September 7, 2011 at 1:14 am #52590devastatedMember
Thanks to all you for such insightful information. It is so nice to hear from others that share the unfortunate diagnoses of cc.
My husband has stage 4 cc. He has a plastic stent that has worked wonderfully, his tbilli is .4, his alt and ast are normal. The fulfox & oxiplatin have taking a toll. He is not ready to give up but just wants to live. We will be having a full ct scan next tues and md visit on wed. Another wrench in the mix is his incredible night sweats (changes shirts 3x a night, and goes through 4 towels) The doctors are stumped. His testerone level is just about not existed. They are now looking at his adrenal glands. We will be having a cortosol drawn and f/u with endocronlogist on Thurs. Not sure what this will reveal, hopefully some explanation,
Jamie: my husband has had 4 compete rounds with the 2nd and 4th decreassed due to side effects. He has been on round the clock zofran and/or compazine. This last round they added emend and decadron. Not much help, though no vomiting. We had a ct scan done for a possbile ileus, but that showed the lymph nodes are shrinking. We have a full ct scan for next tuesday. We will have to really think and talk about our options. Also, his lymph nodes are Her2 postive which can add a different chemo that may respond with minimal side effects. We are not at hospice yet, the docs believe that there are other options we can try.
Thanks PCL who are an abbundance of information thanks for spelling out the options. I love the quote too.
Thanks for all the support!September 6, 2011 at 7:12 pm #52594nancy246Member
Hi Devastated. Is chemo worth it is a tough question. Some have found great benefit in doing chemo – prolonged life, better quality, etc. Others have not tolerated chemo well and in the long run it probably wasn’t worth it. Has his cancer progressed since the chemo? Like PCL said maybe there is an option for different chemo. During my husband’s chemo he was on naturopathic support (still is) which we believe lessened the side effects of the chemo.
I totally understand how devastating it is to watch your husband suffer and fail. My husband was vibrant, healthy, very active, before cc – it is so tough…
Fighting along side of you in Revelstoke B.C.
NancySeptember 6, 2011 at 4:43 pm #52593pcl1029Member
“My question is How will the cancer without treatment take my husband? I want him to be able to enjoy the days, weeks, months, he has left with me and our children which is all he really enjoys. He is a very simple man. Please advise. “
For your question,It is no practical answer. Medical articles indicated that for intrahepatic CC,untreated,survival of 3.0+/-5.3 months was reported.Biliary stenting with PDT radiation can prolong survival,compared to stent alone,from 3-6 month to 16-21month.
Depends on your husband’s condition(ie; stage of the CC;where it metastasized ,other helath concern such as stent replacement etc and his current mental health ), all of this can play a role in the answer of “cancer without treatment”
But the final decision whether to continue treatment is always,I believe,belonging to your husband the patient after careful consideration .
The following question may be worth of your consideration.
1.Your husband is only 47,very young by the CC population standard,therefore the chance of having a new medication for CURE or having potent but much less toxic side effect treatments to prolong your husband’s life without much suffering within the next 5 years is relative high and reasonable.
2. Is the current chemo works and to what extend? have partial response at least.?Will take a chemo break(consult with the oncologist) helps your husband?
3. If switch to a less strong chemo(ie:just Gemzar only;or Taceva only ,or Xeloda only,or Avastin only ,would it helps him? ask the oncologist and indicated your desire of thinking stopping chemo,they may figure out the minimum and less toxic chemo regimen for your husband and still be effective.(I took Gemzar for 14 months and was well tolerated and no side effect;fulfox is a lot tough);chemoembo without cisplatin but with adriamycin and mitomycin did not make me sick either as well as RFA radiation);you husband may not be cure but it may prolong the survival with less suffering.
4.Get a 2nd opinion on the chemotherapy and the cholangiocarcinoma as a whole at John hopkins to see what they can do.(this will provide both of you comfort and emotional support in the future.)
5. last but not least,consider alternative medicine such as Yoga to relax the mind and the body;,acupuncture for pain; Chinese herbal medicine from an EXPERIENCED practitioner to support and maintain the general health of your husband if you choose otherwise.
Base on what I understand,you are in the medical industry,you took great care of your husband,you even got 2nd opinion at Dana Faber;you fight hard for your husband to be treated at Mass General and appreciated having a good team working for your husband. You also take care of 3 college bound children .In short,you work hard for your family and you are not a quitter.
