December 2, 2011 at 1:25 am #51634sharimayMember
I had gem/cis last year with dex, emend and zofran. I only took the nausea cocktail of drugs on my chemo days. The other days post chemo I took oral zofran and that was it, along with iv fluids for 2 days. I did drop my counts with chemo so I was given Neulasta after my 2nd dose in a cycle. It would bring my white counts up, but not as high as yours have gotten. I also tolerated the chemo will with minimal side effects. I was able to work just about full time. I too am a nurse and didn’t want to take too much dex cause of the side effects. Good luck with your chemo and thoughts to you.
ShariAugust 21, 2011 at 10:38 pm #51633lainyParticipant
Dear Appreciate Help, I would say in your case Knowledge is a very good thing. You have caught on very quickly. Who ever knew many of us would know so much about something we never heard of before! I am sending best wishes for your husband on his next chemo session. This is exactly what I mean when I say fright turns to fight with a game plan. Play it to win it!August 21, 2011 at 10:26 pm #51632
FRIDAY, my husband and I met with our new onocologist for the second time to discuss proposed plan. My husband had 3 cancer recurrences in the “surgical bed” area detected on PET scan 08/12/11.
Between our surgeon and this new onocologist, we have been informed that SURGERY is not an option because of location of cancers; scar tissue, and because the same area was radiated 25 tx previously. It would be most, most dificult to get the margins clear and to do the surgery.
We asked if more radiation txs could be done (had 25 txs last year). We were told it was not an option as it could be toxic.
We discussed another radiation, “radioactive ablation,” which uses a needle proble quided by a CT monitor to heat/radiate areas. Not possible due to location of cancers – surrounded by bowels and cannot go through back due to spine, etc.
So Friday, 08/19/11, chemo was begun using GEMZAR/CISPLATIN. Between doc/lab/and chemo txs, etc., we were at the doc’s office almost all day. No side affects from this initial treatment so far, praise be to God.
Last year’s chemo regimen was GEMZAR/5FU. The 5FU was not tolerated due to blisters in mouth/throat and was discontinued after 3 weeks. GEMZAR was given a total of 5 months. Side affects throughout all were fatigue, several headaches, chills, fever-in which we controlled, and severe abdominal pains.
CHEMO TREATMENT PLAN NOW, beginning 08/19/11 will be:
Day 1 – chemo with GEMZAR/CISPLATIN
Day 8 – chemo with GEMZAR/CISPLATIN
Then he has a week off.
This whole cycle will then be repeated for 6 months duration, with a CT scan 4 months into chemo.
No mention of DEXAMETHASONE being given. We did get ZOFRAN and COMPRAZINE RXs but have not needed them.
I’m now going to research NEULASTA and AVASTIN, after reading here that they are used when counts are low. Some of husband’s counts now are just below normal range. So I’ve been especially concerned.
We really like our new doc, and she has an aggressive, energetic manner in presenting to us that she will to do all that she can to help us battle this cancer.
Thanks to you and all other posts! I plan repeat postings as we continue forward. “A little bit of knowledge is a dangerous thing,” so I am in learning mode more than ever to help my husband.August 20, 2011 at 2:59 am #51631peggypMember
Hi Appreciate Help,
My husband was on gemzar/cisplatin from January 4, 2011 until May 23, 2011. He had 11 treatments during that time. He was told that he was going to have a lot of side effects, but he didn’t experience any other than his counts going very low and being very tired. He was supposed to get chemo once a week for two weeks and then be off a week. This usually didn’t work out because of his low counts. He would have to get a shot of neulasta to bring his counts back up and he was also taking avastin. He had previously taken the 5FU and another drug, but had a severe reaction when he was going through his 17th cycle. He had a lot more side effects with that than he did with the gemzar/cisplatin. Actually, he will be starting chemo again next Friday with the gemzar/cisplatin. His counts have been very low and he hasn’t felt that good this week, so we’ll see. I wish your husband well because we have been fighting this for a little over 3 years now. John never complains; he is so strong–I wish I had his strength. Keep us informed on how your husband does. Take care, PeggyPAugust 19, 2011 at 11:29 pm #51630wallsm1Participant
So it turns out, I am a tricky patient. LOL. My WBC’s have been a little low, so they have been adjusting my chemo accordingly. Last week my WBC was around 3, I took 6 doses of Neupogen and today it was 52.5, can you believe it?? I’m a nurse and I’ve never seen a WBC count that high. Apparently, I am making my oncologist work for her money.
Other than that, chemo is going just fine, no side effects. I don’t vomit and still have my hair. I just got my 4th dose today. I think 2 more doses then on to radiation.
