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something's going on- in distress

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

For the past two weeks I have been feeling terrible. I was ready to go to ER yesterday morning, but I finally got through to my oncology nurse and an urgent referral was put in for a colonoscopy with ultrasound & I had a period of the day where my symptoms went away for a short while. Then my oncologist (who had been out of town on vacation during this time, naturally) finally replied to me by email (I had spoken to the nurse a few times over the past week and a half (which was when I first contacted them about not feeling well) & she was helpful, but not really that much.
By not feeling well I mean that upon waking each morning, I am nauseated and have to instantly run to the bathroom for an explosive bowel movement. Some days it's been diarrhea and other days it's been more solid. Literally, after two or three bites of food, I am racing to the bathroom and barely making it in time. I then feel nauseated, break out in a cold sweat, and then the pain starts. I do have a recurrent rectal tumor 3 cm above the anal sphincter. We have known about this for over a year now, but have not done anything about it because my oncologist does not want to risk more cancer spread by having me go off chemo for the needed time for any procedure or surgery. Even after my insistence and the onc nurse putting in an urgent referral to my HMO for me for an colonoscopy with ultrasound, my onc replies to the email I wrote him a week and a half ago on a Sunday night (before I found out the next day he was on vacation) and he says "It's timely that your upcoming PET/CT is scheduled- this will give us a lot of information. If it's a fistula or an abscess, then that area in the rectum will light up brightly." Well, that's all good and nice, but he ignored the fact that I asked him that I could be examined or given a colonoscopy w/ ultrasound asap and my PET/CT scan is scheduled for July 18th- a month away! His reply to my requesting a colonoscopy or sigmoidoscopy right away was that I need to wait until I've been off the Avastin for 6 wks. Well, tomorrow makes three weeks since I've last had any Avastin. If this were considered an emergency in ER, they'd do it right away without being off Avastin at all, I'd assume, so what does it matter if I've only been off the dang Avastin for 3 weeks?! I need help now- I can't eat more than a few bites a day and spend at least 3 to 4 hours a day writing in rectal pain- burning from raw skin and a throbbing, pulsating pain which radiates out up to my tail bone, to my whole vaginal/pelvic area, and severely out through the left buttock (my tumor is on the left side, so I'm assuming that's why the left buttock hurts). Even after all my description and pleading, he still doesn't seem to realize that I need something done now- today. If I go through another day of being passed off, I will be showing up down at Thornton Hospital (UCSD/Moores Cancer Center)'s ER, where I will insist upon being taken care of.
I'm going to call the PET/CT scan scheduling center in the a.m. and see if I can move my scan date up to this week, since my onc seems to put a lot of stock in that for diagnosis. I'll let you know what happens-

Lisa

dorookie
Posts: 1736
Joined: Jul 2007

I am so sorry to hear how horrible you are feeling, I am very surprised at your ONC though, I would think he would at least get you in to his office to see what was going on, do you think your PC might be able to offer some help. What you are describing does not sound normal to me. Even if its like a flu or something, someone should be seeing you.

Sure hope this gets resolved soon, feel better!! keeping you in my prayers...

HUGS
Beth

dmdwins
Posts: 453
Joined: Aug 2008

Dear Lisa,

I am sorry you are feeling so lousy. I just sent up a prayer asking that you can be seen asap in order to find out why you are feeling so terrible. Honestly, if you dont hear something soon I would head over to the ER.....sometimes thats what it takes for people to really listen to you to get the emergency care that you need.

Always in my prayers,
Dawn

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i am sorry this has to be happening.sometimes i dont know what is wrong with these doctors.when we see them them face to face they seem very compassionate.but then as time goes on it seem they pass us off to some one else or just tell us to wait.prayers to you my friend....Godbless....johnnybegood

relaxoutdoors08
Posts: 520
Joined: May 2011

Lisa,
Prayers for an early scan and something simple to treat. Keep us posted and we will do the prayers for you.
NB

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Left you a message on facebook as well, I will do so here.
Please, please go to the ER even if it's just for pain management.
I know what you said yesterday about what worries you going to the ER, but you need to get medication at least for the pain. Not afraid to say this, but you are a Christian as am I, and I've been praying for you as does everyone. And in my heart I honestly believe you should go to the ER. If I lived near you I would have taken you myself. Please don't make me sykpe or call you!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I wish I could do more than that, is there anything I CAN help with? Yelling at healthcare personnel is one of my best talents..."You want Aunt Guido rough 'em up, lady?" Seriously, if you can think of a way I can help, I'll be there!!!

