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Real Stories of Pancreatic Cancer

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Patient 1: Female (Canada)

This is my first entry. A friend directed me to a related site today, and somehow I ended up here. I was given the pancreatic cancer verdict the end of last year – after months of testing and being told ‘whatever it is, it isn’t cancer’. Ha! So much for the – it isn’t cancer theory. I was referred to a world class surgeon in Toronto early this year who was able to do a Whipple procedure, removing about a third of my pancreas.

Initially he thought he got it all. However subsequent scans revealed the original cancer had metastasized into the liver. So then it was off for chemo. What a nightmare. Again, an excellent oncologist at an excellent facility. I was put on the 5-FU regime (how appropriate is that name!) from May-Nov. Twelve treatments in total. Nearly killed me. I don’t think I have ever felt as ill as I did during the 2 weeks between treatments. Just began to feel normal when it was time to begin all over again. But, by the end of the year my tumors had reduced considerably, and my oncologist considered me his poster girl. We all knew the reality of pancreatic cancer.

However, by the end of February the party was over. The tumors were back. So another hit of 5-FU. This time the drug concoction plus the accompanying steroids, triggered bleeding abdominal ulcers. It was decided to discontinue 5-FU. I am now receiving Gemcitabine, a less aggressive treatment. I feel I’ve been given a reprieve chemo-wise, but only time will tell if this will work for me or not.

I would be very interested to hear from anyone with pancreatic cancer. I am blessed with a wonderfully supportive husband, family and friends. Life is good. But I hate this disease with a passion. Acceptance of it is not in my vocabulary.

 

Patient 2: Female (USA)

Just found this site and today is my first entry. I was diagnosed the end of June with inoperable pan can. I went through an experimental drug trial for Tnferade in the fall. It was absolutely brutal….and did nothing as far as we know. My tumor has remained basically “stable” since my diagnosis, with my current treatment of gemzar every other week. The gemzar really knocks me down for a few days, but being as I’m still “stable”, I guess it’s worth it. Early September of this year I spent two weeks in ICU, as all of my treatments/drugs created a 5cm duodenal ulcer……Had no idea I had it until it began to bleed profusely…..10 pints of blood later, I’m still here. Back to work now, but only three days a week. Absolutely dreading the winter, having lost 50lbs since this started I don’t have an ounce of fat for insulation!

Feeling so much better since the ulcer was taken care of! I believe it has been a undetected problem for quite some time, but how would you know….I mean was I having a lot of abdominal pain…yes….but I have pan can so how do you differentiate? Best of all I am sleeping better. Prior to the episode, I was usually only able to sleep two hours or so at time! Now my sleep is nearly “normal. I had plans to go to Vegas with my family in October for a family wedding….but of course was side lined by the hospitalization. Was able to rebook my husband’s ticket and mine for the first week of December and am excited at feeling well enough to have a good time…..and have some nice weather, if only for a weekend!!! Of all the compromises this illness has forced upon me, not being able to tolerate traveling much has really been one of the worst things since I got sick. Prior to getting sick I travelled the world extensively. I have plans to celebrate my 50th birthday this March in London…and soooooo hope I will still be well enough to do it!

Hello friends! Still here!!! Have gained back 25-30 lbs. and doing much better! Been off chemo for eight weeks now. The last round has damaged my nerves in my hands and feet. The doctors say they have exhausted all established tx options for me. This is not necessarily bad news, as the reason is more people in my shoes…don’t get this far. My last scan showed my liver mets are nearly imperceptible and the once very large head tumor itself shows a “residual”! They don’t have any idea what this means in the long run, and consider me a “lucky” anomaly. I am far from the person I was physically, before this started…but certainly grateful to still be here. I hope someone reads this post who has been recently diagnosed with inoperable pan can……I know that the odds are so very poor for most of us….but PLEASE believe there are cases like mine out there…..It isn’t always a 3-6 window. When I was diagnosed, I never expected to be here this long…26 months and counting. Not that I was being a defeatist or negative…..It’s just as a healthcare professional myself, I understood the grave reality of my situation. That said….we all MUST remember….ever case IS different and the best advice I can give is to always stay positive!!! Since I the first of the year I have begun to try to resume my life’s passion….regular travels. I have been to London twice, one in March to celebrate my 50th with friends from around the globe, and last month for a music symposium my husband was invited to attend. I plan on getting back to London in a month or two, and to Vegas in September!!! Anyways…thanks for reading…and stay positive!!! XOX

Patient 2: Female Caregiver of Male patient (USA)

Just little background… My husband, 54, was diagnosed with Stage IV Pancreatic Cancer last Sept. We went to have the Whipple procedure and found the cancer had spread to his abdominal cavity. He just completed his 10th round of Folfirinox. The treatment side effects have been continuing to get worse…. he sleeps most of the day and when he is awake he is in pain. His weight has gone from 220 to 150 in the last year and with his appetite gone it continues to go down. We have been holding on to the hope that once he completed 12 rounds of Folfirinox they would do another CT Scan and God willing the spots on his abdominal wall would be gone.

