Forum Replies Created
Glad to hear your story as well. There is so many of us …… I am anxiously awaiting medical literature to be updated… I think we will be surprised to see the change. I too like to live in the moment and I think what if this is my last…………. It often makes me irresponsible… in others view but I know that I am creating and capturing moments in time with my family and friends that cannot be replaced.
Hang in there… Wish you too many more years one day at a time.
Thanks for sharing… I love hearing the words 11 years and I cheated this disease. It gives me hope to keep moving. I think all of us have come up with different ways to keep the demon at bay but I want to say I agree with your suggestions and the very best one is to make sure we are sleeping well and to indulge in a new mattress ….. I too had a new mattress purchased when I came home from the hospital last year … unfortunately I couldn’t sleep well in this top notch one hell of a mattress because I sank to far in the tempurpedic part…. so I have slept on several different beds since then in my house… I have just purchased the ” new mattress” to get me back in my own room….. so with all of this run on sentence I am whole heartedly agree that a mattress is key to recovery
I hope you keep adding the years one year at a time!!!
MichelleSeptember 3, 2016 at 10:48 pm in reply to: pet peeves of cancer.the small stuff i hate. go ahead and add your own #38673
I hate that this cancer took my ability to walk normally.
I hate having to use a wheelchair for ” walking around the mall” or ” doing the theme park”.
I hate that I can never find the right word…. ever…. that my brain only functions at half the capacity since starting chemo.
I hate that my left leg swells like a perioge when it is hot or I have walked too much.
I hate the face that others make when I tell them I have cancer.
I hate hot flashes.
I hate that I take a small pharmacy to control my symptoms.
What do u hate!!Please respond… I think it will be comforting to see what you guys are struggling with….that i am not alone!
I hate that I have cancer!!!August 17, 2016 at 5:23 am in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90233
I also would like to add…. I was unaware that you were a physician so please forgive repetitive information.
I also reviewed your entire thread here and had a few thoughts….bostonguy…..
1) how is here fatigue? for me when I am tired and overwhelmed emotionally or physically it seems my nausea is off the charts? Is she able to go throughout her day or has her activities been affected by the cancer?
2) I can’t say enough that my physical state is really affected by my emotional wellbeing. Could your mother be thinking more about the severity of our diagnosis ( not well cured cancer) in relation to a new grand baby being born? The ebb and flow of emotions is really unbelievable. This could really be a new happy but stressful event for her that may be contributing to the nausea.
3) Is there something maybe in her history/ros that might be getting overlooked. I know that it is so tremendously hard for me to remain in the patient corner when things get more difficult for me… I try very hard not to try and lead my team. Lucky for me I have a great doc who knows me better than myself …lol. Maybe go back to how she is describing the nausea…. or keep a journal to identify if there are any common factors associated with it throughout the day. This could be really helpful.
4) TD is so uncommon…. I know it is a worry with the reglan but you were using olanzapine which causes tons of TD and she never suffered with that side effect. GEM/CIS are great for causing terrible side effects. I am sure you have thought about an emptying study and upper endoscopy.
5) Glad to hear she is not in pain especially in her abdomen. I had to have some pain management due to the cancer returning in L5. really did a number on my leg. I have kept a low dose of narcotic at night .. I do not know her disease burden but sounds like she has been so lucky in that respect
6) WOW are those markers high but acceptable… I am fascinated at the range… there are so many folks like me that their markers never got above 150 and then there are others that have them in the thousands. Clearly though she has some inflammation somewhere… and yes I am glad for the gold standard of imaging…
7) Have you joined the FACEBOOK GROUP for patients on the AG-120 . There is a ton of first hand info on that page. I had considered applying to the trial but keeping up with the postings I have since reconsidered. Here is the site https://www.facebook.com/groups/753847751426566/
The first job I had as an NP was for a neurology practice and marinol was used frequently for severe MS patients. I would think remembering those patients that the CBD oil would work better than the synthetic… Would get your mother maybe to try both and let you know … she might like getting a choice for once… lol This cancer doesn’t allow for tons of choices.