I am not a doctor, but I will say that when I had my rectal tumor, I had to bathroom ALOT, just like you describe. I always thought that it was my body thinking there was something to eliminate (the tumor), so it kept in 'evacuation mode'. And MAJOR pain...even with Vicodin on board. Sigh, I don't understand your onc, though...doesn't he have someone standing in for him? Can you get a script for some major drugs? Like Hydrocondone? I know you don't like to take them...but this is desperate time, and if you were hospitalized, they would be dripping Morphine....

Please let me know how I can help!!!

Hugs, Kathi

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

dear lisa,

while in so much pain i wish i could help.its possible to tough it out for a short time,
but youneed excellent care now,i pray you get it.

hugsand love,
pete

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

Do you not have a surgeon that you could call. For this type of situation, I'd think I'd be calling my colorectal surgeon rather than my oncologist. I'm still seeing my surgeon, now on a yearly basis, but he is the one that does the colonoscopy and sigmoids. You need to get something done soon and if need be, like you said, go to ER. There is no way you should wait until the 18th and then an appointment to be seen by the oncologist to get results and then for him to decide what to do next. That could be into August by then. You do what you need to do to get you feeling better soon. Sometimes, doctors lose sight of the patient's own feelings. Good luck sweetie. Let us know.

Kim

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Kim,

I put a call into the surgeon 8 DAYS AGO. Her adm asst has called me back 3 times & again yesterday to apologize for surgeon still not calling me back. Yes, I relayed the urgency & she said surgeon wants to talk to me first before scheduling any appt to examine me- but then she never calls back! Even with the assistant's call and apology about the surgeon still not calling me, she said she'd "send the message again" and that I should hear from her by the end of the day. That was yesterday. Still nada. I am so ticked off that I've been completely ignored. I think I'll be asking for a different surgeon, should I need surgery. There is a new surgeon there who operated on my friend and she loves him- he recently came to UCSD from Sloan Kettering- his name is Dr. Sicklick- funny name.
I am outraged at how I've been ignored. Maybe my voice doesn't sound urgent enough when I've called- I sure thought it did- I was teary eyed and had a warbly voice from starting to cry- but again, that was just to the assistant- I've not ever actually been able to speak to my onc or to the surgeon yet. It's 7 a.m. now and I'm going to call the PET/CT scan place at 7:30 (I think that's when they open) to see if there's any way I can change my July 18 appt to today or tomorrow at the latest. Maybe if I just go to ER, they'd scan me there. I think if there's not a way they can squeeze me in today, then I'm going to go to the ER.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Lisa I would go to the ER, hopefully they will set you up for a scan ASAP. Take care Leena

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Go to the ER..... They have put this off too long....your body is telling you that. Screw all these people that want you to wait.... Please..Please go now... This IS an emergency at this point. I am very worried about you!

Jennie

relaxoutdoors08
Posts: 520
Joined: May 2011

Lisa,

Go to the ER. 2 weeks ago I slipped in the shower - my foot went numb and I fell. Hit my head and had a huge contusion size of a grapefruit bleeding at the back of the head. Had a ct scan of head and neck and the Radiologist was in the area reading the days scans so I lucked out brain and neck OK. It has been two weeks and the worst is sore neck and contusion now size of a walnut.

Hope get that ct scan like I did.

Praying for a early scan and need for a simple treatment.
NB

smokeyjoe
Posts: 1428
Joined: Feb 2011

Lisa above you mentioned that your doc. wants to see if it's a fistula or abscess....makes me wonder if he thinks maybe there is an abscess, maybe an abscess that could now be infected and causing these symptoms??

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Go to the ER. Sometimes timing is everything!

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BettyJoM's picture
BettyJoM
Posts: 86
Joined: May 2011

This is terrible. I think you should go to the ER. If I were in your situation I would certainly go. and call the colorectal surgeon. sorry, your onc sounds like an ***
wish I could help you
Betty Jo

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thank you for all your kind scoldings to go to ER- I am doing so. Will be leaving within the hour, but it will take some time to get there. I communicate w/ a few csn board members by phone, so I will let one of them know & have them update you, if I end up being admitted and can't report back in here.
I will be okay- appreciate your prayers- hugs to you all- what would I do without this board?!

Lisa

janie1
Posts: 753
Joined: Apr 2011

Lisa, you're probably on your way to ER - GOOD GIRL! If you have any down time (waiting), can you start some dialogue with Dr. Sicklick's office....get the ball rolling. I would not hesitate. You have a good reference from your friend about him (also, could she help get you in to see him more quickly). References mean everything. I, too, will be praying everyday for you.