We thought he would then be a candidate for the Whipple. He has a tumor in the head and tail of his pancreas. Today we were told that wouldn’t be happening…. while I understand the reasoning (the lengthy recuperation period, the added weight loss and the overwhelming odds that the cancer would come back anyway) I am heartbroken. I had convinced myself that we were going to beat this. I never let myself think we couldn’t. I’m supposed to grow old with this man, our “golden” years…. we raised three beautiful children together, watched the oldest get married, watched them graduate and go their own ways…. it was supposed to be “our” turn. Our kids are 25, 26 & 30.

Today we had to tell them that time is limited. All I can hope for realistically is another wonderful five years… I really hope I get another 5 years.

Being Your Own Advocate

Tamara Lobban-Jones, Patient Power Producer and Lung Cancer Community Manager, and Lisa Goldman, a stage 4 non-small cell adenocarcinoma patient discuss why cancer patients need to be their own advocate.

They discuss the need for doctors and patients to communicate in new ways that respect the balance between a doctor’s expertise and patients’ own thoughts and knowledge. With the ever increasing developments in cancer research, it has become harder for oncologists to understand everything about each specialized form of a certain cancer. As Lisa points out, all that patients need to know about is their own cancer, so they can dedicate more time and energy into researching than a doctor may be able to. Being an active participant in your cancer journey is the best way to feel confident in your decision making.

Being Your Own Advocate from Patient Empowerment Network on Vimeo.

Be Your Own Best Advocate

(Editor’s Note: Gina Goldfarb is a cancer patient and founder of New Beginnings Coaching Services, LLC, which helps women with breast cancer cope with the emotional and physical challenges of a cancer diagnosis.)

Gina Goldfarb

Gina Goldfarb

I have walked in your shoes. I have been in the shoes of a caregiver and I am a breast cancer survivor and I am a certified professional coach with a niche in survivorship.

I have seen firsthand how being your own best advocate throughout the cancer experience can give you your power back and get that feeling that you really are in control at this time.

It all comes down to choices. As a coach, the value that I deliver to my clients is around educating them on how we show up daily in our experiences, providing awareness to them, showing them that we do have options and choices, despite the fact that we are experiencing very heavy emotions and may feel like we are at the effect of what is happening to us. We can often feel like we are “victim” to our experience, our doctors and our caregivers, but that is just chatter that our mind creates. It is also completely valid and normal for what we are going through, but we can shift our energy to a more empowering place where we start to be the cause of our lives, meaning we jump into the driver’s seat and take back control by becoming an active participant.

Patients need to educate themselves about their disease so that they can have intelligent conversations with their doctors. In this age of technology, we have so many resources at our disposal online. There are so many websites, support groups and organizations that offer information about a particular condition. We can look into conventional medical treatments and alternative treatments that compliment each other. It crucial that patients avail themselves of these resources to better understand their condition and treatment options.

When I was initially diagnosed and went through the series of testing that brought me to a place where my doctor told me I needed a mastectomy, I had already known what I was going to do, but I pursued the following dialogue with my breast surgeon: The conversation went like this: “I understand what you are telling me medically, but I want to ask you this a question…as a woman, what would you do if you were in my shoes?” Her answer was quite poignant and exactly the choice I had made before I even posed the question to her. Her response was: “I would probably have a double mastectomy.” I told her that is what my choice in my gut was and where I wanted to go with this. Thank God I went with my gut, because after surgery they found more tumors in one breast and pre-cancer in the other breast! Based on my experience and my own research, I knew this was the right choice for me. I was my own best advocate!

I just had an experience with a client where she felt like her doctors were ignoring her concerns and putting off her surgery for more than a month because of their scheduling. She told me she felt victim to and at the control of her doctors. Having a relationship with your doctor is like having a relationship with any other individual in your life, it has to be reciprocal and it has to feel right. She called me to check in a few days later and told me that based on our last coaching session, she had seen other doctors and was now looking at different options and resources. She took additional action to reach out to other doctors who understood the urgency of her disease and she was now having surgery in just a few days instead of waiting and delaying the disease growing in her body for an additional 30 days as her original doctors had advised her. She took a proactive role in her health based on her own research and knowing that she had other options!