I took the liberty to quote from the Bible the following:
“No testing has overtaken you that is not common to everyone.God is faithful,and he will not let you be tested beyond your strength,but with the testing he will also provide the way out so that you be able to endure it.”1 Corinthians10:13.
God bless.September 6, 2011 at 2:38 pm #52592lainyMember
Dear Connie, My heart is crying with you as I was in your place 9 months ago today. I also still use words like “we”, “us” and still have his voice on my phone message. Connie, it does ease up as you go along. I am not lonely, my family and friends are wonderful but there is a BIG hole here and that’s ok. Somehow I think if I didn’t feel as I do our whole beautiful honeymoon of 17 years would not have been true.
We cannot go back and think about the decisions we made as that impedes our going forward. I prefer to feel that Teddy & I made all the right decisions. It was his decision not to chemo as the ONC said it would only buy him a month and he wanted more quality time. It was the right decision.
You know by now what a believer I am that our husbands are watching over us and even though Teddy doesn’t come around as much as he used to he is here.
Take care and go forward as that is what Jerry would want you do to……when you are ready.September 6, 2011 at 2:28 pm #52591lainyMember
Dear Devastated, I am not sure where to begin so here goes. I am feeling so terrible for your family but would like to know what prognosis the doctors have given? Is there a treatment plan they suggest? Have they told you to call Hospice? It is hard to tell you what to expect not knowing what the doctors have told you. If you can give us a tad more information on the prognosis, I will send you an e mail. Be Strong, we are here for you!September 6, 2011 at 7:08 am #525892kidsejcaMember
I understand your frustrations and the pain you feel looking at your husband everyday and wondering what happened to that once very energetic and healthy person turned into a helpless no appetite and losing weight guy. My husband “is” exactly like that (I still can’t afford to describe him in past tense), and it breaks my heart so I know how you feel. He was diagnosed of the same intrahepatic cc w/ mets last March 18th, 2011 and he was taken away from me last July 8th and I am still mad and I can’t tell you how I feel about chemo at that stage. I do discouraged it so very much because of what my hubby have to endure when they put him on cis/gems and clinical trial pill; and of course after biliary ducts stents and all those nasty stuff they recommend like biopsies that I think just worsen their situation. Please understand the quality of his life is what you need to focus now not the quantity…he will be better off with pain meds and this is just my experience and my own opinion. I hope you can find comfort that you are not alone and we’ve been on that road before…be strong and spend more time precious time with him and give him your utmost love…I’m including you in my prayers…. Connie who lost my beloved Jerry from CC…September 6, 2011 at 3:58 am #52588jamie-dMember
I was diagnosed at 51 with intrahepatic cc with mets. I will be 55 this month. I just had my 12th dose of Folfox. Has he had a scan to see if the Folfox has shrunk anything? My last 2 scans showed improvement. I think whether to continue chemo is a totally personal decision. Only your husband knows whether it is worth the side effects or not. My first couple of rounds were rough and I ended up in the hospital. They have decreased the dose and gone from every 2 weeks to 3 weeks due to my bone marrow side effects. I’ll know next Monday the results from a scan this week to see if it is still doing any good at this level. Can you talk to his Dr about decreasing dose or extending time between treatments? If he hasn’t had a scan yet to determine if it is doing any good I also think that would be worth discussing. I also think you need to talk to Dr about the nausea and pain. They should be able to offer other meds to make him comfortable and not nauseated. I take Zofran the day of treatment and 4 days after. If I still am nauseated I have Compazine that I take after that. I can’t offer any insight about what happens after treatment stops because I have not experienced it yet, but I am sure others will offer their experiences. My prayers are with you and your family. God Bless,
Jamie DSeptember 6, 2011 at 1:49 am #5614devastatedMember
My husband (47 years) was diagnosed with this awful, insidious, cruiel disease on June 18th 2011. This was caught by an allergic reaction trip to hospital. After numberous blood tests, ct scans, biopsie, biliary drains, stents, celiac block, 8 treatments of fulfox chemo, lost of 40lbs I have seen my once vibrant, active, organized, smart, loving husband and father of three, completely fall apart.
He was diagnosed as intrahepatic cholagnioncarcinoma with mets. He left work on a friday afternoon feeling great and then never went back. We are comptemplating if the chemo is worth it. He is so sick, so much pain, nauseous, can’t eat, can’t drink and is so extremly fatigue. IS IT WORTH IT??? My question is How will the cancer without treatment take my husband? I want him to be able to enjoy the days, weeks, months, he has left with me and our children which is all he really enjoys. He is a very simple man. Please adcvise. Truly devasted.
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