katielinn
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Hi Joe,
I’m sure one of the more experienced members will chime in soon, but I just wanted to welcome you to this amazing site. Everyone on here is so helpful and has gone through this all before. How old is your mom? Which hospital are you going to? Due to the rarity of this cancer, finding a doctor that is knowledgeable and has experience with CC is key. It’s not easy, but try not to listen to timelines as many people on this site have long surpassed them! My mother (57 yrs old and otherwise very healthy) was diagnosed July 4th with Stage IV CC with >30 tumors on her liver. It’s extremely difficult, but we just try to take it one day at a time. Keep fighting!
~KatieHi Pam,
I just wanted to say how sorry I was to read about your daughter Lauren’s diagnosis. My mom was diagnosed in July of this year (she’s only 57) and it has been a roller coaster thus far. I too always think how I wish I could take her place..I think a lot of caregivers feel that way. It’s the worst thing ever to see a person you love more than anything in the world, be in pain
It sounds like she is a fighter though, so try to stay positive that she could be the one to beat this awful cancer!! I’ll keep you both in my thoughts and prayers.
~KatieHi sparklynne,
I just wanted to say how sorry I was to read your post and to let you know that I express some of your same frustrations daily. My mom (57 years old and otherwise healthy) has >30 tumors throughout her liver and our first doctor left abruptly without answering our Q’s because “it’s 3:00 and she was going on vacation”! I don’t even know why some people get into the healthcare industry!! Also, our insurance company has been AWFUL to deal with, and we just got notice yesterday that they rejected our appeal for treatment again, calling it “experimental”. It’s extremely frustrating!!The best things that I’ve learned from this site are to consult the doctors with the most experience with this rare cancer, don’t listen to timelines, and come here for support and knowledge of this awful cancer. Best of luck to you and your family.
~KatieThanks Gavin, Marion, and Lainy!!
Her pain is so minimal today that she didn’t even need to take any pain meds! I’m assuming the liver swelling has gone down, thank God. Now we just have to get her strength up so she can get another procedure on the 28th. Thanks again for the all the kind words and support.
~KatieThanks all! The pain is now under control with Oxycontin. We are finally home from the hospital and hoping that her swelling will go down so the pain goes away!
Hey Lainy–I would assume that they could see if that was the case on the chest and belly CT scans that they did? The doc came in this morning and thinks that it’s pain in her liver caused by the CC. So my poor mom is very discouraged because she is in major pain and cannot fathom putting up with this
Yes, I definitely can’t wait until I can talk to our docs at JH tomorrow!Thanks for your response
Well…we have been back in a hospital for 3 days now and we still don’t know what’s wrong. Mom’s pain is EXCRUCIATING and she is on dilauded and still feels the pain. They did a belly CT scan yesterday and we have yet to hear the results. Mom’s concerned that this could just be pain from the CC…is that possible??!
Also, her Calcium levels were high so they’ve been treating that as well. Is that normal? I just wish they could figure this out! And mom is terrified that she will be stuck in bed, in constant pain when we do finally go home.
I’m anxiously awaiting our docs at JH to return on Tues so I can get some answers.
~Katie
Her pain is located on her right side, at the bottom part of her ribcage. We had a CT of that area and they didn’t see anything. They suggested that it could be the liver pressing on something that is causing pain. She was sent home from the hospital on Dilaudid (spelling?) and in no pain, but it just came back
Hi Danny,
My mom has stage IV CC and recently had chemo embolization done at Johns Hopkins. We love the doctors there! The side effects have hit her hard (she’s very tired and weak), but we did just get MRI results and the treatment did work! She had tumor necrosis (death) and some shrank. I would definitely send them your mom’s scans and blood work and see what they say. We have to have another chemo embolization done in a few weeks (if she feels better by then), but the fact that the tumors responded to the treatment is giving me some hope. Let me know if you need any additional info.
~KatieHi Janet,
We go to Johns Hopkins for my mom as well (age 57, stage IV, numerous tumors on liver) and love them. My mom had chemo embolization by Dr. Geschwind and we find out next week how it worked. Which doctors are you working with? Dr. Pawlik? We met with Dr. Pawlik and Dr. Cosgrove on clinic day and loved them as well.And I know what you mean about the rest thing! My mom is constantly yelling at me for not letting her carry anything, etc. She has good and bad days, so her energy level really varies. Wishing you and your mom all the best!
~KatieThank you everyone!! She has been feeling better so that is a plus. We go for the MRI tues so hopefully it shows good results! They did a chest xray to see if there was a reason for the cough and we haven’t heard back yet (which is usually a good sign, fingers crossed).
Again, thank you so much for all of your input…it’s so nice having a resource of knowledgeable people to talk to
~KatieThanks Johanna and Bazel! I’m even more concerned now (at 3 weeks, 1 day) bc she feels like she has gone downhill in the past week. She has a consistent cough (she insists it’s just a tickle in her throat but its constant) and feels nauseous and couldn’t even make it 1/4 of the way around the block today, which she has been doing fine with. Her low grade fevers are gone, but she feels weaker and more exhausted this week than the past 2.
We go for her MRI and bloodwork on Tues, but I’m just really concerned that she feels that she’s getting worse.
Worried constantly,
KatieMD Anderson only offered chemo?! That’s surprising as that is supposed to be a great hospital. We go to Dr. Geschwind and his team and absolutely love them. I really like their approach at Hopkins…you go on a clinic day and talk to numerous members of their team, and each of them takes a lot of time explaining things, answering questions, and giving their treatment recommendation. Dr. Pawlik (surgeon) also said that my mom is not a surgical candidate (I believe it’s due to the metastasis to the other lobe) but they recommended we do this treatment before resorting to the GEM / CIS systemic chemo approach.
Let me know if you need any other info! So far, my mom had one round of Chemo Embolization and we go for an MRI in 2 weeks to see how it worked.
Hi Jillybean,
I completely understand what you’re going through as my mom who has always been extremely healthy, just got diagnosed at age 57. Her CC also has spread to both lobes of the liver. We are currently in the process of chemo embolization (strong chemo pushed directly onto the liver and tumor blood supply reduced) with Johns Hopkins Hospital. What hospital is your husband going to? Which “radical alternative methods” is he participating in?The best things that I learned from this site are to go to a doctor that sees this rare cancer often, do research and come up with a plan that best suites your family, and to get mulitple opinions and never lose hope! I’m sure the other, more knowledgeable members will chime in soon, but I just wanted to let you know that you are by no means alone in this fight. Hang in there.
~Katie
Jim–agreed! However, this insurance company is absolutely AWFUL to deal with. First it was fully covered, then 70%, THEN yesterday the director of Keystone Insurance REJECTED the chemo embolization procedure, calling it EXPERIMENTAL. We are furious! And came down to Hopkins anyway and are getting the treatment regardless.
It is just so horrible that people like my mom who already have to battle the cancer, have to worry about battling the insurance companies as well. Just Awful.