9) I wish I had some great suggestion to help you and your mother. I am sure you will find something…… Also good luck on the rest of the trial. I am very interested to hear how it goes.
Lastly congratulations on your new baby. That will certainly make your mother feel better…..
MichelleAugust 16, 2016 at 9:57 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90230
I have some experience with your issues so let me begin :
First let me say I am a Nurse Practitioner and a patient. This gives me a very unusual perspective at times so please forgive anything that sounds like medical advice. I will only share my experience.
So I have a ton of experience with the olanzapine. I work with inpatient psychiatric patients and that is a commonly used antipsychotic. It most definitely will cause the QT prolongation and a first degree AV block. It also causes tons of weight gain and eventually metabolic syndrome. I am sure the appetite increase was an added bonus in consideration of a cancer patient. My experience with olanzapine ( zyprexa) is that the QT prolongation really becomes an issue when there are too many other meds that are contributory also. Either way it is important to stop the olanzapine.
As far as help as other options I would recommend maybe going with Reglanl ( again the possible QT side effect) but would help with GI motility if she is on any type of narcotic and perhaps has just developed some gastropareisis( nerve damage to the GI tract). I had a similar situation as a side effect of oxcaliplatin. I am doing much better now but was really feeling awful. I also added a proton pump inhibitor such as prilosec or protonix, I too was prescribed ativan and it did work REALLY great so if it still works I suggest using it but maybe at a lesser dose with some of the other GI meds I mentioned above.
I too was give a sample of CBD oil from my brother. He live is a state where it is legal. I tried it once for sleep and was not over impressed but can see how it would help nausea. If it works then I too agree that you should use what you have. It is important for her to get proper nutrition However you can help her system accomplish that is the bottom line. I would also make sure that simple things like thrush, reflux, ulcer, and so on are not overlooked. Having cancer and going through these treatments are very stressful. This too may be contributing to the nausea. I would highly recommend that you let a clinical pharmacist review your meds to see if there is any other contributing medications that maybe could be removed and then others added in place. I find polypharmacy a big contributor in how I feel and a big issue with some of my patients. Sometimes less is more.
As far as alternative treatments go I have done both acupuncture and Reikke in the past for overall well being. I do recommend both therapies and think that this may provide some relief if your mother is open to it.
Not sure if this was helpful but I wanted to share my personal experience with nausea and what I have known to work or not work.
Good luck and keep me posted.
Michelle Pratt FNP-C
Good afternoon All!
I have intrahepatic CC and I am a nurse practitioner.
First I couldn’t agree more to what Karen has shared in regard to ascites, pathophysiology and treatment.
I do not have problems with ascites at this time but I have over the past year developed a problem with unilateral lower leg swelling and generalized edema after my chemo infusions. I have taken a diuretic combination consisting of lasix and spirolactone. It has helped tremendously when I am swollen overall…..
I have used that combination( with guidance of GI doctors) in my patients who are struggling with ascites related to cirrhosis or Hepatacellular Carcinoma with success.
In respect to albumin transfusions I had administered many while working as an ICU nurse. All of these treatments of course were at the discretion of the treating provider.
In relation to my left lower leg and foot I have discovered that complete rest ( off my foot) combined with lymphatic massage has been extremely successful. I will admit that I have watched YOU TUBE videos for “do your self “lymphatic massage to assess if this would be helpful and it absolutely did. My plan is to see a professional certified in lymphatic massage. For this type of edema compression hose are helpful as long as there is no risk of swelling due to DVT or open weeping areas. Once you have an open/ weeping/ or ulcerated area due to swelling it is important to see a specialist trained in wound care for proper healing. A healthy diet is also helpful this includes watching salt intake.
From a patient perspective this type of swelling is terribly painful and makes walking difficult. It is important to keep walking. Sitting with legs hanging down in a chair only makes the situation worse. If you notice any redness or warmth on the affected area/ limb it is important to seek medical care.
THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER.
In addition the Department of Veterans Affairs has the VA choice program dependent on your circumstances.
