself in the mirror. I'm trying to wrap my head around reversing that trend in the midst of everything else, and now you're telling me that I'm going to have to take pills that are going to make me fatter? This is all just too much to process.

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Mon Aug 08, 2011 8:38 pm

juliej wrote: If they don't automatically give you Ativan, ask for a prescription. It's great to have on hand for anxiety, especially that terrifying first month or two.

I'm with Bev about the liver biopsy. Find out if you really need it.

Big hugs to you!
Julie


I have a prescription for Xanax, but rarely take it, and when I do, I usually only take 1/4 of a pill. I am very sensitive to most depressant type medications. Some I can't take at all because even in small doses, they completely knock me out.

grasshopper
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Re: New, recently diagnosed and a million questions

Postby grasshopper » Mon Aug 08, 2011 10:36 pm

As I was told at the begining of my colon cancer journey " The day you were diagnosed with cancer was the day you became a survivor".
Joel, 39, married 2 children.
6/9/11 First scope, DX cancer
6/10/11 Colon resection, raquetball size tumor
6/13/11 Pathology posotive in lymph
6/24/11 PET scan, port implanted, chest biopsy
6/27/11 Chest patho negative
6/29/11 First chemo FOLFOX4


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