So glad that I found you!
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Rena…the metal stent has a lesser chance of becoming infected than the plastic one. Hopefully this will also reduce his shaking episodes. Keeping my fingers crossed.
Hugs,
MarionWhat a whirlwind of a weekend! Dad does in fact have an infection brewing. Once at the ER they began antibiotics right away! He another Rigor’s episode today! Enough already!!! Poor dad is wiped out from 3 episodes of Rigors since Friday! His Dr now plans to remove his plastic stent and replace it with a metal wall stent 2 weeks earlier (next week). They are working on setting that up now and in the meantime the antibiotics can start doing their job!
Lainy thank you for pushing me!!! Really, I felt the urgency in your post! Thank you!
Last night as I was trying to fall asleep, I had a thought….CC patients once diagnosed should be sent home with a manual on this illness! There are so many situations that can occur at any given time. Thank goodness for this website and all of you!
Rena
Oh, Rena, thank God. I am so relieved. And you will be too. I was so afraid I was being too pushy, but, been there done that. Good girl, you did good. Yes, we will wait now to hear what they say. I really understand what your parents are going through as I was taking care of Teddy and my Dad passed at 93 and a month after Teddy my Mom passed at 94. How is that for longevity? I think they call your parents and me the “SANDWICH” generation as we take care of our parents and our kids. Looking forward to your update!
I did just mom & dad in going to the ER! Thank God! They are on their way now! Mom does have some support of relatives, friends & neighbors. They have been helpful and I am so glad that she is not there alone to deal with it all since I am 7 hours away and my brother is an hour and a half away. Up until ow, mom & dad were the caretakers of both of my grandma’s, so other family members have had to step up and help with them who are both in their 80’s.
I will keep you posted on the ER visit. Dad is supposed to get his plastic drain tubes out and replaced with a metal stent the first week of December.
Thanks for the push!!!
RenaRena….Has your Mom called the physician? If indeed it is an infection, antibiotics need to be started asap.
Hugs,
MarionRena, Dad should be going to ER, there is something going on be it an infection or something else. They need to do a blood culture which takes 4 -5 days, however the ONC will usually order a MED like Levaquin (what Teddy took) and get him started. Why allow this to keep happening to an already sick man? He is using all his strength and everything he has to fight this off each time and the more it happens is that much less strength he has to fight the CC. Does Mom have anyone near her who can help her? Family or friends. If he goes to ER and they find nothing wrong, hey great, but at least what ever it is can be stopped from getting more out of hand.
Dad had another shaking/rigors spell a little while ago that lasted 20 minutes ago. This time he felt it coming on. It was very scary again for both he and mom. Mom took all the advise that I gave her from your suggestions and managed him through it. She took his temp once the shaking calmed down and it was 101.9. She called me right away crying. I told her to wait 25-30 minutes and take it again. It then went down to 100.2 and 30 minutes later it went down to 100.1. Dad is exhausted now and does not want to go to the ER.
I’m wondering what you all think? I know from previous postings it is encouraged to go if the temp spikes over 100 *. Dads Dr says to go to ER if it spikes over 101* and because it dropped quickly below the 101* he wants to wait to see if it goes back up before going to the ER. He has also been clammy much of the day. They do plan to call his Dr. First thing in the morning to share everything and get advise.
Laura…glad to meet you and thank you for your encouraging words. I can hear your strength through your words! I wish you the best and please keep me posted with your chemo decision. How are your kids handling everything?
Darla & Lainy….you ladies are awesome! Thank you bunches for your encouragement as well. Mom and I appreciate the ambulance advice. All very helpful!
Rena
Hi Rena,
I’m so sorry to hear about your dad. I am new to this site but it is great to have found it! I was diagnosed in June with CC and was able to have a resection to remove the ducts, gallbladder and 60% of my liver. I have had those chills too a couple times. The best thing I have used every day since this has begun is my heating pad with an extension cord which I take every where. Both my husband and I are taking antidepressants that were prescribed while I was in the hospital. Chills with a fever need a trip to the doc asap. It is easy to get an infection in my experience.
I am from Ohio too, the Akron/Canton area. I am also still debating about chemo. I go for a 2nd opinion on the 26th. It is an individual decision, so whatever your parents decide is best for them. I’m glad to hear that he is trusting God on this. For me, I have complete peace, which I am sure comes from Him.
I hope your dad and all of you can enjoy your holidays and just take each day as it comes.
Best wishes,
LauraRena,
I understand exactly how your mom is feeling. It is scary, but dealing with everything that happens on a daily basis sometimes kept me too busy to even think about it. You are a wonderful daughter and I am sure that your parents appreciate all the help and support you are giving them. It isn’t easy on any of the family, but yes, all you can do is take things one day at a time. That has always been my motto. Take care and let us know how things are going.