Many of the VA hospitals coordinate with community hospice and palliative care services even if the hospital does not provide the service. I have included the links for the general palliative care web page and also the one for respite service.
I want to introduce myself. My name is Michelle Pratt. I am a now 5 year survivor of intrahepatic cholangiocarcinoma. I was first diagnosed around July 4th 2011. I had a few stomach pains and I had a coworker give me an examine at work and she followed up with a recommendation for ultrasound. Well After writhing in agony all night I finally felt better in the am but decided to go to my family practitioner just in case there was something wrong. I was driving to New Jersey with my two children who were toddlers at the time and I just knew I would have another ” gallbladder attack” when I was stuck in the Washington DC holiday traffic….lol. Instead my provider saw me the day before I was going. She insisted that I get an ultrasound just to be safe…… wouldn’t you know it….. a large intrahepatic tumor was found on the imaging. from there I was referred to a go doc for a stat endoscopy/colonoscopy and a diagnostic mammogram. Those too came back negative. The GI doctor sat on the side of my bed and said he wasn’t sure what was in my liver but he felt that I should see a surgeon right away. He thought that I had an adenoma related to long term birth control pill use. Sure enough my liver was biopsied and the staining resulted in cholangiocarcinoma. From there I went for cardiac clearance, a chemo embolization and then half of my liver resected. I had a pretty average recovery and was getting ready to go back to work however my oncologist decided that I should have 6-7 weeks of radiation and oral chemo before i actually set foot back on campus.
I truly thought that I was finished with cancer…well cancer had a different idea….
Last summer. I was diagnosed with a recurrence of my cancer. I had been having back trouble for several months and was basically told that I was overweight and should go to physical therapy. On one visit to the Emergency Department I had lost my temper and demanded a MRI of my back before I would leave…. I also decided to throw my Nurse Practitioner credentials around to ensure that I was taken seriously. As it turned out my back pain had nothing to due with my weight but was instead a large tumor that was consuming my L5 vertebra. In addition to the tumor in my spine several small tumors were found in my lungs. I was admitted to the hospital to a neurosurgery service and no one wanted to talk to me about my cancer. After several days of drugs and steroids I finally started feeling better and firmly requested that my oncologist be called. Apparently the one on call that week told my family I had just a few ” months” to live. I had no idea he had said this….. it took months for my husband to get over that news….. and to see it was inaccurate. My oncologist finally showed up ( we had just had my 4 yr check up and decided that I didn’t need but one more scan). The only thing I asked him was ” can you fix this and keep me alive until something better comes along.” Tearfully he said yes and that was it….. my radiation oncologist came by within the hour and by the next day I was discharged and getting ready for radiation to my back and starting chemo.
Fast forward to December 2015 I learned about the Cholangiocarcinoma foundation and that there was a conference held in Salt Lake City in February. I had a strong feeling that I needed to attend the conference but I was out of funds as I had been living off of savings and donated leave. My children gave me the idea to try Go Fund Me and try to get the money I needed for my trip. I was overwhelmed with my family and friends generosity….. My best friend/colleague and I were able to attend due to the money that was donated. At that conference my life took another turn for the best. I met an amazing room of survivors and medical professionals who were passionate and dedicated to help fight this disease. I learned about Facebook groups that were formed and joined. I have found overwhelming support and friendship from these groups. In addition I learned that the foundation had a Nursing Advisory Board. I then interviewed for a position as I felt that I held a unique position as a patient and Nurse Practitioner. After a few meetings I learned more about the discussion group and viola… here I am.
I did not join any groups or get involved in any type of cancer community the first go round of cancer. This time I had a strong desire to share my story of hope ( I am now a five year survivor ) and try to advocate and educate the community about this terrible cancer. I am determined to see updated data and information reflecting the change in the face of this cancer and that there are survivors… I want someone who is newly diagnosed to know there is hope, current research and treatments and most of all SURVIVORS.
It is with great pleasure that I now join the online discussion community and I am looking forward to sharing my experience and learning so much from everyone else.!!!