Information and advice please

[Pete12]

Hi. My name is Pete, I am 63 years of age. Please excuse me if I "ramble on" as I've never used a Forum before. A brief history surrounding my problem.....In March this year I felt unwell and started to turn yellow. I was admitted to hospital and had an urgent MRI scan which revealed a 1cm tumour in my bile duct. They also told me at that time that the cancer had spread to my liver and that nothing could be done for me, so I went home and started to make the "necessary arrangements". However, at a further meeting with a consultant at xx I was advised that I could have a Whipple procedure, and that it was unlikely that the cancer had spread to my liver. I had my Whipple on 6th June this year. which went well. Unfortunately a few days after the op I contracted an infection and they had to "unclip" my wound, They decided not to close the wound but let it heal naturally. I was in the hospital for seven weeks before I was discharged. For the last three and a half months I have to have the wound dressed on a daily basis and although there has been some sign of healing it still bleeds quite a bit. All I am told by the hospital is that it will heal eventually. Has anyone else had this problem, and if so, how long did it take for the wound to heal. Another problem I have is that I feel "lightheaded" all the time. Following a blood test several weeks ago it revealed my blood count was low and I was prescribed iron tablets but they don't seem to have helped much. Has anyone else had this problem? Sorry for the long-winded post.

[PCUK Nurse Dianne]

Thanks Pete for joining the forum, and welcome.

I am sorry to hear of your delayed recovery post surgery, and may be able to explain some issues,however I still encourage other forum members to respond.

I am sure this has been a difficult time for you with a long time in hospital and also the delayed wound healing. This can be a common way of allowing infected wounds to heal, allowing them to heal (called granulate) from the inside of the wound, and unfortunately this can take some time. If the wound is bleeding this does show signs that there is healthy tissue. I imagine that you have district nurses doing this for you. Do you have any follow up appointments with any of your care team or even an appointment with the 'Tissue Viability' (specialist team dealing with wound issues) team at your local hospital?

The light headed feeling can be related to a low haemoglobin (you mention your blood count was low). It would be important to know how low, and also if this is being followed up either by your GP or local team. Please do feel free to be in touch if you wish to discuss further. Our support service is open from 10-4pm Monday to Friday (020 3535 7099 or email: support@pancreaticcancer.org.uk)if we can help with this.

I am sure there may also be some forum members who have had a similar experience so please do feel free to respond to Pete.

Dianne

Specialist Pancreatic Cancer Nurse

Support Team

[J_T]

Hi Pete, I have no experience of what you are going through but wanted to welcome you to the forum. Please don't apologise for anything and we have posts a lot longer than yours! Lol

It sounds like you have had a bit of a rough time but from what Dianne says it sounds like things are going in the right direction if a bit on the slow side!

I hope things keep progressing favourably, do keep us updated. Everyone's experience is so different so its good to get different perspectives and acquire more knowledge on the different situations.

Good luck.

Julia x

[Pete12]

Thank you Julia for your kind words and welcome. I will be submitting further posts on my progress, and I hope I will be able to be of some help to others on the site in the future as it is really important to be able to correspond with others going through this difficult time in our lives.

And a big thank you to Dianne for the quick response. I have a further blood test (fasting) at my GP scheduled for the 1st October, I believe to test for diabetis. I have a further meeting with the Consultant on 21st October, but if it goes like the last one a few weeks ago it will be a waste of time. This one lasted about 3 minutes. He removed the dressing to look at the wound and then discovered he had nothing to redress it with. he eventually found a small dressing which only covered 2 thirds of the wound leaving the remainder uncovered. He said it will take time to heal, and that I would not be able to have Chemotherapy until the wound has healed (disturbing) I had to go straight to my GP nurse who kindly saw me at short notice and dressed the wound properly. She was furious and advised I should complain ( I haven't). I was seen by the "tissue viability" team whilst I was in hospital with a view to using a vacuum dressing but this was not possible as part of my intestine was visable at that. time Just another quick question. At what stage should I have a scan to determine if there is any further problems.

[J_T]

blimey Pete I would definitely make a formal complaint to the hospital, that is not good at all! They can't address these issues unless they know about them. I made a complaint about two of our district nurses, not our regular ones. I thought a long time about doing it but glad I did because the process helped me and they were very understanding and dealt with it to my satisfaction.

I don't know about future scans, as far as I know you usually get them mid chemo course to see if its working, but not sure after Whipple. Hopefully somebody will be along later with more knowledge!