Love & Hugs,
DarlaRena. Does Mom have anyone near her that can help if she needs it. If at any time Dad runs a fever of 100o or more when he gets the rigors he will need to go to ER. His ONC also needs to be told that the rigors and the nausea is happening as well. If Mom is prepared it may help her to be a little stronger. I used to put 3 blankets on Teddy then crawl on top. I always ended up having him go by ambulance as #1 the chills were outrageous and #2 he would get so weak from it that I couldn’t hold him up and #3 in ER here, you only get seen immediately if you come in by Ambulance .
I hope things stay calm now.It’s been challenging evening! Ironically dad had a really bad episode of rigors/shaking this evening. My mom called me and she was crying and saying that dad was shaking really bad and it had been going on for about 20 minutes. Somewhere in the middle he threw up. The blessing was that an hour before she called, I literally had just read all of your posts on this very subject (thank you). I was able to calm mom down and share with her what you all have shared with me. She immediately calmed down once she realized this can sometimes happen. Of course it scared my dad too. Mom warmed up blankets in the dryer and sat and held him until the shaking stopped. Thank you Marion’s for this idea! It really helped! I told mom to take his temperature once his shakes stopped and he did not have a fever. He didn’t feel we’ll yesterday at all and mom said that he was very quite all day. I hope nothing more is brewing!!!
Lainy..my husband and I both travel to the Milwaukee area often for our work. I love the areas along the lake!
Darla..you are really close!
Gavin…I agree with you in that I too told my dad that I will support him in
whatever decision he makes about the chemo. My mother over heard him tell his mother today that, “when God decides it is his time to go…he will not have control over it”. While that is hard to hear, it brings a certain peace at the same time even though I am still struggling with the whole concept that this awful disease may steal him from us.You guys really helped us with our scare today! I know that this is more than likely the beginning of this roller coaster ride…unfortunately!
Rena
Hi Rena,
One day at a time? Great way to look at things and I did that too with my dad and that helped us a lot! As to your dad and the chemo and his special diet, how does he feel about everything? I know you say your brother does not want your dad to do the chemo and would rather he stick with this diet, but I would say that as to diet or chemo/no chemo, my opinion is that it should be your dads decision to make. When my dad was diagnosed and he got his treatment options etc, I said to my dad that he should do whatever he wanted to do and that I would support him in whatever he decided to do. Just my 2p worth here.
Also just wanted to chime in on your dad saying that he gets cold a few times a week. When your dad gets that way, how long does he feel like that. Minutes, hours or what? My dad used to get bouts of chills and shaking that Marion has mentioned to you which is unlike what Lainy talks about. His chills used to come and go so it was not an infection that he had. It was weird and pretty frightening the first time that it happened to my dad. He would get cold and start shaking and this feeling would just come out of nowhere. Then it would stop just as quickly as it started. It happened every now and again and it was something that he got used to once he learned that it was quite common. Hope some of that is useful to you.
Hugs,
Gavin
Rena….As far as I know, Cholangiocarcinoma has three different staging systems: Bismuth, Blumgart, and the American Joint Committee on Cancer. However, for our patients it is of most importance whether the tumor(s) can be surgically removed however; if there is involvement of the portal vein or adjacent organs, lymph node(s) are positive, or metastatic disease is present then the likelihood of such resection is slim. Having said that, we have seen some surgeons operate whereas others may not; hence it is really important to consult with a surgeon “very familiar” with this cancer.
Cancer patients complain of being cold and I am wondering whether it has something to do with the loss of weight. Feeling cold most of the time differs from having chills with elevated temperature. This, as Lainy has mentioned, may be related to an infection and has to be reported to the physician.
We also have many reports of rigors. These are episodes in where suddenly the temperature spikes and is accompanied by chills (for a brief time only.) I would cover my husband with a down comforter and often time curl up to him until things disappeared again.
I hope this helped.
Hugs,
MarionRena, P.S. I keep forgetting to tell you that I used to live in Milwaukee. We were practically neighbors.
Rena, you are doing great, you are one step ahead all the time. I think Cancer can cause chills. If the chills are accompanied by high fever it could be a blood infection which requires a culture that takes 4 -5 days. Teddy would get them about 2 X a year and the ONC would put him on Levequin immediately. It is so hard for you not to be right there. Can the ONC talk to you? If so you might ask him if the chemo is going to prolong Dad’s life enough to be putting him through this? That might put your mind to rest about it. I don’t know about the stages but someone will. Don’t we have a brilliant Board? Sending you a big cyber hug and it’s warm! {}
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