January 21, 2020 at 6:57 pm #99598debnorcalModerator
I am so very sorry for your loss. I will keep your family in my thoughts/prayers. I can’t imaging how painful this must be for you. I hope that, in time, the joy of raising your young child will ease some of your sadness.
DebbieJanuary 21, 2020 at 7:01 am #99592
I am so sorry to learn this sad news about your beloved husband. Please accept my condolences and prayers.
His desire to join a clinical trial to help others is inspiring. Your dedication to posting his story has also helped others following similar journeys with this cancer.
I hope your family and friends bring support and comfort for you and your child over the next days and weeks. I hope you will stay in touch.
Take care, regards, MaryJanuary 21, 2020 at 2:24 am #99591
I don’t post here for 2 months. A lot happened since then…
Firstly, “Candy”, I am sorry to hear about both your husbands. I really hope that your husband now is better and that new treatments will help him…
My husband started the FOLFOX, his morphine dosage was increased and other painkillers as well. Unlikely the prediction of the oncologist, my husband was here during Christmas and New Year. In December he had signed some papers to join a clinical trial that is about to open real soon. On the same day the professor and his group decided on doing this research they saw my husband. He was the first candidate.
That filled us with hope at that moment, but unfortunately this terrible disease didn’t stop, and that plus the side effects of the morphine transformed my husband into someone else. We would like so much to have been able to join that trial, if not to help my husband, to help other patients in the future.
My husband passed away last Saturday. That is the worst pain I had ever felt in my life, especially having a 2.5 years old kid that since he was 9 months old had his routine changed drastically because of this disease and now he doesn’t want to eat.
It was a battle that started on late March 2018 and ended in January 2020. As he had the “fast form” of the disease, I am extremely grateful for being able to have him by our side for so long, and I love him more than ever for having fought like that for us.December 12, 2019 at 1:09 pm #99424CandyParticipant
Hi Jules that breaks my heart for you and your family. Cc is such a terrible monster. My husband is dealing with it also..found out two days before our first wedding anniversary; this was five years after losing my late husband to leukemia. So I know how all of you feel… loss is so very terrible. Sorry I don’t have any answers for you…
my situation with my husband is different because there was no treatment for him but it’s been 14 months and he’s still hanging in there. I hope that things go very well for you and your husband. Luv, RkkNovember 17, 2019 at 3:53 pm #99337
Thank you for the update on how your husband is feeling. It is good news that the radiation and morphine have helped him feel less pain. I hope his next round of treatment provides further relief.
As a caretaker, you are navigating a lot of complications and worries for your husband and family. Please take care of yourself and let your husband’s doctors know any concerns you have.
Sending prayers and positive thoughts your way.
Regards, MaryNovember 14, 2019 at 2:24 am #99327
My husband had the radio on Tuesday. Yesterday seemed his pain was better, but he was more tired. Hopefully this is just effects of the radio. They gave morphine to him as well.
His oncologist said she will do everything to make his chemo starts in less than 2 weeks (Folfox) and depending of how he is by the time it starts, she will want him to be hospitalized at the start. If it works, then he will be in that chemo until it stops working, and in 2 months time he can go to that trial.
Now… if the Folfox chemo doesn’t work, she said that he will be luck if he can make it to Christmas and the New Year…
November 12, 2019 at 9:46 pm #99320
- This reply was modified 1 year, 8 months ago by Josmb.
Thank you for your update. It sounds like your husband’s doctors have a good treatment plan lined up for him. I hope the Folfox stabilizes the cancer.
I wanted to make an observation about the pain meds our doctors prescribe. Even though they help, we sometimes find reasons not to take pain medications whether fear of addiction, or worrying it will make our thoughts fuzzy, or wanting to soldier through the pain. My understanding is it is important to keep pain well controlled early on, or it can be harder to get it under control later on if it becomes more severe. I hope the radiation works and helps your husband feel better.