Julia

[sandraW]

Hi Pete, welcome to the forum, sorry to hear about you problems with the wound not healing, sorry not able to give any advice, but just wanted to say "hello" take care sandrax

[PCUK Nurse Dianne]

Hi Pete,

Sorry to hear about the 'minimalist dressing'. Also good question about a CT scan. I am presuming that you may not have had one since your surgery due to the wound healing issues. Do you have an follow up appointment again with your consultant? If not, do you have a specialist nurse who was involved in your care at the time of your surgery. It would be worth contacting the nurse in the first instance to enquire about this. As you are aware until your wound heals you would not be able to have chemotherapy as this will delay wound healing further. If you have a CT scan at this point, it would then need to be repeated closer to the time that you would then be starting chemotherapy, thus making a CT scan sooner another procedure for you and with no immediate gain (so to speak) with more exposure to radiation. Often people will be monitored with their tumour markers (so blood tests of CA 19-9) as a guide, rather than exposure to CT scans. This would be sufficient for you at present until such time that your wound is healed and you are able to proceed to chemotherapy.

Has there been any further discussion about the possibility of a vacuum dressing as this usually does improve the healing process of a large abdominal wound? I am presuming your wound is slowly closing over, it may be worth asking this question again to see if a vacuum dressing would be suitable for you.

Regards,

Dianne

Support Team

[Pete12]

Thank you Dianne for your response. I have a further meeting with the consultant scheduled for 21st October. I also have a specialist nurse who has been very good in sorting out any issues I have had regarding medication etc. I will contact her regarding the issue of scan and vacuum dressing as you advise. I also attend my GP surgery on a daily basis to have the dressing changed by the practice nurse, and she has been very supportive also. I will keep you informed of progress.

Cheers

Pete

[Johnnathan]

Pete, Do also remind your GP that you have had some gut removed at your Whipple's operation and that you don't absorb things very well, so your general vitamin and mineral levels may be down. This may partly explain your slow healing. Your GP can check your levels and give you booster vitamins and minerals if they are low. I assume you are taking Creon with your food.

Hope you have a quick recovery then on to the chemo course.

John

[Pete12]

Hi John. Thanks for your advice and your support. It is nice to be able to "chat" with people who understand this awful disease. My GP is very good, although not an "expert" regarding pc. My GP did a blood test approx five weeks ago as I felt quite lightheaded most of the time, the test showed that my blood count was quite low and he put me on iron tablets, the light headedness has improved a little. He is going to carry out a fasting blood test tomorrow, I think this is to check for diabetis and vitamin deficiency. I think he is aware that I may not be absorbing things very well as when I mentioned to him that I was taking vitamin B12 tablets he said that my body may not be able to absorb them. At my last appointment with the Consultant and specialist nurse it was discovered I had lost a further 6 pounds although my appetite is very good (I can eat for England), he said that if I had lost any further weight on my next appointment (21st October) he would look at putting me on Creon. It just seems to take such a long time for anything to happen.

Regards

Pete

Edited October 6, 2014 by Pete12

[Pete12]

Sorry. That last post should have been to John

Apologies John.

Pete

[knutsford4]

Hi pete, my husband went through the Whipples for Bile Duct Cancer, Oct 2012, he had all the compilations they explained to us, had a further 3 ops ( wound opened every time ) and his 4th was an angeygram (sorry about the spelling) they told him 25-30 mins it would last, he lay on a hard table for 4 hours and 45 mins before they could fix the bleed in his stomach, which lead to his bottom covered in blisters, sorry for me rambling on, but after his third op he was left with an opening at the top of his stomach for about 5 weeks nurses came for 3 days to dress it, then said he could do it himself and for him to get the dressing of his GP,

He had 2 CT scans in 2013 that were clear but his back pain in Dec 2013 led to a CT in Jan 2014 and cancer was back, not good they said a few months (he's 48) 9months later he is doing really good living life to the full loves playing his poker sometimes playing 3/4 times a week all night,

So stay strong and positive Pete, and I hope you stay well at some stage we will beat this awful decease xx

Sorry my name is Martine lol

[Pete12]

Hi Martine.

Thank you for your message of support. It sounds like your husband has certainly been "through the mill". I'm glad to hear he is doing so well, It gives us all inspiration. I have my dressing changed every day by the GP practice nurse, and District nurse at weekends, so it sounds like your husband did not receive the care he should of had.

Has your husband had any Chemotherapy, and if so how long did it last? I have been told I need Chemo but they will not start it until the wound has healed completely.

Thanks once again for your reply Martine, it's comforting to know there is support out there. Also pass my best wishes onto your husband.

