Treatment, symptoms & side effects
A forum to focus on treatment related issues, symptoms and side effects from treatment.
220 topics in this forum
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- 7 replies
- 23.6k views
Hi, I've been suffering from a sore and very dry mouth (Sometimes I have difficulty producing much saliva. I was wondering if anyone had any advice on how to combat this? Thanks
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Abraxane in England - any update?
by WifeampMum- 2 replies
- 15.9k views
Morning, A query for PCUK: Is there any update regarding the CDF's 2015 delisting of Abraxane for patients in England. I believe that NICE is meant to be reviewing this disgraceful situation? Thanks W&M
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Questions about pancreatic cancer? Contact our Support Line
by Support Team- 4 replies
- 68.1k views
Pancreatic Cancer UK - Support Line Pancreatic Cancer UK runs a confidential information and support line for anyone affected by pancreatic cancer. Our Specialist Nurses can provide individual specialist information about pancreatic cancer, treatment options and managing symptoms and side effects. We can also listen to your concerns and provide support. You can contact the service by emailing support@pancreaticcancer.org.uk or call our freephone number 0808 801 0707. The service is available Monday- Friday 10am - 4pm. To find out more visit http://www.pancreaticcancer.org.uk/information-and-support/get-support/support-line/ The Support and Information section of our…
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Please help me, a newcommer
by violette28- 9 replies
- 21.7k views
Please help me with some explanations and advice! My dad got diagnosed with a growth on the pancreas 3 weeks ago, and had surgery 5 days ago. The surgery was successful, but very heavy. They cut a lot of his organs --part of the stomach, a bit of a vein, intestines pancreas, gall bladder, spleen. They told us that everything is cut out, and that there are no visible metastases elsewhere in the body. We are waiting for results from the biopsy and the doctors say chemotherapy will be needed. We do not have a real access to his doctor, because he is operated in a military hospital so we do not really understand everything that goes on. We only know he is in a lot of pain …
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Thrush.
by Veema- 7 replies
- 20.3k views
So...just putting this out there and I know I'm probably just clutching at straws, but my husband has been to the doctors today with a sore throat...turns out it's thrush...he's got some tablets and whilst reading the leaflet that came with them, I come across something that states you can have thrush (candida) in the lungs...so I now google this and there are some CT scans on google that show lungs with candida and they have multiple small spots!!! Is this something worth mentioning to the oncologist or am I being really ridiculous???
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Onivyde
by WifeampMum- 3 replies
- 17k views
Hi all A new second line treatment for Stage 4 PC which was approved for use in the USA last year has been given the seal of approval by a top European scientific committee. http://pharmaphorum.com/news/shires-onivyde-recommended-by-eu-regulators/ Europe’s top scientific committee (CHMP) has recommended Shire’s Onivyde (irinotecan pegylated liposomal formulation) for advanced pancreatic cancer. The article goes on to say: "....there is an urgent need for new treatments for pancreatic cancer. In England, patients will hope that Shire’s drug will be deemed as cost-effective by NICE, after a long-running saga around access to Celgene’s Abraxane (nab-paclitaxe…
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Gemcitabine suggested...what to expect
by louisej- 13 replies
- 27.1k views
Hi This morning my mother in law (stage 4 PC with Metastatic liver) has been to see her Oncologist who has suggested Gemcitabine chemo over 6 sessions, however, contrary to most of what i have read about this drug, they are only suggesting 2 weeks treatment then a weeks break rather than 3 weeks. Does anyone know why this could be please? I wonder if they feel she may not be strong enough for the 3 weeks? My own mother had chemo for Vaginal cancer and sadly only managed 2 sessions before it became apparent that her body was unable to cope with it and passed soon after. Although i appreciate this will be a different type of chemo, i obviously have this in the bac…
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Creon enzymes
by suef- 15 replies
- 35.3k views
My wonderful new consultant reassured me that I am using my enzymes correctly so I want to share this with the group. I currently take 15-20 Creon 25000 a day, though he has advised me to move to Creon 40000 so I don't have to carry so many pills around! The enzymes have to be present in your digestive system before you start eating, so I usually take a couple a few minutes before I start my meal then continue taking them during the meal. The number I take depends on the food. If it is high fat I take more, if it is low fat I take fewer. Typically I take about 6 per meal and 2 for a snack. It is not possible to overdose. The enzymes we take via Creon etc repres…
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Chemotherapy dose reduction protocols
by WifeampMum- 8 replies
- 20.3k views
Hi all This is a query for the wonderful PCUK nurses but I thought I'd post it here in case the answer is of wider interest. As I mentioned on another thread today, my husband is on a regime of 6 months of Gemcitabine and it has been lowering his neutrophils and platelets. They were around 0.8 (neutrophils) and 75 (platelets) on day 14 of the first 3 cycles. The protocol that his oncologist has been following says that if the numbers are under 1 (neutrophils) or under 100 (platelets) treatment should be halted until the numbers rise. This has resulted in him missing Day 15 of the first 2 cycles. We had a second opinion yesterday at another London hospital (differ…
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New Treatments 1 2
by Dandygal76- 37 replies
- 58.5k views
