suggi

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  • in reply to: MRCP doctor refusal #90740
    suggi
    Member

    Marions

    Thank you so much for the info. Kind of confusing as I wonder how that affects my prognosis. I certainly did not get any help from the “expert” regarding this. Hopefully this other doctor at Brighamns can shed some light on it. Eventualy it will become cancerous and spread and since I am not a candidtate for surgery I presume there is not much hope. I have read that chemo is not really effective on bile duct cancer so if it has been in there since birth and no one knows when it reached the size it is then no one could predict how long before it turns. Now would be the time to take it out — oh, why couldn’t I be 50 lbs more in weight???? That would probably save my life if I was. However, the most I ever weighed was 125 and that is when I was 9 months pregnant.

    in reply to: MRCP doctor refusal #90738
    suggi
    Member

    Marions
    Sorry I had the name wrong – it is a Type Ic choledochocal cyst that they insist is precancerous and not a cholaductal cyst like I thought. So I guess that makes it worse.

    I am going to try to see someone else and if I don’t feel right about it I may have to go out of state although I cn not afford that but at least to get another opinion.

    I heard Dr. John Cameron is the best but he is 79 years old and will probably be retiring by the time I get around to trying to get in to see him or perhaps he would even be willing to look at my scan.

    Do you know anything about Type Ic choledochocal cysts?

    in reply to: MRCP doctor refusal #90735
    suggi
    Member

    PS
    Lainy
    Did your husband lose much weight? I have read the average weight loss from a Whipple is about 40 or more lbs and that would make me 64 lbs and I doubt I could survive that as I understand there are eating problems also and perhaps more weight loss. Much, much scarey.

    in reply to: MRCP doctor refusal #90734
    suggi
    Member

    I was told that the cyst is precancerous and not benign — do you think a 1c choloductal cyst is benigh maybe??

    I was sent to Mass General to the “expert” who went over the scans and determined that. I was supposed to have the MRCP at my local hospital as he said it is better to keep the same machine. He seemed very unprepared for my visit as he had not even looked at my scans before I was there so I was unable to ask the questions I wanted. He said he was going to have his radiologist look at the scans and according to what he wrote my GI doctor (old one retired and I am not happy with her either) she said it is definitely precancerous and the expert at Mass General talked to her and the radiologist agreed that one year is the “protocal” for this.

    Is 6 monts too much gadolium or something? I am allergic to the CTscan IV contrast and had a severe abdominal issue with the Gastrografin oral contrast for lower abdominal pain so I guess I could have the diluted barium but now I just was back in the ER with bad lower abdominal pain again and was afraid to have the Gastrografin after what it did to me last year so they did the scan without the contrast and of course it did not show much of anything but they put me on Cipro in case it was an infection like last year. However, the Gastrografin gave me such extreme severe pain in my whole colon for 36 hours before it started to subside. I could not even touch my belly to soap up to get washed and the shower hitting my belly hurt – believe it or not. I have never encountered anything like that in my life. They were late with the CTscan and it was well over 2 hours after I finished drinking it so maybe all the inflammation they found last year was mainly due to the contrast and not the infection. However, the Cipro did clear it up last year but I have just started my 5th day of Cipro out of a 7 day regimen and I do not see any improvement so I am very discouraged at this point. It is in my sigmoid colon right in the midlle of the belly around where it meets the rectum. I guess I would not be able to have the barium now anyway as they would not give me that in case there was a perforation. However, this had nothing to do with the doctors decision to pull the plug on the MRCP as I did not have the pain when the appointment for it was made.

    I think the stress is getting to me. I have those darn IPMN pancreatic cysts too. Will the worry ever end>

    in reply to: Not a candidate for surgery #89712
    suggi
    Member

    Middlesister1
    Thank you so much for the information. I will keep it. Am hoping when the doctor emails me he will explain everything further so I know exactly what is going on. I have many quyestions but because he had just seen the CDs himself he did not want to offer much information.

    Sigh, I know he could not offer more info at the time but the suspense is horrible if you know what I mean. The only thing he was clear on was that there was no surgery for me.

    Thanks again. It is so nice to have somewhere to go where it is almost like an extended family — you all understand and here I can vent where I do not feel I can to my friends and family. Hubby understands but I can not keep telling him about the knot in my stomach.

    Thank you again so very much.

    Steph

    in reply to: Not a candidate for surgery #89710
    suggi
    Member

    Middlesister and Lainey thatnks for respondin

    Middlesister could you tell me what your Mom was on that put her in remission. I would really like to know.