Take Care everyone,
SusieAugust 19, 2011 at 9:48 pm #51629lainyParticipant
Appreciate help, and we are so glad you found us!
I have an idea. I just sent 50 brochures to Mayo Clinic in Scottsdale, of course with their permission. If patients or Caregivers would call their respective hospitals and ask if they could put some brochures in the Oncology department, I don’t think anyone would get turned down. My next step is to approach MD Anderson who will opening up here at the end of September.
Hear that everyone? Mayo and MD in one city!!! AND me!
I believe most large hospitals have an Oncology Social Worker and she would be the one to talk to. I say, let’s blast them with our literature! Heck even 10 brochures would help.
Best of luck on your husband’s Chemo!August 19, 2011 at 8:29 pm #51628gavinModerator
You’re most welcome Appreciate. I came here back in 2008 after my dad was diagnosed and it was the best thing that I could have done. Everyone helped me so much and I also learned so much, and the more that you learn the better informed that you are when dealing with all of this and for making decisions. Plus I found that it helped me so much to be around people who knew what I was going through, and we so know what you are going through right now. I know you say that you wished you had heard of us 14 months ago, but you are here now and we will support you all the way.
My best wishes to you and your husband,
GavinAugust 19, 2011 at 5:41 pm #51627marionsModerator
Appreciate…..It saddens me to know that after 6 years of existence our site is not known to everyone touched by this cancer. Who else can provide the support needed other than those gaining first hand knowledge of this cancer? I am glad that you are here and I am wishing for a great response to the treatment coming your husbandAugust 19, 2011 at 11:52 am #51626
Thank you so much for your comments and information.
I wish I had heard of this website 14 months ago. It has already provided comfort to me, by knowing it is availabile, and in giving me unlimited, updated information about this cancer from others and from all over the world. So thanks again for any imput that assists with my husband’s well being in our continued battle with cholangiocarcinoma!August 19, 2011 at 10:53 am #51625gavinModerator
I have no personal experiences to share on the Gem/Cis combo that your husband is away to start as my dad never had chemo of any type. But that combination treatment has been given to many members or their family members here, and I am sure that some of them will be along soon to share their experiences with you. Also I should add that this combination is seen as a worldwide standard chemo for treating CC.
Here are some links that may be of interest to you regarding Gem/Cis –
I wish your husband every success with this and please let us know how his meeting with the oncologist goes today.
GavinAugust 19, 2011 at 10:07 am #51624
My husband is 14 months post whipple surgery done on 06/23/10. In the past year he received chemo using GEMZAR and 5FU (only @ 3 wks of 5FU due to intolerance), and 25 radiation txs. His 08/12/11 PET scan revealed three cancer recurrences in the “surgical bed” areas. RAS (radioactive ablation) cannot be done as they can’t go through bowel or a spine. So chemo is our only choice right now for this 2nd battle with cancer.
Today, 08/19/11, we meet with his onocologist for a second time to discuss pending treatment more. My husband will also receive his first chemo using GEMZAR and CISPLATIN today.
So, any info on your experiences with this chemo combo of GEMZAR and CISPLATIN would be greatly appreciated (what was the regimen plan for administering the meds including how often weekly, how long each occurence; how many months out, etc.) Thanks so much, in advance.July 12, 2011 at 10:05 pm #51623nancy246Participant
Hi Susie, My husband took Dex and Zofran while on chemo and tolerated the chemo well. He took the Dex on chemo day and post 3 days as well, never experienced side effects from it. It is normally a well tolerated drug to combat the effects of chemo. Glad to hear your first chemo session went well. Take care. NancyJuly 12, 2011 at 8:42 pm #51622pcl1029Member
For information about treating nausea/vomiting please read the “side effects” forum on this web site;I just updated the info. yesterday.
As far as I am concerned ,the information are pretty current and up-to-date in the States. It also provide alternative if you do not want dexamethsone in preventing N/V.But again, you have to discuss with your oncologist because you do not want to offend him/her in taking care of you;Plus they have experiences in using them too.
God bless.July 12, 2011 at 4:35 am #5422wallsm1Participant
So, I had my first dose of Gemzar and Cisplatin on Friday. It’s now Monday and I haven’t felt any side effects. I was pre-medicated with Dexamethasone and Zofran and was told to take Dexamethasone once a day for three days post infusion. I was sent home with Zofran, compazine and ativan and haven’t taken any. Do most people get Dex with chemo?? I’m concerned about being on steroids for an extended period of time. I don’t want the side effects that come along with steroids. I told my oncologist I had concerns about the steroids, so she cut the dose in half but still recommended I take them.
I hope everyone is well and having a good week. Take Care.
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