Pete

[knutsford4]

Hi pete

Yes he had 13 months of chemo, they had to wait for his wound to heal ( like yourself), they started his chemo January 2013, he had it in tablet form, 2 weeks on 1 week off, finished it in August after his scan which was clear, they just kept a close eye on him, he then took a pain in his back in December 2013 after a scan, they called us in to see them in January told us it was terminal, it was wrapped around the main artery that feeds the small intestine, give him a few months, then back on chemo in February interveinous this time, again 2 weeks on 1 off, he finished it on 6th August this year, his scan last week was the same as the June one, which is great as no reoccurrence, they are scanning him again on 3rd November, but he. is in pain again with his back, not sure if it's possible for tumors to grow quick enought in 5 weeks to give pain, but he is so positive, he comforts everyone, when we have breakdowns, he has accepted what is ahead of him and is more concerned about me coping without him, even though this awful decease will proberly take him within the next year, we have been extremely lucky, we have had an amazing 2 years, lived everyday like it was his last (even though we thought the docs had got it all) thank god we did, we are very open with our kids they are 26,23,20,15 and I think that helps, Allen has not had one dark moment or shed a single tear, and he looks the picture of health, for that I thank god, cos it's easier for me and the kids to cope,

Sorry for rambling but it's great to release it all here, cos your always afraid of people getting fed up with hearing you talking, that's why this site is so good

Martine xx

[Pete12]

Thanks Martine for the info regarding chemo. It sounds like Allen is a real fighter. I hope Allen's next scan in November shows no further growth. My best wishes to both of you.

Kind regards

Pete xx

[Pete12]

Just a quick update. I attended an appointment today with the Oncologist. This was arranged by my Consultant to discuss Chemo, as although he says that all the cancer was removed (Whipple 6th June) I would benefit from a course of chemo just to make sure. Unfortunately after my surgery I developed a nasty infection which resulted in my wound being "unclipped" and the surgeon thought it best to allow it to heal without closing it again. Although it is now over 4 months since the op the wound has still not healed and it will be at least another 2 months before it does. The Oncologist said that as the wound is still "open" and also that it has been over 4 months since my op, chemo is out of the question even when the wound has healed. Obviously this is very concerning. Has anyone else experienced this.

Thanks

Pete

[nikkis]

Sorry to hear this Pete, how stressful for you. I remember the time frame post surgery for chemo was something that Jeni, one of the nurses here mentioned when my husband was waiting for his wound to heal, so it's probably worth giving them a ring.

Nikki

[PCUK Nurse Jeni]

Hi Pete,

12 weeks is the usual maximum window for post-op chemo. The benefit dwindles after this, and would certainly not be advisable to have chemo with an open wound.

Unfortunately with wounds, you just have to give them time to heal from the inside out, or you will run into future problems.

Hope this helps,

Jeni, Support Nurse.

[Pete12]

Thanks Nikki and Jeni for the info. I guess it's just a case of waiting with fingers crossed.I did have a CA19-9 blood test while I was at the Oncology dept, I have a further appointment with my Consultant on Tuesday 21st Oct, so should get the result then. Not fully sure what a CA19-9 is for?

Pete x

[J_T]

Hope all goes well at your forthcoming meeting Pete. How annoying the wound is taking so long to heal. Hopefully they got rid of the blighter there and then!

Julia x

[sandraW]

Hi Pete,

As I understand it, its a marker that can show lots of false positives and negatives, but it measures the secretions? from the tumours. So if for instance in my husbands case he stops treatment the CA 19.9 rises, but then when the treatment kicks in the CA 19.9 numbers fall again. Everyone seems very different in their personal numbers some are in the 10's some in the 100's some in the 1,000's some in the 10,000 and even the 100,000, but the main thing is wether they go down with treatment. Some people with very advanced PC, numbers don't go up at all, I hope that helps, take care sandrax

Edited October 18, 2014 by sandraW

[Pete12]

Thanks Julia for the message. As I say, it's just a case of fingers crossed and hope it is all gone and doesn't return.

Pete x

Thank you Sandra for the info. I assume that as my tumour was removed, they are just monitoring the situation. My best wishes for you and your husband.

Pete x

[Pete12]

Just a quick update....Attended my latest appointment with the consultant yesterday, and saw one of the team, not the man himself, although she was very nice. I asked if it would be useful to see the tissue viability team regarding my open wound that seems to be taking forever to heal. She said that there was little they could do, and it's just a case of waiting. She said that the result of my CA 19-9 blood test was 20. I think that this is within "normal" limits, is that the case?

Also, I had a swab taken of my wound by the practice nurse last Friday, and I received a telephone call from her today at 4.30pm saying that she had just received the result, which indicates I have an infection in the wound. I have been prescribed a seven day course of antibiotics (Flucloxacillin 500mg) but as I had such a "rough" time with the first infection, I think it might be a good idea to contact the Specialist Nurse at the hospital for further advice.

Hope you are all keeping well (as can be).

Best wishes

Pete