From Net to stage 4 Cc… Please help
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Hi Supermum,
Glad to see you posting here again and very glad to hear you say that you feel such calmness after making your first post here on the site! I so agree with what you say about anyone lurking around the boards. Please, if anyone is reading the boards and not posting, come join us lurkers, we don’t bite, honestly!!! When I first came here after my dad’s diagnosis it helped me enormously to be around people who know what I felt and what I was going through, and I think that that can be said for so many of us here. None of us have to go through this alone, we can all go through it together and I think that that makes it easier for us all no matter whether we are carers, patients, family or friends. We are in this together.
That’s good that your husband is well today and the agitation is something that many get. I do hope that the dexamethasone helps him here, how has his recovery from the whipples been? We have many members here who either they or their loved ones have gone through the whipples and I am sure that they will be happy to share some experiences or tips with you on that.My dad’s cc was deemed inoperable from diagnosis so he never had surgery of any type so I can’t share any personal experiences on that.
I would agree that your husband is in good hands and I too hope that the Gem/Cis does it’s magic. There is a very good chemo board here on the site and I know that you will find lots of posts there from the members on the site who either they or ther loved ones have went through that treatment. How is your husband dealing with that and any possible side affects? Fingers are crossed for the best possible results from the scan on the 7th and I hope to see you posting in the good news section of the site!
A fellow Scot, Yay!!!! And from Fife too! For our American friends here, the great Kingdom of Fife is a 5 minute car journey away just over the Tay Bridge from Dundee! Made that journey many times myself as I used to go out with a lass years ago from Krikcaldy, the Lang Toun!
Glad to hear that we’ve all helped Supermum, keep coming back and let us know how everything goes. We are here for you.
Hugs,
Gavin
Hello everyone and Thank you so much for all your kind supportive posts, I have actually felt such a lovely calm since my first post and it has really helped to keep me positive.
My husband is well today but a bit agitated, they give him Dexamethasone for 3 days after his treatment then he falls pretty flat for a couple of days afterwards, it’s so hard for him as he is still only 7 weeks post whipples surgery. We are on a break from treatment until the 29th.
Gavin… I too am a fellow scot! I am originally from Fife! I am so sorry to hear about your Dad, but I can tell you he would be very proud of you helping others in this way and I am so grateful for your welcome. My husband had his whipples at Addenbrookes in Cambridge but is now being looked after by Dr Peter Harper at the London Oncology Clinic In Harley street, we are very lucky to have him, he is very straight but also very positive with us and he does great things! He has been treating a lady with lung cancer for 12 years and she is well into her 80’s! I can’t ask for more at the moment, I am just praying that the Gem/cis is doing its magic as we have never had any good news so far.
Reacher… Thank you so much for your link, Belgium is very close to us and I am going to mention it to the clinic. My husbands scan will be around the 7th too so let’s pray for a double celebration, we need one!!!! Hope you are both ok this weekend.
Thank you once again for making me so welcome and to anyone lurking and afraid to post, this has REALLY helped and I wish I had posted sooner.
Lots of love to all xxxx
Dear Supermum,
I would like to share this radiation treatment with you if your husband is considered a candidate.
It is called VERO. Google it.
http://www.youtube.com/watch?v=YFoAC_nmPdgCurrently, there are only about 20 in the world.
I know there are two in Belgium and one in Milan.
In Vancouver, the BC cancer agency is fundraising to bring this high tech piece of equipment
to the city.My husband also has stage 4 cholangeocarcinoma radiating from the bile duct down and around an the SMA artery and left renal vein. He had a d double gastric bypass , as well as, these two tumours were clipped or marked in case radiation is used as a treatment.
Like your hubby, mine has had 4 cycles of cisplatin and gemcitabine.
He is to have a fifth cycle and his CT scan is Oct. 7!I hope VERO will be an option for both our sweethearts!
Prayers and love for all of you!
ReacherHi Supermum,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your husband, but glad that you have joined us here as you’re in the right place for support and help and I know that you will get loads of both from everyone here.. Not really much that I can add to what the others have said to you already, but going full guns blazing, that’s fighting talk and I love hearing that!