PCUK Nurses... is it me or am I the only one that does not see the trial drugs translate into treatment options? No one comes on here saying I am on Gem and abx or Forifirnox plus the latest new treatment? For instance.. http://www.univadis.co.uk/viewarticle/metastatic-pancreatic-cancer-second-line-therapy-extends-survival-after-nab-paclitaxel-gemcitabine-421996 I would just like to know if anything is actually filtering through or will filter through to the front line. This is not me being defeatist, but it is interesting nothing seems to come out in the wash in terms of new treatments. What is available outside of the chemo norm (is anything?).. drug wise (we have…
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Cause for optimism? - Lancet editorial
by WifeampMum- 3 replies
- 15.7k views
'Optimism' and 'pancreatic cancer' are uncommon bedfellows, but the editorial in the latest issue of Lancet Oncology is headed "Pancreatic Cancer: Cause for Optimism?" It recaps recent research findings that could lead to treatment breakthroughs. Most have previously been mentioned in this forum. Unfortunately I'm not able to post a link at the moment due to copyright. To my mind the most interesting finding reported on is the 44% 5 year overall survival of patients given the drug S-1 in a Japanese trial. S-1 is used predominantly in Japan (apparently it's poorly tolerated by westerners). I love the final sentence of the editorial: "Although many challenges lie…
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- 3 replies
- 16.4k views
Another good news story, details on the PCUK website: "Combination therapy after surgery shows improved survival outcomes" http://www.pancreaticcancer.org.uk/latest-news/2016/june/combination-therapy-after-surgery-shows-improved-survival-outcomes/ My hubby has an appointment with his oncologist on Friday and we will ask for him to be switched to this regime...he is currently on Gemcitabine alone so this is brilliant timing for us. W&M xx
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Research breakthrough may lead to new PC treatments
by WifeampMum- 3 replies
- 15.6k views
Some exciting research news was published yesterday regarding the protein CXCR2's role in PC and how it may be targeted in the future for new PC treatments. There's an article about it on the Cancer Research UK site here: "Scientists tear down pancreatic cancers defences" http://www.cancerresearchuk.org/about-us/cancer-news/press-release/2016-06-02-scientists-tear-down-pancreatic-cancers-defences And a more technical article here: "Let the right ones in – boosting immunotherapy for pancreatic cancer" http://scienceblog.cancerresearchuk.org/2016/06/02/let-the-right-ones-in-boosting-immunotherapy-for-pancreatic-cancer/ W&M xx
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Good news for borderline resectable patients
by WifeampMum- 6 replies
- 19.4k views
For those with a recent diagnosis of 'borderline resectable', some very positive news has just come out of the U.S. Mayo Clinic ...patients who are treated with chemotherapy, radiation therapy then aggressive surgery are on average living 4 times longer than previously (median overall survival 4 years compared to median os of 1 year). Further details and a video at this link: http://newsnetwork.mayoclinic.org/discussion/chemo-radiation-surgery-combo-boosts-survival-for-pancreatic-cancer-patients-with-veins-involved/
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- 4 replies
- 15.5k views
I write this in support of the comments made by the PCUK Support Team on 29th April - Pancreatic Cancer UK Discussion Forum and Support Line Forum - regarding forum members posting 'medical advice'. http://forum.pancreaticcancer.org.uk/viewtopic.php?f=8&t=1758 I believe that these discussion boards are a great source of support for many people, myself included. I fully agree with the intention that they be used for emotional support and to share experience. By way of background, I was diagnosed with PC in April 2015 and had Whipple in May followed by chemo. I have just had a CT scan and a review with my Consultant Surgeon and Oncologist and told that I have a …
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Surgical Removal of Tumour
by Hobbs- 13 replies
- 26.9k views
Dear Forum Members/Nurses, I do not know where to begin; but first and foremost, I really feel the urge to thank everyone here - especially the nurses for their kindness towards me. My mother was diagnosed with Pancreatic Cancer. Here's a brief historic overview before I ask my questions. OK - I'm not a patient, but I can tell you, this has been an insane rollercoster ride for us; mentally, physically, spiritually and emotionally. Patient Profile: my beautiful mother: a beautiful, silver haired 73 year old lady. 165cm, 65KG. L2/L3 diabetic. Generally healthy. Home carer to my father. Kindest, loveliest lady you could ever wish to meet. * Dec. 2015 she fee…
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New PC treatment on the horizon
by WifeampMum- 1 reply
- 14.2k views
Hi all Some interesting and promising news published today! Researchers at MIT have spent the last 3 years developing an implantable device for targeting PC tumours with chemotherapy, and results so far are encouraging. Currently it's only been tested in mice, but human trials are planned soon. The press release is at this link: http://news.mit.edu/2016/implantable-device-targets-pancreatic-cancer-0414 Best wishes W&M
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Fatigue after Gemcitabine
by Kevin- 5 replies
- 19.8k views
I would like to share my experience of adjuvant chemotherapy with Gemcitabine and hear about how it has affected other people following similar treatment. Specifically fatigue. Background: • 53 years old, fit and active prior to diagnosis. • Sudden onset of jaundice and diagnosed with PC end of April 2015. • Successful surgery end of May 2015 – clear margins but 60% positive lymph nodes. • Adjuvant chemo (Gemcitabine) started in July 2015, ended Nov 2015. • Severe fatigue during chemo. Minor improvement after chemo ended but plateaued and still very poor since December. I appreciate that everyone is different. However, apart from the general information abo…
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White Blood Cell Count Low - advice for a newbie?
