new to site, looking for support
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Lot of great advice here! I just wanted to say hello, and that your not alone. We are here for you! There is always hope! If I can help you on anyway please feel free to send me an email
Tiffanyschwantes@gmail.comHi Pat,
I understand if you or someone in your family has a bad experience somewhere, you might be reluctant to go there. I am very sorry to hear about your husband’s ordeal and the death of your dear nephew. I can only say that our experiences with U of M were all good and that they did everything in their power to help Lauren. It is very difficult losing a child. We think about her all the time and wish so much we could see her again. I hope that in time it gets easier because how we feel now is not easy to deal with. I do have people to lean on. My husband is a gem and I have two wonderful children and a son-in-law. I also have my Mom, Dad, and sister along with her family. My friends are great but I feel they would not want to be around a Debbie Downer, so I put on a happy face and pretend I am ok. I hope that you will find a place you are comfortable with and get great care. Best wishes.
Love and hugs,
-PamDear Pam, Thank you for taking the time to write to me. Truthfully, I can’t imagine losing a child. My deepest condolences. I am 62 and when I hear about someone so much younger dealing with serious health issues, I realize how fortunate I am to have lived a healthy life until recently. I hope you have someone to lean on. You asked me why I didn’t go to UofM. Well, I have been a patient of Henry Ford Hospital for many years. Also, my husband was at University of Michigan and unfortunately, his breathing tube came apart and, as you can imagine, he freaked out (like anyone would). I will tell you the details if you request. Also, my nephew Stephen died at University of Michigan due to kidney failure. Please let me know how you are doing. Sincerely, Pat
Daisey ! Was wondering how your mom was doing. My husband is the one with this awful cancer and we have also been to see Dr Chapman.Infact we just got home last night after having some final appt at Barnes to complete for the Dr to decide if maybe my dear husband might qualify for a liver transplant, either way Dr Chapman will let us know thru Valerie our contact person what they decide would be best for him. I have a good feeling about it. I hope and pray that he can get some help, this is the hardest thing I have ever been through. I feel helpless, there does not seem to be too many options. But I will keep going no matter what. I wish more was known about this cancer. I am so glad that I found this site it sure opened my eyes and has given me so much hope.
I hope your mom continues with a full recovery!After 5 doctors told my mom that she was inoperable we found Dr. Chapman in St. Louis. Please all of you reading this…SEND THEM YOUR INFO!! They are amazing at getting back to you…,you pay nothing to have them look at your records. It is worth a try he has worked miracles for my mom and look up (Jathy) her story is what inspired me to bring my mom there. She has been in St. Louis for a month where she had her liver resection.
Hi clawler and LadyLinden,
I would like to welcome you both to this site. I haven’t been on this site much for the last couple months. My daughter, Lauren, had CC and unfortunately passed away in June from complications after a liver resection. She was only 27 and had fought valiantly for 22 months.clawler- sounds like you are doing great and have a good attitude!!
LadyLinden- Lauren started out on Gem/Cis along with 5-FU. She would be tired and fell achy for a few days after her treatment, but seemed to handle it the best of all the different chemos she had and had a lot of shrinkage of tumors with it. She did lose her hair, but not sure which chemo caused it. I was curious as to why you didn’t go to U of M Hospital. They have a great cancer center, great oncologists, and great surgeons. If you want another opinion, I can give you their names. They have a lot of experience with CC.
I wish you both all the best.
Love and hugs,
-PamLady Linden – When you read the entire list of possible side effects, chemo sounds pretty awful but no one has all the listed side effects and some people have very few or none at all. My husband has been on chemo for almost a year and sometimes it has been difficult. However, we’ve spent time with friends and family, gone to concerts, taken walks and had a pretty good time together despite the obstacles. We know that chemo won’t cure my husband but we hope it will extend our time together and we haven’t given up hope that something more effective (perhaps immunotherapy) will be available soon. You are the only one who can make the decision about whether to try chemo but don’t let depression make the decision for you. Get all the facts, talk it over with those who are important to you, and then make the decision that is best for you.
Lady Lindon
i know that every person is diff, but my husband has been on 8 rounds now (2 weeks on and 1 off) since March of this year.
He has literally had NO side effects from it other than tiredness for a day or two or three afterwards. In fact he feels 1000X better than PRE chemo.
No hair loss, no mouth sores, no numbness and no cold sensitivity.
(perhaps he is really lucky?)He is 44 (not sure your age) and has Stage 4 as well with one main liver
tumor, a few lymphs involved and a few marks in lungs.Hope that helps. I know each persons reactions are diff–but know
that there are some folks to react QUITE well to this regimen of chemo.Dorien
Hi LadyLinden,
So sorry to hear that you’re dealing with this. It’s been only 6 months since my diagnosis, and I’m still figuring it all out.