I too am from the UK, Dundee in Scotland and my dad was diagnosed and treated up here. He had PDT as his treatment. Here is a link to AMMF that is a UK site and charity and you will find a lot of UK specific related info there.
Where was your husband’s consultant in London based if you don’t mind me asking? Like the others have said, the search forum function will throw up tons of relevant info from the members here and if we can help in any way please just ask. If you wanted any specific UK related info from Helen then please just let me know and I’ll get in touch with her on your behalf if you want.
And please let us know how everything goes. You are not alone in this, we are here for you and we care.
My best wishes to you and your husband,
Gavin
supermum……I agree with the others and try to look at the upper side of the curve. I don’t think it is possible to put up a fight without expecting a positive result.
In regards to radiation therapy, it is widely used in the treatment for this cancer. Vascular invasion, size and location determine the best course of action.
This link allows for a good overview:
http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation
As mentioned the Search function will lead you to posts from others and their experiences with the various types of radiation treatments available.
For now I hope for the best positive news after completion with the current Gem/Cis combination.
Hugs,
Marion“Full guns blazing” – The Duke likes the sound of that. That’s the attitude I am trying to stir up in my onc with limited success. After 14 months she finally suggested FoundationOne testing.
Like Lainy said, this is THE place to get the best/latest info. Make use of the Search function. Check out Gavin’s posts on the latest technical reports. Keep notes of what you find and where – make liberal use of Bookmarks to find stuff later.
As much as oncologists can tell you what you might expect, we are living it 24×7. Come to think about it, I’ve never come across a physician here with CC. Maybe that’s the secret – become a doctor.
Duke
Dear Supermum, welcome to the best place to be for CC support! I am so very sorry to read about your husband and my husband started out exactly like yours! In the Ampulla of Vater. That was 9 years ago and there was no treatment plan after surgery for it at that time and location. It returned 3 years later and he had Cyber Knife which bought him another 2 years. My Teddy went through an aborted Whipple and then 10 days later the real deal also with clear margins. The good part for your husband is the ONCs are more aggressive now and there are newer things to try. Teddy’s never MET anywhere, just kept returning to the same place. I am so sorry but looks like Supermum has just turned in to Super Woman. I am glad your husband healed rather quickly from the Whipple and at this point I would probably stick with what you are doing especially since your ONC is not afraid to change up treatment is necessary. Please come here as often as you want and while I am glad you found us wish you didn’t have to. Also please keep us posted on hubby’s progress as we truly care.
This is my first post on this site, I am desperate for some help.
My gorgeous 42 year old husband became jaundiced on June 14th. After various ultrasounds and CT’s they discovered a 1.5 cm mass in the ampullary of vater. My Husband had whipples on the 28th of July and has recovered Amazingly well with no complications what so ever. We were told at the follow up that his tumour was from the distant bile duct, 3.7cms with extensive vascular invasion, but clear margins, they graded it T3N1M0. The tumour was a mixed Neuroendocrine/adenomocarcenoma. The NHS service here in England offered him entry to the BILCAP trial but I was spooked by how serious This had become and sought a second opinion in London. The consultant we have in London recommended Gemcitabine/cisplatin chemo as adjuvant therapy, he explained the seriousness of this disease and recommended going full guns blazing at it. He requested a base line PET and our worst nightmares were confirmed when after only 6 weeks since whipples we had extensive liver metastasis. We were now told my husband had stage 4 Cholangiocarcinoma. The Gemcitabine/ cisplatin followed the next day and we are doing 21 day cycles with a PET after the 2nd cycle so we have just had our 2nd infusion. The plan is to stick with this for 2 cycles then scan for shrinkage, if no shrinkage then change of drugs. Our oncologist has also mentioned Radiotherapy as a possibility, does anyone have any reccomendations on this? Meanwhile my husbands tumour has gone to foundation one to be tested for mutations and we are following strict diets with plenty of garlic, curcumin etc. I am absolutely desperate for any help or reccomendations, we have three beautiful children under 5 years old!
Thank you so much for listening and any help you can pass on. Lots of love to all. X
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