Please help!

Hi and a warm welcome to the Online Community. I'm sorry to read of your husband's (& yours) endless waiting for test results, it's so very debilitating but your joining this forum will help you connect with others making the same journey and offer support.

I myself have a different type of cancer, I just dropped by and noticed you've not had a reply to your post as yet. By my answering it'll " bump" your post up to the top of the list so hopefully someone will be along soon to chat.

I did some research on CREON pancrelipase) and found that it is a prescription medicine used to treat people who cannot digest food normally because their pancreas does not make enough enzymes.

To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section. 

It’s always good to talk to someone and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two or three working days for replies from our expert team.

Sending welcoming hugs, B xx

Thank you so much for your kind reply, as u can probably tell I was having an emotional rant. I just struggle with the time scale. I wish you well for your future blessings for you and yours.

Hello,

so sorry to hear your news. I called the Macmillian helpline yesterday and asked to speak to the medical team and the nurse was extremely helpful. It was the best conversation I’ve had since we found out my Dad has cancer. Hope you managed to speak to someone. 

I have found that I have to be extremely pushy to get answers and things done with the doctors and hospitals so if you don’t feel like your getting anywhere, keep persevering Thats all I can say. 

xx 

Make sure he takes the Creon it's a fantastic drug and will help give his body the nutrition that it needs. It also helps to make sure that the bowels are working properly.  I was diagnosed in April after having a stent fitted. I have found creon to help with the excessive wind and build up.of pain dure to trapped wind. Now going through chemo. Sometimes things go so slow. Hope it all works out.

Hi Annlouise, thank you for your reply I'm so sorry to hear about your dad, I have called McMillan for advice but feel like a bit of a fraud as my husband has not been told he has Cancer yet just that it might be! It leaves us in a horrible limbo. They can't help me until they know what he has. But they were fantastic just giving me the strength to keep going. I prey I don't have to deal with Cancer.  I'm sending blessings to you and your Dad, positive thoughts.

Hi Holdon, I'm so sorry that you are going through this experience and thank you so much for taking the time to reply. I have so many questions.. my husband had his stent fitted 5 weeks ago now and we still have no diagnosis? He has had 2 biopsies and countless ct- pet- ultrasound tests he has just been told he needs another CT scan this is since the first one in February! Is this similar to your experience? I'm so hoping it's a cyst cause otherwise it's been so long I'm scared he will go downhill fast. Blessings to you and yours.

My diagnosis took a while... my doctor told me that pancreatic cancer can be challenging to diagnose, that biopsy samples often come back negative, even though the tumour is malignant. Luckily the last biopsy I had was malignant so we can move forward with a treatment plan.

How is your husband doing? Hopefully by now you have a diagnosis.

All the best,

Lx

Hi Liberty72, I'm so sorry you are on this journey and hope you have lots of love and support around you? My husband unfortunately got his diagnosis on 17 July (officially) but they have waited to long and he is not a candidate for surgery or chemotherapy due to being very under weight. We feel completely robbed of any chance  he has a feeding tube in at present but is not using it as he should, he is in pain alot. I'm trying really hard to only look forward because I can not change things now. Have they given you any idea where the cancer is? Or what the treatment plan might be? I can only tell u to shout loud and ask lots of questions because time is the enemy until treatment starts x

I send all the positive thoughts and prayers to you I hope u beat it x x 

Yes, I know it is in the posterial head of the pancreas, and that it is pressing against the vien, so we need to do 6 rounds of folfirinox chemo in the hope that the tumour will shrink and allow the whipple procedure to take place to remove the cancer. Then we will do 6 more rounds of folfirinox. Fingers crossed. I just had my first round three days ago. First day after was rough, I was exhaused and in pain, but next two were better.

Can I suggest your husband work with a pain management sprecialist? That's what I did, and it made a work of difference, getting my pain under control.

Wishing you all the best,

Lorix

Hi. I have a stent and am using Creon (I am 56 - diagnosed terminal because of the location of the tumour and being stage 4) so I can speak from my 'vast' experience of all of 3 months since final diagnosis (pancreatic cancer is one of the hardest cancers to find which is why many are stage 4 before they get diagnosed.

I would start with visiting the Pancreatic UK charity - they are doing lots on the Creon use you will find useful but happy to share my experience if it helps.

Jenny