July 26, 2015 at 8:58 pm #89081gavinModerator
Welcome to the site. Sorry that you had to find us but glad that you have joined and yes, you sure can spill your guts out here so please feel free to go ahead and do so as much as you want to. Sorry to hear everything that is going on with you and your daughter right now.
There is really not too much that I can add to what the others have said to you already, but I just wanted to stop by here and say hi to you. Do keep on coming back here as you are so around people here who know what you are going through and will help if they can. We are all here for you.
My best to you,
GavinJuly 26, 2015 at 2:51 pm #89080lainyMember
Dear Steph, I am very sorry about your Daughter’s problems and I know it can drain your strength physically and mentally! I know what you mean about other health problems as well as I am right behind you in age at a young 75! Another thing in common is that my Sister, when she was 16 was DX with scoliosis and went to Mayo in Minn. where they broke her back bones and reset them using shin bones. They put her in a body cast for 9 months. She is now 67 and has never had a problem with her back since. They always felt she got the S from when she had polio virus at the age of 2.
I am sure the Doctors will figure out something. The only advice I can offer is to try very hard to take it one day at a time. Feel free to let it all out here, that is what we are here for and I know you will hear from others soon but weekends are a little slow.
You never know how strong you are until “strong” is the only choice you have!
P.S. Please let all your Doctors know about the supplements you are on.July 26, 2015 at 8:59 am #89079
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.
StephJuly 26, 2015 at 8:30 am #89078iowagirlMember
Yes, you can be premedicated with a steroid before undergoing a CT with contrast if the contrast is suspected as a allergy agent for you. I did that for two separate CT scans (3 months apart) and each time I took one pill at bedtime the night before the test and then again in the morning before the test. They weren’t positively sure I’d had a reaction to the contrast initially, but did not want to take a chance. Something happened both times after the two scans even with the steroid, so I no longer have a CT with contrast. Instead, they do a CT of my lungs without contrast and an MRI with contrast (different contrast) of my abdomen and pelvis. I’ve had this two diffrerent times now and its been fine. It just takes longer for the MRI than a CT. I’ve got a lot of allergies too., some the same…some different than yours, .so I understand about how difficult it is.
Julie T.July 26, 2015 at 7:22 am #89077
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.
StephJuly 26, 2015 at 6:56 am #89076
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.
StephJuly 26, 2015 at 12:00 am #89075marionsModerator
suggi……already you are on the right tract by consulting with a center very familiar with this disease. At this point the suspicion of bile duct cancer must be confirmed, as some biliary strictures are not cancerous in nature.
Please keep us posted – we care.
MarionJuly 25, 2015 at 3:25 pm #89074lainyMember
Dear Stephany, welcome to our remarkable family and the best place to be for CC support. My husband was 73 when first DX and he in fact did have a Whipple. I know that it is very scary right now but when a treatment begins your fright will turn to fight. You do have good Hospital right in your area. One is Dana Farber and they had treated some of our members.
If you go to our search engine at the top of the page and type in Dana Farber many posts should appear on the subject.
You are so right to search out the best “Team” as many have still not heard of this CC.
Also my husband’s was in the same area, Distal, but did not enter the Pancreas . Below is a site you may find helpful and please do let us know how you are getting along as we truly care.July 25, 2015 at 6:48 am #11535
I am a newbie so do not know my way around the board as yet. Wondered if anyone knows if any hospital or doc is experienced enough in the MA area or not to far away.
I have been diagnosed with a precancerous or cancerous (not yet determined which) cyst in my bile duct and my GI doc is sending me tot Mass General. I also have numerous precancerous IPMN cysts on the head of my pancreas. I am only 108 lbs and 77 and have other health issues so do not think I am a candidate for a Whipple surgery. I have been trying to research this as my doc did not give me much info. From what I can see on the MRCP report, it is in my distal bile duct.
I am already a DCIS breast cancer survivor and to me that was nothing compared to this new diagnosis as I know all of them will become cancer and would like to prevent that if I could. However, when I asked my GI doc if this means an operation her response was “well, you are 77”. What kind of a response is that and then her office refused to give me a name for a 2nd opinion, saying I would have to find it myself and that I would have to get a referral from my PCP and not my GI doc.
I would appreciate any input you could give me as I am feeling a little helpless right now. I know most of you are in the midst of the cancer battle and I am praing for all of you. I am saddened by most of the posts and am hoping that things improve for you with treatment.
Thank you all for your help. I probably would not be able to go to MD Anderson, Mayo or John Hopkins but would like to know which of them is the best for this type issue and I guess kind of need to know if the Boston hospitals really are capable of taking care of this type.
- You must be logged in to reply to this topic.