Take care, regards, MaryNovember 12, 2019 at 6:35 am #99310
I will look the forum about the Folfox. My husband went to the hospital for his radiotherapy (one session only, in lots of parts of his body) and probably he will have an idea if the oncologist managed to get a trial for him (then he has to decide if he will go for the trial ou Folfox). He is concerned that Folfox would give him even more side effects than Gem+Cis (Capecitebine gave him nearly none side effect, or at least none that would make him feel so bad).
I know that (unless science have a big advance in a short period of time or if a “miracle” happens) one day I would lose him to cholangiocarcinoma, but we were expecting it wouldn’t be any soon and that the chemo could stabilize it.
He hasn’t tried morphine yet for the pain. Right now he is under Codeine, Paracetamol and Ibuprofen. I kept asking him to ask for stronger painkillers so he can at least lay properly in bed and have a good rest (or just feel better, be more mobile, enjoy life better with me and our kid), but he hasn’t done it yet (not sure if he is afraid of addiction or what…), so I really hope that the radiotherapy of today will help him with the pain.
I am not sure if here in UK immunotherapy is available, any idea if it has good effects?
Edit: He just messaged me. Folfox will start in 2 weeks at most and the trial will be available for him in 2 months.
November 6, 2019 at 5:19 pm #99273
- This reply was modified 1 year, 8 months ago by Josmb.
Thank you for posting an update. I really wish you and your husband had gotten better news from the recent scans. It sounds like his doctor is determined to find a good next treatment option, whether a clinical trial or another chemo.
A good number of our patients are treated with Folfox after gem-cis runs its course. If you search the discussion board, you will find patient stories for it. While chemo may not be a miracle cure, for many patients it keeps the cancer stable which is positive as well. I hope the radiation helps with the pain.
Did the doctor offer other ideas about addressing your husband’s discomfort?
I hope the next round of treatment gives a more positive outcome. This cancer is so unpredictable, with its ups and downs and hopefully the next news will be better.
Take care, regards, MaryNovember 6, 2019 at 10:32 am #99272
We have been to the appointment today. Well, we hoped for better news…
He has a new tumour in his lung (2cm), one in the liver (4cm), lymphnodes grew millimeters, bones got worse. It has spread. So he won’t go for 8th cycle of Gem+Cis. He will have a radiotherapy session to improve the pain. About chemo, the oncologist will try to get a new trial for him, or he will go through FOLFOX (she mentioned that usually patients are not responsive to that chemo though…).
So, that’s it. Let’s see…October 28, 2019 at 1:28 am #99224
Thanks for your message. My husband already had a dosage adjustement when the scan showed blood clots (I am not sure how much it was reduced, my husband thinks it was 50%, although I believe he misunderstood the numbers, but it was reduced for sure). And this is what is worrying me lots, not sure if it can be reduced even more..October 27, 2019 at 5:03 pm #99221
It is good to hear your husband feels a little better lately although I wish the chemo side effects were more under control. Oncologists do sometimes adjust the chemo dose and timing to give relief from serious side effects. My impression is that oncologists view chemo treatment as effective for patients even with small adjustments. I don’t recall any research on the impact of dose reductions or delayed treatments for cholangiocarcinoma; clearly the full doses at the recommended schedule would be preferred but doctors and patients may encounter situations where the full dose cannot be tolerated.
Sending positive thoughts and prayers your way that Tuesday’s scans bring good news.
Take care, regards, Mary
October 27, 2019 at 3:14 pm #99220
- This reply was modified 1 year, 9 months ago by bglass. Reason: Added information
My husband is now on the rest week of the 7th cycle, and he has MRI and CT scan on Tuesday. He is now taking a lot longer to recover. At the start of the Gem+Cis chemo he was fine during the rest week, then after 3rd cycle he started to go back to his “normal” in the middle of the rest week. On 6th cycle he only started to feel better on tuesday evening before the chemo (that was on Thursday).
During the appointment right before the 7th cycle the oncologist said that at this point of the chemo all the symptoms that my husband mentioned is very common and many patients take 2 weeks rest instead of one. He chose to not take an extra week to recover at that moment and he started the 7th cycle on the day it was supposed to be, but now he probably will need that extra week before the 8th cycle because he believes his body is very close to the limit it can take from the chemo.
