My mom recently diagnosed as unresectable metastatic cholangiocarc.
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Hi Katrin,
Thank you very much for your reply and sorry for your anxiety and confusion wish you will find no metastasis, try to be more optimistic.Recently i discovered that it isn’t Gemzar which caused that horrible pain, oxaliplatin causes phlebitis (as if you are drawing a red line over her vein) so when they give Gemzar after it she couldn’t tolerate. so finally to solve this problem she received oxali. in a line then we used another line for Gemzar, yes gemzar causes pain but not as severe when given in the same line where oxali. received.
Dear Fatima,
I have been treated twice with Gemzar/Cisplatin (which kept it stable). I had no problem with either drug either time (other than needing a Nupagen shot the day before chemo to raise my white blood cells back up each time). Some people have trouble with that shot too. I did not.
However, my late husband who has another type of cancer was treated with Gemzar at Sloan Kettering in New York City in 2001. It caused him a great deal of pain. The doctor couldn’t figure out why. As the tumor was pushing the skin out, we noticed a remarkable shrinkage of same the next day; however, he did not wish to return to that therapy.
I know that if they put contrast dye in your veins rapidly during a CT scan, it will cause a sharp pain a few inches up the arm initially.
Wish I could help more. I am pursuing a second opinion for the next treatment type at MD Anderson in Houston. It was successfully resected from my liver, but eventually metasticized to a lymph node and possibly to the pancreas… Can’t tell if it is active or dead (neucrotic) yet.
Hi,
I will hold off giving cetuximab until after the CAT scan or MRI result after finishing the 2nd cycle of the regimen. You may have google and saw the following information;but just in case, I copy it here again for you.[See BOXED WARNING and DOSAGE AND ADMINISTRATION.]
Cardiopulmonary Arrest
Cardiopulmonary arrest and/or sudden death occurred in 4 (2%) of 208 patients treated with radiation therapy and Erbitux as compared to none of 212 patients treated with radiation therapy alone in a randomized, controlled trial in patients with SCCHN. Three patients with prior history of coronary artery disease died at home, with myocardial infarction as the presumed cause of death. One of these patients had arrhythmia and one had congestive heart failure. Death occurred 27, 32, and 43 days after the last dose of Erbitux. One patient with no prior history of coronary artery disease died one day after the last dose of Erbitux. Carefully consider use of Erbitux in combination with radiation therapy in head and neck cancer patients with a history of coronary artery disease, congestive heart failure, or arrhythmias in light of these risks. Closely monitor serum electrolytes, including serum magnesium, potassium, and calcium, during and after Erbitux.
And for cadiovascular : peripheral edema=10% for Erbitux; 20% for Gemcitabline and 5% for oxaliplatin.
EGFR expression testing should be done prior to Eribtux treatment as recommended.
BTW,your oncologist is right,this GEMOX+cetuximab ,even in USA,is still under clinical trials.The final long term outcome is still uncertain.God bless.
Hi,
she received radiotherapy on lumbar vertebrae then she started chemo (one cycle) after it she is still complaining from rt lower limb pain so the gave her another session of radio over sacrum and sacroiliac she finished it last wednesday, her 2nd cycle of chemo will be on next monday (GEMOX)Hi,
Can you tell me what is your current regimens for your mom?
chemo and radiation? I am a bit confused.
I will be here for a while.
God bless.Hi,
i want to share you my mother’s last updates, she completed her first cycle of GEMOX her hemoglobin, WBCs and platelets decreased, also she took another 5 days of radiotherapy on her sacrum and sacroiliac joint as she didn’t receive radiation over them in the first session this time pain improved by 10% only which is not a good sign.
The other important thing is that i asked her oncologist today to add cetuximab (Erbitux) to her regimen actually he didn’t support the idea very much but when i insisted he accepted but on one condition which is to accept that it is a drug under trial and may not be effective. I want to know your experience with that drug, its side effects are scary espicially cardiopulmonary arrest in patients on radiotherapy. Her oncologist said it is safe and only acne-like rash is its side effect. please i need you opinion i’m really confused.
