malinger2
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Definitely a bump in the road. I’m sorry that everything seems to be an obstacle right now but keep fighting Julie….
Stella, I am so sorry for your loss and for the work that you are required to do after your husband’s passing. I can’t even imagine how you were both caregiver and business owner.
I want to thank you for taking the time to write out your thoughts on getting through each day with a terminal loved one. Each tip that you included is so valuable. Ones that you think would be just common sense, but are so necessary to review when going through so many different things. I know that I am making notes about many of your hints and pray that we will make it through this horrible diagnosis.
My heart and prayers go out to you, dear.
God Bless,
MelindaThanks Lainy and Gavin, You’re right. After I posted my question I saw that Rob was in the same boat. Hopefully, we will both have great news soon. I appreciate your prompt responses and will try to get in to see Dr. Singh at City of Hope sooner than the 25th. We are confident that we are in good hands with him and his team, but waiting is for the birds.
God Bless you both for the work you do here. I will keep you posted.
Good luck to Rob too.
MelindaI just posted a similar post regarding my husband’s three month ct scan. He has been receiving chemo since he also had clean margin and no lymph node involvement. “Something” showed up and now we wait for the surgeon to order more tests, most likely a MRI. I certainly know what you are doing through. My thoughts are with you and your family as you play the waiting game as we are.
MelindaPeggy, I’m so sorry to hear what your brother has gone through, as well as your whole family. This is a horrible disease. I will include you all in my prayers.
MelindaThanks all for your helpful comments. I think we will try not taking as much Zofran and see how he tolerates the nausea. We were just taking it, along with Marinol, several times each day, but maybe if we pull that back a bit, he will have more energy during the day. I hear you loud and clearly about hydrating. He used to drink tons of water and crystal light, now just doesn’t seem to be able to drink as much. Getting fluids from Boost, coffee, shakes and some water.
One thing that he has increased is his intake of ice cream and sugary snacks. He says they are the only thing that really taste good. I have heard that sugar “feeds” cancer cells. His surgeon said that having some is ok but that he should eat what ever he can tolerate.
We’re still learning, just finishing up round 1 out of 16.
Thanks for your info. It is much appreciated.
MelindaI agree wholeheartedly. I read reviews of doctors and hospitals and read about Dr. Fong from Sloane Kettering coming to City of Hope in Duarte Ca. Although Dr. Fong did not perform my husband’s resection, he was on the Tumor Bd that discussed the treatment plan. We were so lucky to get Dr. Singh to be our surgeon. There is no doubt that his skilled hands worked miracles on my husband, evidenced by the surgical notes that I just received today. Oh my, it was such a complicated surgery but Dr. Singh gave him the benefit of the doubt and performed it. He even repaired an umbilical hernia “since he was already in there”. LOL Even though the margins came back clear, Dr. Singh has ordered 6 months of gem/cis to attack with a “full court press” as he called it. We are so thankful for his team and the whole philosophy of City of Hope…they really do give you hope and every patient is a unique individual. God Bless them all…surgeons, nurses, lab technicians, volunteers, one and all.
We found Dr. Singh and City of Hope after reading many posts here. Thank you all for sharing your journeys.
MelindaI thought I would share with anyone that is interested that my husband tried the Canabis based, Marinol last night and it made all the difference for him in terms of increasing appetite. Since his liver resection on May 2, John has had little appetite and his taste buds were greatly affected, everything tasted salty. Maybe it was the placebo effect, but he took a pill last night before dinner, was feeling a bit loopy, or slightly high, but ate a great dinner, whistled on the way home, and was so much like his old self that, if for no other reason, the Marinol made him feel encouraged and like he could make it through the chemo that starts next Wednesday. We also got other drugs for nausea, but for now, the only thing we are worried about it building him up so that he will be stronger next week. One great dinner last night, one great breakfast today, a much better disposition.
I wanted to let people know in case they are worried about a serious lack of appetite or interested in Marinol.
MelindaHi all, Just got back from City of Hope where we found out that my husband will start chemo next Wednesday, for 6 months. He will be doing the gem/cis cocktail that many people talk about. They prescribed a few anti nausea drugs since he currently has no appetite. Everything tastes salty to him. He will only be on 25mg of the Cisplatin, and I hear that this is the drug that causes the side effects. I worry about him because he sleeps so much throughout the day, but the surgeon says that is normal as the liver is receiving all the nutrients in order to regenerate. Not that it matters, but does this chemo cocktail cause hair loss? I forgot to ask. They did do an audiological test today as they said that hearing loss is a side effect that they want to closely watch for. Getting the baseline today was great. City of Hope has been wonderful and are aggressive in fighting this horrible cancer. I’m going to go back now and search the boards for effects of chemo and what to expect. I know there are many threads. Just wasn’t sure before today so I never ventured into them.
I really feel that you all are a wonderful safety net and although I don’t know you and have only posted five times now, that you will be there to guide me through this journey and offer support and hope for as long as it takes.
Thank you so much for being here.
God Bless you all,
MelindaSnowbird, Dr. Fong came to City of Hope on April 1 but is unable to perform actual surgeries until his license is approved. He was, however, in on the discussion with the Tumor Board and also had a 1:1 with Dr. Singh who performed my husband’s surgery. Dr. Singh is currently the interim Chief of Surgery and Dr. Fong will take over shortly. We were very fortunate that COH and Dr. Singh got things done STAT and as he said yesterday, using a “full court press”.
Hello sdlinriverside. My husband was diagnosed at Riverside Medical Clinic and they immediately said that this was beyond their expertise so wanted to send him to UCI. We opted to go to City of Hope instead. He received the diagnosis on April 19 and he had surgery by the Chief of Surgery on May 2. City of Hope is incredible! Please look into going there if you can. Our doctor, Dr. Singh, is incredible and has the best bedside manner ever. Plus, Dr. Fong, from Sloane Kettering just came on board at COH. Every Thursday, a panel of 40 surgeons meet to discuss their cases. It’s like 40 second opinions. With my husband, his CA19-9 was normal, he had no symptoms and this was caught incidentally. Large tumor and satellite tumor were removed on the 2nd, leaving 45% of his liver. Recuperation has been ok, but he doesn’t drink enough water and had a couple bouts with dehydration, due to his insistence in walking at the Relay for Life, 15 days post surgery. What I’m trying to say is, although he had a quadruple bypass in the past, has two stents, diabetes and a stroke 1.5 years ago, they still decided to perform the resection surgery. They are aggressive in their treatment, and hopeful and positive in their outlook.
I wish you the best in this new life journey. Please don’t settle for doctors who do not have the expertise to treat this very rare and complicated disease.
Melinda