    There is absolutely no hope for surgery at any point – I presume it is mostly about my weight as you lose quite a bit from a Whipple and that is the only one that would work on the common bile duct. Actually, the doctor was very vague, he just said there are medications – maybe to not frighten me until he reviews everything. He said he communicates via email and is having his radiologist look at the DVDs we brought to confirm his findings. I am not even positive it is out of the precancerous state and now cancerous. I got the impression that it could block the bile duct at any moment? so I guess the size is a problem. He kept asking me about pain and so far I do not have any right sided pain but he indicated if I do get any to go right in..

    After I hear from him I will try to get a 2nd opinion. Guess the next question for the board is are there any good doctors in the MA area or a little further.

    Just for my infor though I really would like to know what your Mom was on. Even if it really was a miracle and not the meds that put her in remission I would like to just bring the name of the med up when speaking to the doctor. It may not work in every case so I could be the one it does not work on but at least I had a voice in my care.

    Thanks again and anxiously awaiting that med name.

    in reply to: Mass general #89100
    suggi
    Member

    Daisy – I am just starting this journey and have an appointment at Mass General in Sept. Did your Mom have any surgery before her remission or just chemo? Where did she go for treatment and did Gem/cis put her in remission.

    I beat breast cancer but this one is really a scarey one. I am praying for your Mom and please post any info you can so I kind of get a feel for what is down the road for me.

    Thank you.

    suggi
    Member

    Thanks Julie

    I appreciate the reply. Just wonder if the CT scan could see any more than the MRCP/MRI with my scoliosis. That info is bothering me a bit as if a problem can not be seen what options do I have. I wonder if anyone else here has a problem like that. I am sure I am not the only one with scoliosis but mine apparently is S shaped so don’t know if that makes a difference.

    I saw some of your other posts and hope you are doing well. You have been through a lot. Should I be expecting blood clots at some point? I am taking Evista for osteoporosis and that has a few black box warnings that it can cause blood clots so I take 1000 IU of omega 3 fish oil daily as it is a mild blood thinner plus at the moment I am using Vitamin E oil on a rectal fissure because I am out of options there and apparently that also is a mild blood thinner. (Actually my PCP said to be careful to try to stay within the safe upper limits with Vit E or you could get a brain or abdominal bleed…..Well, kind of no way to determine how much is in each drop from the bottle and you need enough drops to be of any use)

    Did any of your docs mention Omega 3 or Vit E or did they put you on Coumidin? I am not really familiar with Coumedin except to know it is a scary drug and hopefully you do not have to be on it forever.

    Please write back and let me know how you are doing. Hugs to you.

    Steph

    suggi
    Member

    Lainy and marions –

    Sorry I forgot to ask – because of my S shaped scoliosis of the spine the MRCP report states it limits true axial imaging and mentions limited evaluation of the liver, gallbladder, spleen, adrenals and left kidney. Is there any other way of “seeing” these organs…….ultrasound??? I have a lot of drug allergies i.e. IVP dye, nuclear medicine contrast, rubber in tip and bends of scopes (latex and non latex–actually a carba mix allergy), most antibiotics, etc. Perhaps being premedicated with Prednisone as a prophylactic I could have some other tests done.

    Thank you for any info.

    Steph

    suggi
    Member

    Thank you Lainy and marions. You make me feel welcome here….a place where I can “spill my guts”. My daughter is going through a hard time of her own (plus a very difficult menopause) and I am trying not to say too much to her as I don’t want her spiraling downward. At least here I can talk it out and get some good advice at the same time which I appreciate.

    My diagnosis that the GI doctor gave me for the bile duct was precancerous or cancerous cyst because it is type I. I got a copy of the MRCP report done for the pancreas IPMN cysts that she said were always precancerous and under Impression: it said “Small type Ic choledochocele” plus the numerous IPMN cysts within the pancreas head, gallbadder sludge and right upper pole renal cyst.

    I did not understand the findings in the body of the report so just have to wait until I see Dr. Brugge at MGH.

    I have spent the last year and a half trying to keep daughter’s head above water with emotional and physical support and I am sure not getting enough sleep has not helped me as since last fall I seemed to get one thing after another — you probably know the feeling – getting to the point where you actually go to bed thinking today’s new physical problem was the last one for a while, but that has not been the case for almost a year.

    However, as I previously mentioned reading some of the posts have really gotten to me and I am praying for all of you. Please keep fighting. and hugs to all.

    Steph

Viewing 10 posts - 1 through 10 (of 10 total)