GaryinUK
Posts: 63
Joined: Feb 2011

Lisa

Give them hell, do not be fobbed off, make sure the hospital do what you want and you get answers you need.

Hope things get sorted and the pain eases soon

Gary

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I'm very sorry to hear of all of your troubles. I have gone through some of the bowel issues you describe and it's not fun at all. Just a comment with the Avastin that I'm sure you're aware of, IF surgery is needed for anything, they like to wait 6 weeks since Avastin has blood thinning effects.
I do wonder if it's time to shop around for someone new. No one should be treated as you've been treated. Hopefully the Doc from SK will be better. ALL of the people I've dealt with there have been top-notch, very professional, and considerate.
Be well...
-phil

wolfen's picture
wolfen
Posts: 1321
Joined: Apr 2009

Your current "team" is not treating you with respect or in your best interest. They have forgotten the part about "no harm to the patient". Hope you are successful in finding a new team that will remember these things.

Waiting for your update.

Luv,

Wolfen

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

I'm glad to see that you are going to ER. After rereading your post three times, I'm glad you decided to go there instead of waiting for your doctor's to take your situation seriously. Can't believe you called the surgeon 8 days ago and they still haven't gotten back to you. I'm fortunate that mine aren't like that. Once you get this taken care of my dear girl, you need to find you a new set of doctors, or start the ball rolling with the friends doctor, like others have said. I'm am praying for you at this moment and will continue. Please keep us posted directly or through the board members.

Hugs! Kim

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Oh girl...so sorry you are in so much pain...so glad you're going to the ER...and agree that waiting for your doctors to do something has been awful. I agree new ones are worth looking at. Holding you in my heart; hoping you get some relief and answers.

love, Leslie

sasjourney
Posts: 395
Joined: Jul 2010

Hi Lisa,

Please let us know how you are doing when you get a chance. Remember, I can be there in an hour. You are in my prayers.

Hugs,
Sara

pscott1
Posts: 207
Joined: Jan 2011

Lisa, I'm so sorry you're going through this. I would get to whoever I could to speed up getting relief. Please keep us updated on your progress. You'll be in my prayers!

Hugs,

Pam

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Sweet Lisa-

Sending up prayers for reslotion on your pain and perhaps a swift kick in the AZZ of the doctors who were so dismissive.
You are more than past your hour of need in terms of getting a serious look at the issue.

((HUGS)) to you Lisa

Peggy

MrsJP
Posts: 157
Joined: Jan 2011

It sounds like maybe you need a second look. Have you told your naturopath? I can only imagine the pain your in, I feel so helpless in giving advise. Only you no what you can stand. I think a trip to the ER would be a good thing. A second set of eyes and maybe some pain meds. You are in my prayers.
Love,
Jeanette

mom_2_3
Posts: 964
Joined: Nov 2008

Lisa,

I am praying that you are getting some pain relief right now!!!

Amy

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Just got a text from Lisa.

She is fine, she says that she got her CT scan done, is on pain meds, and may be going home tonight. Her colonoscopy is in a couple days. She reassures us that she will be okay.

Glad to hear! Please send her positive vibes, prayers and cyber hugs!

Raquel

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

Thank you Raquel, so glad to hear that Lisa got scanned and will be okay :)

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Lisa. your drs. treatment of you is unacceptable. You need to go to the er. You also need to call patient advocacy if the hosp. has one. My dr wouldn't call me, the PA would not return my calls so I called Patient advocacy. The PA returned my call within 5 minutes.
Explain to the advocate what the problem is. You will get what you need.
Good Luck to you, and many prayers of course.Judy

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luvmum
Posts: 457
Joined: Dec 2010

I'm so sorry to hear that you are in pain and the medical team is not helping you that much. I'm glad to hear from Raquel that you made the move and went to ER. Most importantly you are feeling OK.

I will pray to God to heal you and for a positive PET/CT scan.

Even though I do not come to the board very often recently, you are in my prayer and I think of you often.
Take very good care,
Dora (hugs)

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

I hate to see that you have been in such distrss for the last two weeks:( Glad you went to the ER and are feeling better. Keep us posted and I will pray for you :) Melissa

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Thanks Raquel.

Lisa,
You're in my prayers my friend.

Aloha,
Kathleen

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I'm so sorry you are such distress. Hopefully the trip to the ER can get things figured out. If they need to keep you then don't fight them, just do whatever is necessary.

Hugs - Tina

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I have been sooooo worried. I am so glad things are stable.

Lisa...... I will be sending good vibes ..prayers...whatever I can to help get you thru this as easily and quickly as possible

Love to you Girl!