My experience with chemo might not be the same as other people’s, but I can’t encourage you strongly enough to give it a try.
For me the choice was easy. I was diagnosed in March, and suddenly, before having a chance to start chemo, I got very sick–loss of appetite, fatigue, weight loss, nightly fevers, and occasional vomiting. The insertion of stents gave me immediate relief, but my doctor told me I only had “a few months” if I didn’t start chemo. I felt I had nothing to lose, and I expected the worst based on my prior knowledge of chemo from old movies.
In the five months of going through chemo, I have vomited only twice (one time after each of the first 2 treatments). I have had slight bouts of nausea for a day or two afterwards and some profound fatigue in the beginning, but I have not vomited a single time in 5 months. My fevers diminished after 2 weeks and have not returned. A CT scan after 3 months showed that all of my tumors and involved lymph nodes have shrunk. The primary mass in my liver was reduced by a third. I have been feeling well enough to travel, bike, walk, and spend lots of quality time with friends and family (though I am no longer working).
My weight gain (15 to 20 pounds-depending on the day) can be attributed to a number of reasons. At first I lost weight, so once my appetite returned I treated myself to whatever I wanted to eat to get back to my normal weight. Plus, before I got sick, I was used to being very active (working out and running) and my normal eating habits included many more calories than I can burn now that I’m less active. Furthermore, I’m doing a little bit of comfort eating as a consolation for having cancer–why not have dessert? and French fries? Pizza? Sure!
The doctor also said my weight could be affected by the steroids I get during chemo treatments. She has now recommended that since I’m not getting nauseous, she will eliminate the steroids.
I did not lose any hair, but I resolved that I wouldn’t care if I did. Maybe a guy can get away with that easier than a woman can?
After 4 months I had my first setback. The cisplatin did cause some hearing damage, so they stopped it immediately and replaced it with carboplatin which is much less toxic. The hearing loss is not a big deal. It’s more noticeable in a crowded restaurant than in a small room. I have that echo-like feeling you get the day after sitting near the speakers at a loud concert.
Overall, I am very happy with the results of the chemo. I never thought I’d feel as well as I do now.
If you’d like to contact me personally for more information, you can e-mail me directly at christopher.lawler@yahoo.com. I wish you well. It’s great that you have a local support group.I have Stage IV bile duct cancer. I had planned on seeing Dr. Catennaci at the University of Chicago for a clinical trial, but decided yesterday that I don’t want to be that far from home. Henry Ford Hospital, West Bloomfield, MI is calling to install my port for solutions of GEMCITABINE and CISPLATIN. I am afraid to start chemo. I am feeling fatigue but am still strong. I’m having enough sadness without adding additional emotional burdens. I really don’t think I am willing to go through the side effects of chemo. Losing my hearing, mouth sores, hair loss, weight gain…..I don’t believe I could handle it. I am joining a support group at Hurley Hospital in Michigan that meets on Thursdays. Question: Can you tell me the side effects you had with Cisplatin and Gemcitabine. Thank you and I sincerely wish you peace.
Hi Kris
Thanks for your wonderful posts and offer to meet up with “locals”. Whereas we are in NYC, sounds like you have so much experience, success and wonderful energy to share. I would gladly make the trip if you are willing to put something together. Please keep me posted!Clawler,
I will also chime in here. I receive my treatments at Fox Chase in Philadelphia., not far from U of P. I live in Willow Grove, about 1/2 hour or so from U of P.
There are a few of us from PA and NJ. I posted once before about having a get together somewhere in the middle, but the thread died.
My number is 267-625-9873. I don’t answer unknown phone numbers, tho, because too many of them are bill collectors (the joy of a cancer patient). But I will call you back.
Maybe we can finally do something, possibly next month? My suggestion would be meeting at a diner/restaurant for lunch where they have a separate room so we can talk without “disturbing” other people with our cancer talk.Clawler,
Welcome to our site and I am so very sorry that you had a reason to join us. Because of the rareness of this cancer many people feel alone and isolated with no one to really relate to. This is one of the reasons that this site and specifically this discussion board exists. You are not alone, you are one of us.
I am a 3 year 7 month 20 day survivor of extrahepatic CC (yes I count every single day!). I had a Whipple procedure which removes the ducts outside of the liver along with some other pesky organs. I had 6 months of adjuvant chemo but no radiation.
I got 4 ‘second’ opinions at different points in my disease from 4 different facilities (3 hospital and an independent oncologist). All suggested the same course of treatment which put my mind at ease that I was doing all I could do.
I wish you the best in your treatment and look forward to good updates from you as your treatment progresses.
Hugs,
-Randi-
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