He is very tired, very weak, feet and legs are swollen and lots of pain (but it was told him it can all be the cumulative effect of the chemo and not the disease). He is struggling to do anything. Simple things like preparing his breakfast, walking inside home, getting dressed and even having a shower exhaust him (and make the pains worse), so I am helping him as much as I can. He said that he is getting a bit better now day by day during the rest week but still far from being great.
He is still under anti coagulant shots for the blood clots in the lungs (hopefully it won’t be needed anymore). He was having some bleeding through his nose on the last 2 days. (today it was better, although yesterday I didn’t give him the anticoagulant shot).
All his blood tests were ok last time (on 16th October).
So let’s see what the scans on tuesday will show and hoping for the best. After 8th cycle we hope he can get some radio or something else (we are really afraid to interrupt totally the treatment and the disease mutate to something resistant to chemo).
Thanks for readingSeptember 11, 2019 at 5:41 pm #99069
It is nice to hear from you and thank you for posting an update on how your husband is doing with treatment.
Treatment side effects can sometimes be different with each cycle, and stomach problems are not uncommon. Regarding the new finding seen in the scan of the liver, with surgery and other treatments, patients do have spots and scarring that turn up on scans. Doctors monitor these in case they are or become cancer, but until something is determined to be suspicious, try not to worry. If a scan finding raises questions, doctors may send the patient for a different type of scan to get a better look, e.g., a PET scan.
I hope your husband feels better in the coming days and that his treatment continues to keep the cancer well controlled.
Regards, MarySeptember 10, 2019 at 2:31 am #99057
Hello, it is me again.
Well, we had been with the oncologist nearly 2 weeks ago.
-Blood clots: she said it indeed is very common, and that they are small and not so many. She told us to do the anticoagulant medication (shots, he is hating it!) and to not worry much about it. Last time I wrote here was the last time he needed platelet transfusion. He is now on the second week of the 5th cycle (thursday starts the pause week) and on last blood test his platelets were good (above 300-something if I remember well). His hemoglobin was still below the level but still higher than last time, so no transfusion needed.
-The scan: she confirmed that the lymphnodes are smaller, the 2 nodules in the lungs are also smaller. It seems that it even had effect in the bones.
The bit that made us a little bit worried was that she mentioned that sometimes the disease is not visible on the scan at first, but then it become visible after the start of the treatment, and it shows up in the scan as something “scarred” and not as a new tumour without treatment. In a way or other seems the chemo worked on it as well, but then it means he had more methastasis than we thought he had. She mentioned there was something on right side of the liver that she couldn’t confirm 100% if that was also some “scar” like that or what, and to keep na eye on it as well.
So, chemo continues, but apparently in a lower dosage due to the clots. I had understood she would ask another scan to be done by the end of the 6th cycle, but my husband don’t remember she mentioning it (now I don’t know if he doesn’t remember that or if it was me that misunderstood it, since I still have trouble with understanding some different accents around here).
When he stopped taking the Ibuprofen (because of that information we saw that this medication could interfere with platelets) he was in a LOT of pain, so the doctor recommented more steroids to help with that (didn’t help as much as the previous painkiller), but now on second week of this cycle he is not taking those steroids and his pain is a lot lower (he is still not taking the Ibuprofen).
What is making my husband more worried too is that he is having indigestion (he didn’t have it since last year after his operation). So probably he is worrying that is that thing on his right side of the liver messing up with his digestion (or I don’t know if this is a common side effect of the chemo and only just now he is having that like this). Also, his tiredness was a bit extreme yesterday and he is still tired today, although I checked his blood pressure yesterday and it was low (it was around 100/680, and his “normal” with the medicine is around 130/90, since he is a big man who always had high blood pressure). I am not surprised that he was feeling like he was (when my blood pressure gets to that level I don’t feel well), so somehow the chemo is dropping his blood pressure again.
That and all the worries of people who deal with this disease (plus the fact he is always worrying about something even when something is fine) and having a 2 years old kid on “terrible two” and not being unable to help me as much as he used to do before makes him feel down sometimes.
I think that’s all for now. Thanks for reading again and for all the support!
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