What type of chemo? How old is your husband?
With my husband - he was trying to lose weight (starting in December of 2009) to help control his diabetes and was very successful; however, the weight just continued to come off and he was not doing anything more to cause this weight loss. In addition, his blood sugar spiked to 450-520. Of course, this prompted a trip to the doctor (Cleveland Clinic) – this was in March of 2010 and this is when it all began. The doctor ordered some blood work, an ultrasound and then a CT scan. What they saw was some type of obstruction but it was not diagnosed yet as cancer. The blood work showed that his body was undergoing some type of trauma, but again – nothing conclusive. At this point it was determined that he was to have two procedures – one was an endoscopy and the other was an ERCP. However, he became jaundiced a few days before the procedure so it was determined, on the day of the procedure, to only do the ERCP so that they could determine what was causing the blockage and fix it. Again – not yet conclusive for cancer (although suspect) they did determine his pancreas had atrophied and both the bile duct as well as the pancreatic duct had strictured. At this point, they were able to put two stents in both ducts to help correct the issue with jaundice.
After talking with various doctors and surgeons, they would need to do a procedure called the whipple to confirm the prognosis and to fix it. He had his whipple on 8/9/2010. They removed approximately 20% of his pancreas, some lymph nodes, the common bile duct, the pancreatic duct, the gall bladder and only a small part of his stomach and the duodenum. My husband was 62 years old and came through the 9.5 hour robotic whipple surgery with absolutely no complications. A month after the procedure – he was able to eat most everything he was eating before the procedure, started exercising more, golfing and he went back to work. Although the entire tumor was resected with negative margins and it had not YET metastasized to other organs, it did metastasize to his lymph nodes. Of the 20 nodes they removed, 9 showed signs of cancer.
He has been through chemo with gemcitabine. He then went through radiation/chemo combination (radiation daily with chemo 1 day / week for 6 weeks). He was doing pretty well with this up until the last week. He started to experience fatigue, weight loss (just not very hungry), stomach discomfort. We were told this is pretty normal for this treatment. After this, he had a break of about 3 weeks then started another 3 cycles of chemo. He did pretty well with this last 3 cycles (he did experience a pattern of 1 week on – then the 2ndweek he could not get his chemo due to low numbers (white blood cell count too low) but then he proceeded fine for week 2 and 3. He made it through all the “standard treatments” with minimal side effects – for this we are so very thankful. One of the things my husband has to concern himself with is his diabetes. Prior to the cancer, he was Type II diabetic – after the surgery – he become Type I diabetic (called a brittle diabetic) and takes insulin 4 times/day. His blood sugar usually does not go high but does, on occasion, go low – so we have to be very careful. Again – fortunately for my husband – he feels the signs coming on (feels very warm, vision gets distorted) and he is able to adjust by taking some candy, some boost or ensure, milk, etc. – things that will bring his blood sugar back up to par. This is still very scary but again – it has become a part of our life and we adjust – it is SO much better than the alternative.
We were scheduled to go to Johns Hopkins for a clinical trial on July 6, 2011. However, they needed tests to prove he was still cancer free. He got all the tests done and everything looked great (numbers were good, CA19-9 was 14, he was feeling good, at a good weight) except the CT scan showed that a nodule (in his right lung) that was previously 5 cm had grown to 8 cm and a new 10 cm nodule was also located. We were still pretty confident that it was just an amoeba or a lesion from a past infection but the only way we could determine this for certain was to get a wedge cut of the nodules and have them biopsied. The surgery was successful and there were no real complications (other than soreness from the operation and some itchiness from the anesthesia); however, the nodules were diagnosed as metastasized pancreatic cancer. So a new chemo regimen was started. He started with folfox for 2 treatments then went to folfirinox for 12 treatments – it really started to affect him (did not want to eat, fatigued and nauseous all the time) so he went on folfox for last two treatments – then got a scan. This treatment was no longer working – there was some growth in the lungs – so he is now on GAX (just finished treatment 7) and is doing relatively well with it – except he is losing all of his hair (all over body) but otherwise – doing well. We will go for another scan in February – and take it from there.
This is our new normal – it is very scary at first but considering the alternative – you adjust. We take every day as a new day and a blessing – we plan for vacations and enjoy time with family and friends. We have not stopped living – my husband has cancer but cancer does not have him.
My husband did not feel like he had cancer either – that is why this is such a silent disease – you really don’t know you have it until it starts to progress.
Good luck to you and I pray that your husband gets through the chemo with much success. Try to remember that everyone is different and will react differently to every stage of this disease. There is another blog that I joined with people who have MUCH experience with this cancer – whenever you have a question – everyone is wonderful and will give you their advice or opinion based on their experience. Again – the thing about this cancer is that everyone reacts differently. Some people have surpassed 1 year – 5 years – 10 years – it just all depends on God’s will. Here is the name web site for Johns Hopkins: http://www.path.jhu.edu/pancreas/ and then in the upper right hand corner of the screen click on Discussion Forum.
My husband is still here -- 28 months past dx -- we are blessed and I pray that you and your husband are blessed as well.
Make sure your husband drinks LOTS of water during the chemo as dehydration can become an issue. Also make sure he eats as much as possible -- even if it is nibbling through the day. He may become nauseaous or maybe not -- but he still needs to eat. You will find that his taste buds will change -- so things he LOVED at one time -- he may no longer be able to stomach. But that is okay -- just keep trying to feed him whatever he wants to eat.
With the chemo infusions--make sure he gets anti-nausea medication and make sure the doc sends you home with anti nausea medications. Also -- look for signs of depression. Depression can be a part of this disease. If you see he is getting depressed -- many many people take depression medications - it really helps.
Please feel free to come over to the Hopkins Discussion Forum -- you will find lots of answers there - and you can even do a search on past posts to look for specific topics.
I hope this helped. Never give up hope!!