middlesister1
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Dear Kate,
I’m sorry for the delayed response. I used to point member to a link on “hints” for chemo, but I searched this morning and could not find the original posts. I’m going to post the link in case some more knowledgeable with new format may be able to point you there :
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13069
Mom went through 3 cycles of Gem/Cis 4 years ago and just finished 2 of 3 cycles this week. Going back to first experience, we wish we had a port put in right at the start. One of her most challenging things was them being able to find a vein. She had bad veins to begin with, and the chemo will make it worse.
Patients can get very cold during the treatments, so if using IV, I’d suggest buying a nice fleece vest for chemo days. It allows them to keep warm and still allows them to put in the IVs.
Expect the days to be LONG- blood taken and then waiting for results before they can start. First time around, we were at Univ of MD and the wait for a chair could take a few hours too. This time, she is having infusions at local hospital (still reporting back to UMD and will go there for surgery/radiation) and it is much quicker and a more calming environment, but still there from 730 to 330. We even feel comfortable not staying with her the whole day.
Mom’s first cycle was lousy with nausea, to the point she was ready to say no more, but then they added some IV fluids before the chemo and also having her take a steroid (dexamethasone) on days 2-4 when home. It was amazing that with these 2 simple things added, she no longer needed all the anti-nausea drugs ( she still gets EMEND in IV on chemo days and reglan before the chemo). And, this was in 2013, so it was definitely worth it 🙂
Other thought- during first cycle, they tried to have her take the EMEND by pill at home after the chemo. In addition to not working as well, the insurance company wanted hundreds of dollars for 6 pills whereas having it administered in hospital made it 100% covered by insurance ( medicare and secondary).
Some members can even keep working while on chemo. I think that age might have a lot to do with this ( but others can chime in). Mom is 77 now, and we told her we will not make her get a job while undergoing chemo 🙂 This time around, she is very tired and does not like the “chemo brain”. However, we ( and her ONC), keep telling her that for her age, she is putting unrealistic expectations on herself. Last week, she had chemo on Tues and on Friday went to Motor Vehicles to update car registration issues. She drove herself and waited the hour.
So… simple answer- expect fatigue. If he is having nausea, talk to ONC- with all the anti-nausea meds, they can control. However, many here have said how adding fluids and steroids can help too. If these are not in his protocol, you can ask/suggest. Speak up because they can adjust and make better. I wonder why they routinely don’t give fluids first- I guess it takes another hour, but even when my husband had colon cancer, adding the fluids beforehand tremendously helped his tolerance. However, Steroids can also make it hard to sleep, so take earlier in the day ( I saw one study said by 2pm).
Mom typically loves water, but now wants ginger ale. Cravings and what tastes good will change- just go with it.
First time around, Mom got dehydrated. I think she had a harder time than most first cycle since she was still recouping from surgery. However, if your husband gets sick a lot and is not getting fluids in ( This is NOT the norm) , err on side of caution and get him in for some IV fluids.
The ONC can do a great job on making chemo tolerable- speak up.
From a “care taker” point of view, where I think I could have done better ( but telling myself I did best I could):
We should have had port put in earlier
We should have taken Mom back in for IV fluids sooner
We should have addressed constipation sooner
If your husband is tired, tell him it’s ok to do nothing. Although Mom is going through this again, she had 3 years of treatment-free normal life. We hope to get back to that state again. I wish you and your family success and best wishes,
Catherine
I will add another YEAH!!!!!! And, love seeing your picture 🙂 As a mother of a daughter who is a visiting professor and on the job market, I know that if your husband managed to become a prof, he can overcome anything.
best wishes,
Catherine
Dear Kasotak,
A very warm welcome to our group. Your story shows how important it is to get the routine blood tests- that’s how my mother’s was first found too. The diagnosis can be scary- especially once you figure out what it is. However, great strides have been made in just the past few years which are not reflected yet in the publications. And, the “good news” is that you were able to have successful surgery- YEAH!!!! I hope chemo goes smoothly and you can get back to living a normal life again soon.
Best wishes,
Catherine
Thank you Carla ( and all others for well wishes).
Molly- I totally agree with you on the PET- I should have pushed for this 6 months ago. Dr M said that in defense of the ONC, there are guidelines that say each patient should be limited to 3 PETS in a lifetime for a disease unless the doctor resets the clock. The ONC made me feel better by saying that if it recurred, we would see it near the bile duct and then could check the rest of body with PET. However, we found this logic did not work. Also, helpful info here reported ( I think from Mary) that after 2 years, recurrence is more likely to manifest itself not in the original location.
