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Hi Lorna, Thank you and your Father for sharing this remarkable story. It is obvious that you both are fighters and strong people with incredible determination to win over this nasty disease. My Hubby was diagnosed in July 2016 and was fortunate enough to be eligible for resection in August 2016. It was successful insofar as removing the tumor in the main bile duct, but the margins were not clean and there were some malignant lymph nodes. (By the way, his recovery from the surgery was extremely difficult.) Thus he is now doing gem/cigs chemo. His tolerance of the chemo has been really good so we feel very fortunate.
From your posting, I assume that you are the primary caregiver and I would love to hear how you are dealing with this responsibility. I find that it is a most challenging position to be in and it would be helpful (at least to me) to know if others are going through some of the same things that I am.
Here I send my best wishes to you and your Father for continued success in his therapy.
Julie, thanks for all your input. It certainly helps to get feedback from others with first hand information. Hubby had his second infusion last week and the “come down” appeared a little sooner. However, he had the Neulastra injection the day after and so had to take Claretin which I think can make you tired, too. With time, I think Hubby will adjust to this weary feeling because I don’t think it will go away until all chemo cycles end……if then. However, we both are thankful that is the only side effect so far from the chemo. I so sympathise with others who suffer more. Here’s the best news……..Hubby encouraged me to get a cleaning lady because he now realises how difficult it is to do work when you’re tired!
Gavin, You’ve been a great help and thank you for your quick response. When I think about it, I probably couldn’t understand the whole article even if I got it!!! I am just a nut, though, when it comes to probing into everything that I can find. I’m sure that I’m not the only one because I suspect we all (patients and care givers) keep hoping that we will stumble on the answer………….THE ANSWER!!
I am just so delighted with this website and I am so thankful for all of you moderators, as well. It is so reassuring and comforting to have access to other people’s ideas, opinions and stories. I can’t say “thank you” enough.
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Wow, what a story!! I have just spent time reading “your story” from your first post to this last one. I so admire your bravery and strength. You are an inspiration to all who are in the same boat as well as to care givers. Thank you so much for your honesty and encouragement that no one should ever give up but should always push forward.
Gavin, I find this abstract most interesting! However, being rather new to this site, I’m not exactly sure how I can read the full article. Would it be only by purchasing it?
Hi Julie, You struck such a sweet note in your postings because you care so deeply for your Dad and are searching so diligently for his proper care. By now you may have already decided to move somewhere and may also have found an Oncologist that you are happy with. However, if you have not done those two things, I just want to put in my two cents about my experience with my hubby’s situation. He is currently being treated at Banner MDA and we both are so very pleased with his care there. His Oncologist is Dr. Kundranda and he is just wonderful insofar as he actually has a grant to do research on bilary cancer, particularly cc. Not only is he tops in his profession but also he is extremely patient and informative. He listens!!! It is so important, also, for a man to be able to relate to a physician and often times that isn’t the case. However, Dr. Kundranka is such an understanding person to talk to and always, and I mean always, answers every question asked, whether it be by hubby or by me. Banner MDA is an incredible facility and I think you would be most impressed if you could just take a tour. Their Oncology Department treats each chemo patient so wonderfully and with such tenderness, too. Each patient has a very private cubicle, an assigned nurse and even lunch is catered!
Hi Lainy, We’re home after hubby’s second infusion yesterday. He has spent the last two hours today shopping at Home Depot so you can tell he’s full of energy once again!! You know how men love to browse in stores like that! The infusion went well just like the first time.
What say you we meet for coffee around 10:00 am in the Deli at MD Anderson’s Cancer Center on November 9? If this isn’t a good time or if it isn’t convenient, please just let me know and we can make other arrangements. Really looking forward to meeting you!
Super, Lainy!!! When I get home this afternoon, I’ll suggest a date or two to meet. I’m really looking forward to that a lot.
Marion’s, thanks for the support and suggestion. Hubby could have climbed Mt. Everest the day after his first infusion!! He started to “come down” around the fourth day. He’s okay with the differences now that he knows what to expect. I have a zillion things on his “honey do” list for tomorrow since he gets his second infusion today!!! (Just kidding, you know that!). Putting up with fatigue is totally tolerable compared with other more uncomfortable effects other suffer. For those I feel truly sympathetic. Let’s just hope the fatigue is the sum for him. Tomorrow he gets an injection of neutral (?) which he will not get on every ninth day. I haven’t read anything about that; i need to do some more research on that. I believe it is supposed to create white blood cells in the bone marrow????? Doctor told him to take Clariton day of injection and a few days after to try and ward off any bad effects.
Lainy, what a nice suggestion to meet! Next week is hubby’s week off but perhaps we can set something up the following week. I would love to get together with you. You have been through a lot and you have also witnessed so much through this wonderful website. It is very generous of you to offer your time. Let’s see how our schedules coincide, okay?
Lainy, I never did like roller coasters! However, that doesn’t mean that I can’t learn to, right? From all the postings that I’ve read, it’s very obvious that everyone’s seat on that ride provides a different experience. Personally, I think the front row would be the worse but then no one has a choice.
We live in Goodyear, AZ and so the trip into Gilbert is a long one but we both feel that it’s worth it due to the confidence that we have in my husband’s oncologist, Dr. Kundranda. Actually, he was our second opinion having first gone to Palo Verde Oncology. It was they that recommended seeking a second opinion. Since my husband’s infusion is over five hours long, we have arranged to have his blood test and office visit the afternoon before the infusion the following day. We stay overnight at the Hampton Inn which is only a few blocks away and it is very convenient. Starting the infusion very early the next day allows us to beat the traffic on the way home, too.
Tomorrow will be my husband’s second infusion and we both will go to the appointment much more relaxed since we now know what to expect. All of the nurses are extremely knowledgeable and attentive. The facility at MD Anderson is very calming and relaxing. It provides so much for not only the patient but also for the companion. There is a library of movies to watch, a lot of books and magazines to read, and even a patio with a view on which to sit. At 11:30 every day there is also lunch provided with a wide variety of choices, too. Pretty awesome, huh?!
My husband is now five days from his first chemo treatment and for the first time is feeling fatigue and that is not a normal feeling for this very, very active man. I told him that others on this board find that a common effect from chemo and if that’s all there is to tolerate, then that’s not all that bad. I must say, though, that the day of and the first three days after his first infusion he was so hyper and felt incredibly energetic. I wonder if that is normal. I rather think that it is. I’d appreciate other responses on that. In two days he will have his next infusion so we’ll see if the same pattern appears.
Thank you for your reply, Lainy! You immediately made me feel right at home and welcome here. We are from Phoenix, A Z. My husband is now being treated at MD Anderson Cancer Center here and we are extremely happy with his Oncologist and the care provided. I agree that worrying is of no benefit to anyone and that living with a positive and honest attitude is the best approach to all of life!
My husband is now five days from his first chemo treatment and for the first time is feeling fatigue and that is not a normal feeling for this very, very active man. I told him that others on this board find that a common effect from chemo and if that’s all there is to tolerate, then that’s not all that bad. I must say, though, that the day of and the first three days after his first infusion he was so hyper and felt incredibly energetic. I wonder if that is normal. I rather think that it is. I’d appreciate other responses on that. In two days he will have his next infusion so we’ll see if the same pattern appears.