Jennie

smokeyjoe
Posts: 1428
Joined: Feb 2011

Thanks Raquel...keep us posted, thinking of you Lisa. Leena

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

Thanks for the update. Glad she is going to be ok.

Kim

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

My personal experience has been better with the surgeons, I still haven't found the "magic" oncologist that could or would help outside their narrow confines. This doesn't mean that all surgeons are agreeable all the time. My wife and I spent substantial effort finding highly rated surgeons to go beyond common practices of doing nothing.

Two thoughts on chemo and surgery
1. Chemo (without Avastin) before and after surgery. Commonly the surgeons want 3 weeks fallow before surgery, 2 weeks after for more chemo. In asia there have been a series of papers where ordinary patients got another oral 5FU immunochemotherapy, up to within 3-4 hours of surgery, and did fine. Other asian papers show immunochemo through surgery or starting the day after. Immunochemo is low dose 5FU, IV or oral, cimetidine and PSK.

We've deep into tissue and wound healing nutrients like, glutamine, IV vitamin C, glucosamine, vitamin K2 along with minerals. My wife sped out of the hospital after 2nd surgery, despite a large gash, on chemo.

Achieving satisfactory post-op wound healing may be more problematic with US style heavy chemo.

2. Not all "chemo" has to conflict with clotting.
Our surgeon requested an INR value approaching 1 and a test for thromboplasmin before surgery. My wife's INR was 1.0, possibly 1.00 at surgery. We used vitamin K2 perioperatively for both surgeries at 45 mg and ca 85 mg per day respectively, and 7-15 days off blood thinners like vitamin E, aspirin and fish oil.
-----------------------------------------------

Chemo, Plan B
A recent set of cytotoxicity tests, on viable tumor cells from congolmerated treated para-aortic lymph nodes, show that my wife is relatively resistant to fluorouracil, oxaliplatin, irinotecan and gemcitabine singlely and in all but one combination: GEM+OXI+5FU was listed as moderately effective. I was able to arrange some additional tests run with several uncommon adjuvants, including menaquinone, aka vitamin K3, and menaquinone-4, aka a version of vitamin K2 abbreviated as MK4. The MK4 form of vitamin K2 is used as a supplement for osteoporosis at 45 mg (45,000 mcg). MK4-K2 has been used in some places for liver cancer, also an adenocarcinoma, typically at 45 mg per day orally up to 90-135 mg, limited by nausea.

A combination 5FU, vitamin C, and MK4/vitamin K2 was reported as the most successful test series of all for my wife's tumor cells from the second surgery. A surprise for all.

My wife has taken a low dose oral fluorouracil prodrug containing an extra adjuvant metabolite, along with cimetidine, high doses of lipoic acid, coQ10 and IV vitamin C for over a year. She even took this chemo up to 24 hours before 2nd surgery and 24 hours after 2nd surgery, per some foreign studies across two decades. She took osteoporosis treatment levels of MK-4 once on and once off last year, now on permanently. After a chemo reduction or break last year before leucovorin was available, dx misreported as "stage III", these treatments did not stop the growth of the long enlarged para aortic cluster during the last several months before the second surgery. However, the second set of surgeons were amazed that she had previously necrosed the mesenteric invasion prior to first surgery, and silently carried a enlarged malignant para-aortic node cluster, misreported as missing or negative, for over a year after diagnosis without general metastasis.

Although we have no further information on combinations of chemo like GEM+5FU, GOLFIG or FOLFOX with MK4/K2-lipoic-coQ10, along with the host of other nutrients, we could be forced to choose heavier combinations in the future if or when the micromets finally emerge. The big question may be MK4/K2, coQ10, lipoic acid, etc as adjuvants to which heavy chemo combination.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Lisa is still in the hospital, but she is fine. They are running tests and hopes to be able to update everyone tomorrow. Tonight is her son's graduation from HS and she is not sure if she will be able to make it.

Please keep her in your thoughts today. For those that pray, group prayer is powerful!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Raquel,
Thanks for the update. I hope and pray she made it to the graduation. I also hope they are helping with the pain.

Lisa,
As always you are in my prayers.

Aloha,
Kathleen

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hey Everyone,

I'm home from the hospital! Will get to see my son's graduation tomorrow (Friday) night- so glad about that. I posted another thread with my update on what happened in the hospital, so I won't write it all out again here. Just wanted to say thank you to all of you who showed concern for me and thank you for well wishes and prayers. You are all so wonderful- this site really is like a family. :)

Hugs,
Lisa

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