by Dandygal76- 9 replies
- 20.2k views
Hi My dad had his first round of chemo last week and went for a blood test today before his next chemo tomorrow. His level was 1.4 and they are saying they may either have to lower the dose, give him injections to increase the white blood cells or leave chemo for a week. Does anyone have experience of this because it seems to have fallen a lot over just 6 days and we are disappointed that he may already have to skip a treatment and that such a negative effect is occurring so soon. Your experience and advice in this would be really appreciated. Thanks L
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- 9 replies
- 14.9k views
Hi I am new to this forum. Sorry for the long ramble... I feel the need to ramble in the context of the question. My dad is 62 years old and was diagnosed with Pancreatic cancer at the beginning of January 2016. At first they said it looked operable and so he went for more scans that culminated into a PET scan where they said it had spread to his bones - tiniest amount. This was on the 5th February (please bear in mind we skipped a 2 week MRI queue by going private so this date would have been 2 weeks later). Then we had to wait on the referral from Oxford to Milton Keynes for chemo to start. This letter came 2 weeks later for urgent (their words) chemo to …
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any information or experiences very welcome
by Helliemo- 18 replies
- 26.7k views
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Newspaper article
by sandraW- 8 replies
- 15.3k views
I hope this copies ok its interesting sandrax http://www.bbc.co.uk/news/health-35650171 Major insight into killer pancreatic cancer - BBC News http://www.bbc.co.uk Pancreatic cancer is at least four separate diseases each with a different cause and needing a different treatment, scientists have discovered.
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Maintenance chemo
by WifeampMum- 5 replies
- 12.9k views
Hi everyone I'm posting this in response to Jeni's comment on another thread today, that there's no evidence on the efficacy of maintenance chemo. From my limited reading on this topic I think there may be growing evidence that maintenance chemo works for some. For example, 3 articles (published 2015) about maintenance chemo for stage 4 disease: http://hwmaint.meeting.ascopubs.org/cgi/content/abstract/33/15_suppl/4120 http://www.hindawi.com/journals/crionm/2015/659624/abs/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408451/ And here's a 2014 article about maintenance chemo for resected PC: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171974/
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Heidelberg and UK treatment
by Ruthus- 1 reply
- 10k views
I have read threads from 2013 related to Heindelberg in Germany being advanced in the treatment of pancreatic cancer and being more willing to operate on what have been deemed inoperable tumours in the UK. However have also heard controversial stories that the success rates may not be great (I don't know if this is correct) and is very expensive. I haven't found any recent information and am wondering is Heindleberg still seen as being advanced than UK in terms of considering surgery or have things improved in certain UK hospitals in terms of considering surgery? I would be interested if anyone knows and what would possibly be attempted at Heindleberg which would not in U…
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Folfirinox minus Irinotecan
by Marieb- 0 replies
- 9.6k views
Hi all Wondering if anyone has any experience of getting Folfirinox minus Irinotecan. Since the beginning of my chemo (have had 5 2 week cycles) I have had issues which my Oncologist is confident are adverse reactions to Irinotecan. These start in the clinic when they administer it present themselves as flu like systems (on one occasion), D&V and incredibly painful stomach spasms, nausea etc. They tried flowing down the administration from a half hour to 1 hour with multiple Atripine injections both in the clinic and as back up when going home . As I am tolerating the other drugs well they have decided that the best course of action is to remove this drug fr…