Guess I forgot to update that when we finally got the PET, it showed the cancer was also back close to original location too- not just the abdominal nodule It didn’t give us a warm fuzzy that CT did not show recurrence near liver. So, consult with surgeon was a waste of day- he would give no treatment plan until her case was presented to tumor board since he saw the liver/bile duct issue. We waited 2 weeks for tumor board, and then they said they wanted an MRI of the liver . I am not sure why when the surgeon pulled up the PET with us in the office with him, why did he not then say he needed to MRI to show more detail in the liver area. After the tumor board, we said if all agree chemo first, let’s start it. We know that at least the abdominal met was there since Jan, and we want to move forward. We did not want to wait for MRI and another board meeting.
Mom had first chemo on Monday and I think we are looking at 3 cycles ( 9 weeks total) and then scan before abdominal surgery ( and then local treatment on the liver). Our new ONC closer to home ( just for chemo administration) was “warned” about me, but was very supportive. At first she said 4 cycles, but finally she asked what treatment plan I wanted to see- I think 4 cycles would be very hard on Mom so I said 2-3 , And, we are planning her treatments so that she will be going to IN to see my daughter get her PhD on Dec 16. After surviving 4 years to be there, she does not plan on missing it.
Unfortunately, all agree that there is no easy by the book treatment plan. I worry that I should have pushed for biopsy before chemo (needle one was unsuccessful) so we could get Foundation One typing sooner. However, we had a few docs say they thought chemo first would be beneficial, so we are going with it.
So… after 2 or 3 cycles we will have a scan. However, since CT didn’t show the recurrence, guess we will have to ask what type of scan.
However, the good news is that 4 years ago when Mom’s cancer was limited to the bile duct, they told us 12 months. Now, even with the recurrence there and the abdominal met, they are willing to treat and surgeon said his goal is for another 4 years. Treatment options have gotten better and I hope they continue to do so. ( i think I did write these thoughts in another thread- but willing to say multiple times)
Best wishes to all – and thank you,
love and hugs,
CatherineHi Maggie-
I am so sorry your mother had the recurrence, but wanted to welcome you back and look forward to hearing of many more years of NED in her future.
Best wishes,
CatherineTilly,
I am so sorry for the added delays and worries. Lots of bests wishes are coming your way that the results are good and you can get back on a treatment plan soon.
Take care,
CatherineMatt-
Congratulations and thank you for sharing hope! Also, the info on the Keytruda I’m sure will be helpful to many.
Take care,
CatherineDear Rod (Diezeldoo),
I am so very sorry to hear that you lost your wife so quickly to this lousy disease. For my mother, we were fortunate that routing bloodwork showed some elevated liver numbers and then a great GP decided to investigate further.
I’m not sure how much you have read, but this board- and the whole CC foundation- was started by people like yourself who lost a loved one to CC.
You are amazing to already be thinking of others and be willing to share- but also take time to grieve and take care of yourself.
My heartfelt condolences and thanks are with you-
Catherine
Dear Melinda-
Thank you for the update- you have been in my thoughts and prayers.
Best part is great quality of life- YEAH!!!!!!!!!!
Love and hugs,
CatherineBridgette,
So sorry for the delay, but thinking of you. Right now, we’re in “limbo” with Mom- long weekend with great weather forecast coming up- our goal will be to take advantage of the time we have together with her feeling well.Best wishes coming your way,
CatherineThank you- Mom is looking at chemo, surgery (for abdominal met) , and undetermined treatment ( maybe nanoknife) for the original location. Tumor board is meeting next Tues so we will get their recommended treatment plan.
HOWEVER – NOTES TO ALL HERE— In Nov 2013, when Mom was not operable, they said 12 months and chemo could give us another 3. We have been living the good life of no treatment and just having occasional scans
Now, even with cancer coming back, surgeon, ONC, and IR are NOT giving the prognosis that all is lost. Even the surgeon told us last week that we gave her 3 years and we will do the same again.
When diagnosed in 2013, the dream ( not realistic then) was for Mom to see my daughter get her PhD . Graduation is 16 Dec 2017, and she will be there,
My love is with you all,
Catherine
YEAH!!!!!!!!
Thank you. I greedily needed to see good news today. Also, LOVE the quick results.
My hugs and happiness are with you and your family,
CatherineDear Victoria,
Congratulations to your husband and family on such a tremendous milestone. When Mom was first diagnosed, her ONC said that CC never went into remission. However, after we got to the NED point for a few scans, her IR doc did use the term. I agree that most people understand what it means to be in remission, so we were using it to describe Mom’s situation before the doctors voiced it. However, I think NED is a spectacular label too
To me, No Evidence of Disease sounded more positive than remission, but maybe because it was not something we ever thought we’d hear ( Mom didn’t have surgery).In general, I think many doctors are leaning so far on trying to prepare us for the worst, that they forget to convey where there should be hope too.
I hope from here on out he bounces back quickly and life can get back on track.
I am so happy for you!!!!!
Catherine