Thanks.Hi,
Yes ,if it works the chemo will give objective response (included complete (100%) or partial response(>25-30% shrinkage); not to mention the stable response ;the average effectiveness fox GEMOX is between 22-36% but result is better if your mum’s bilirubin is<2.5 the upper limit of normal. Normally the doctor will continue the GEMOX unitl it does not work and to judge that the oncologist will do CAT SACN or MRI or PET to confirm. I saw on this web site physicians switch to other chemo regimen as short as less than one chemo cycle because the adverse reactions of the regimen. But in general, it takes 6-8 cycles or after 2-3 months before the oncologist order scans to evaluate the effectiveness.
Tarceva does work well in the first couple months,then because of drug resistance,it’s effectiveness will be lost over time(like in months rather in years.)
My suggestion,I think the less needles your mom saw,the more happy she will be.So at this point I will not persuit the infusions of high dose of vitamin C ;homeopathic treatments and the like. so far I do not see any evident-based good result come from them. You can look under the experience forum of this web site for the current thinking of CAM(complimentary and alternative
Treatments. ) I know acupuncture and Yoga and Qigong helps the symptoms of nausea and vomiting.
I myself took maitake fraction PRO 4X extracts BID for 2 years,milk thistle
1000mg BIDand Celebrex 400mg BID FOR 2years and the intrahepatic CCA comes back.
In 13 randomized studies about Thymus extracts,5 suggested may have some benefits,however the low average methodological quality of the trials and overt contradictions in terms of outcomes prevented firm conclusion.Thymus preparations can cause severe allergic reactions and possibly serous infections when injection.—from May 2011 ,literature review version19.2 by upto date.com.
Although there are little evidence to support an important role for Vitamin C and other anti-oxidants like co emzyne Q in cancer treatments,many patients take them anyway,but concern have been raised as to a potentially detrimental impact of vitamin C intake on the anti tumor efficacy of cytotoxic chemo agents
(Heaney M Let al. vitamins antagonizes the cytotoxic effects of antineoplastic drugs. Cancer Res 2008; 68:8031) With regard to hyperthermia therapy, sorry,I do not know anything about it
At this point,make sure you mom eats well,hydration more especially the day before and the day of treatment,it will make her veins easier to find and bigger.
Try to do things one day at a time as you may know already there are still a lot limitations on the conventional medical treatments.We can,including myself,can just do what we can to help ourselves,the rest is really depends on God’s grace and mercy.
God bless .Fatema…. hydration is extremely important and should be consumes almost to the point of feeling excessive. As they say: flush, flush, the chemicals out of your system. Additionally I made sure for my husband to have regular bowel movement. We used stool softeners (not laxatives.) We began with one capsule, daily, until bowel movement began to increase. We then cut back on the dosage to every other day – seems that everything backs up in the lower bowel and continues to work its way up until blockage occurs. I am also a strong believer in liquid glycerin suppositories. (Our Kris would call it: her little bullets.)
Additionally I would encourage your Mom to move around as it encourages digestion. And, some foods may cause more problems than others for example: meats may be more difficult to digest than rice.
All my best wishes,
MarionHi, thanks Percy, Marions and Byron for replies, i’ll tell them to try to find a larger vein next time, i don’t know for how long this will work as i know veins become less available with chemo, mother now is complaining from constipation and i’m trying to give her good hydration.
Percy i’m so depressed i sent an e.mail to the author of the “SRFA in unresectable cholangiocarcin.” but unfortunately he replied that her condition will not be suitable as there must be a safety margin of 0.5-1 cm so it couldn’t be used in multinodular type as there may not be sufficient liver tissue after ablation. I sent an e.mail to a hospital in germany where they use hyperthermia in treatment and their reply was
“As there is a wide spread metastatic disease a treatment consisting of whole body hyperthermia together with chemotherapy using the drugs Oxaliplatin and Gemcitabine. We also could use local hyperthermia on the different metastatic sites.In addition we would perform complementary treatments to support the immune system, to reduce chemotherapy- related side effects and to improve the quality of life. These are treatments like infusions with high doses of antioxidants and vitamins, infusions with homeopathic medications for detoxification, immunomodulation with thymus peptides, magnet field therapy, ozone therapy, oxygen therapy and physiotherapy.Tarceva is not likely to work in cholangiocarcinoma (also the side effects are significant).
“
http://www.hospitaldrherzog.de/
what do you think??? i want to ask about something more, is it possible for the tumor to regress in size with chemo.?? and if yes after how many cycles of chemo should we evaluate???
Thanks,Fatemah, I have also experienced some pain in my arm related to receiving Gemzar. If it happens they wrap warm blankets around my arm and reduce the rate of flow of the Gemzar. (as someone has already noted). The nurse also said it helps to have the IV into as large a vein as possible. With the IV in the back of my hand I had quite a bit of pain. But, with the IV in a larger vein in the arm there was quite a bit less pain involved. “Slow the flow”. :0)
Fatema… I have been told that about 50% of all patients experience pain at the IV site with Gemzar infusion. The majority of patients opt for a port (central lines) as this will eliminate the problem.
I am surprised to hear that your Mom already is experiencing cold sensitivity or possible peripheral neuropathy. Both symptoms are not uncommon to Oxiliplatin and can (over time) be cumulative.
I would take Gerry’s suggestion to heart and discuss it with the physician. Another interesting development: I had spoken with an oncology nurse and she had suggested:
1000 mg. Calcium Gluconate and 1000 mg. Magnesium Sulfate both before and after Oxaliplatin infusion. Supposedly it takes some time for this to work, but when and if it does, it really helps the patient.
Again, this is something you need to discuss with the physician. I don’t know whether Sanofi-Adventis distributes Oxiliplatin in your area of the world but if so then I would contact the company and ask for confirmation.
Please, stay in touch. We care.
All my best wishes,
MarionHi,
Did you ask for interventional radiologist consult with regard to radioembolization using Y 90?
Base on the message board and some articles I read,Mayo Clinic first recommendation is radioembo.before chemoembolization and RFA for CC involving such a large areaof the liver.But again,this is only applied to CC that did not metastasized. And make sure the nurse flush the port with enough saline between oxaliplatin and Gemara to minize the problem.
God bless.Hi,
I took gemzar for 14month with no problems except mild nausea and vomiting toward the end of the 14month treatment.
Yes,Gemzar did not cause any pain for me at the site of injection,a little burning feeling at times. Gemzar should be diluted down to total volume of 250ml -300mgof saline(ie:mine is 1750mg in saline 275ml- the drug volume+the 250mlsaline) and yes,it should give it within 30 min for the whole thing.One way to avoid the injection site problem is to get your mom an IV injection port so she doesn’t need to be stick every time.
God bless.Hi Gerry, thanks for your reply wish u and my mom speed recovery. The nurse told me that pain at injection site usually occur with gemzar (although i searched the net and i found that it is a rare side effect) but also she told me that she couldn’t slow down the infusion as it increases drug toxicity which i found it true while i was searching the net so take care. If u please i want to ask u something, did that combination work with u? the oncologist told us that if neuropathy progressed to grade I or II we will stop oxaliplatin!!
Thanks.Hi Fatema
I’m sorry to hear about your Mom. I had the same chemo combination as your Mom – it appears to be the treatment of choice for CC. I also found it painful at first but I got good advice here, which worked. The oncology nurse placed a small warm cloth at the cannula, she also reduced the flow of the drug, which together worked for me. Hyperthesia and tingling sensations on fingers and tip of nose are quite usual also.I expect others to reply soon to share their experience.
Take care
Gerry
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