Our medical doctors are experts who are focused on medicine and getting us healthy. They treat us depending on what we tell them and if we don’t take the time to dig deep, do our own research, ask questions and tell them all of our concerns (even if we feel like we are taking their time up or being “annoying”) it is something we have to do! If we don’t ask questions our doctors are only going to act based on what we are telling them. If we don’t have the right relationship with our doctors it may affect our energy level and how we move forward in our action.

The bottom line here is that no matter what your diagnosis or prognosis is, we have choices! We have options, resources, the right to second opinions, we have the right to ask questions and a choice on what energy level we are going to live in each day living our lives each day moving forward.

 

 

 

 

 

Questions Patients Have About Clinical Trials

Interview of Dr. Philip Thompson, Assistant Professor, Leukemia Department, MD Anderson Cancer Center

Dr. Philip Thompson, MD, Assistant Professor, Leukemia Department, Anderson Cancer Center is an oncologist and a researcher who runs many of the clinical trials at MD Anderson. Dr. Thompson is interviewed by CLL patient, Carol Preston about some of the many questions patients have concerning clinical trials.

Dr. Thompson discusses informed consent and the lengthy paperwork involved. He explains that the informed consent document usually covers legal requirements of all stakeholders in the trial and is therefore often difficult for patients to understand. At MD Anderson, there are nurses and other healthcare personnel who can help a patient through this process.

Dr. Thompson advises patients to ask questions of their medical team. An important question to ask at the outset is  what are the benefits and risks of the trial versus the benefits and risks of the standard treatment of care.

Logistics is also an obstacle for many patients. Early phase studies require a great deal of office visits and testing which, in turn, means a great deal of travel to and from the hospital. If the patient lives far away, this could be a hardship. Again, patients need to ask questions and make decisions about what is the best option for them.

Cost is an issue for many patients. Trials require more testing that their insurance may not cover. As a guiding principle, there are 2 types of tests in a trial: those that are considered specific to the study (these are covered by the trial sponsor) and those that are considered standard of care (these are billed to insurance). But there are gray areas. For instance, the study may mandate a CT scan every month and the insurance company may not consider that to be standard of care and not want to pay. Again, patients have to ask questions and demand answers to those questions so that they can make the best decision for them.

Bottom line is: Ask, Ask, Ask!!! Ask questions of your medical team and if you don’t understand the answer, Ask Again!

Questions Patients Have About Clinical Trials from Patient Empowerment Network on Vimeo.

After Failed Chemotherapy, A Clinical Trial Gives Hope

Interview With Cancer Patient, Lisa Weiss

Lisa Weiss, a 3x cancer survivor, has an aggressive form of chronic lymphocytic leukemia. Lisa underwent chemotherapy for her CLL, but she was not responsive. She and her doctor researched clinical trials and found a trial that was just opening.

Carol Preston, a CLL patient herself, interviews Lisa about her experience with her disease, how she searches for information and her relationship with her medical team.

Lisa explains that she has been dealing with her disease for quite a while. She founded a support group on Facebook (CLL, SLL, NHL Cancer Support for Women) and helps new patients navigate their journey. It is the new patients who have so many questions and who are quite overwhelmed that Lisa tries to help. She keeps her group posts understandable and less technical so that newer patients can learn about their disease and easily take questions to their doctor.

Lisa says that her doctors listen to her because they know her and know her history and know that she wants to take part in her treatment. Lisa’s doctors know what her goals are and what she wants to achieve. She adds that once a patient has confidence and understands about their illness, the conversations are pretty easy.

Lisa concludes by advising patients to learn as much as they can. Once you understand the risk/benefit, you can make decisions more easily.

After Failed Chemotherapy, a Clinical Trial Gives Hope from Patient Empowerment Network on Vimeo.

What It Feels Like to Have Breast Cancer: Diary Entry

Diagnosed With Breast Cancer May 14th, 2015

Caught incredibly early, I am very lucky! I had a lumpectomy on May 22nd. It did not spread to my lymph nodes. I start chemotherapy on July 17th. It will only be 4 treatments 3 weeks a part. Then radiation followed by hormone therapy. The worst part of all of this so far is watching my loved ones reactions to what’s going on with me. I’m hoping this forum is a place where I can vent my frustrations and not see how it effects the people that care for me. Sometimes I just need someone to listen and not say or do anything. I’m hoping I have found the place I can do that!

One Month LaterBreast_Cancer_Entry2

Augh!! – That’s all I can say right now. That’s not true it’s just how I feel. I shaved my head last Friday before work because I couldn’t stand the hair coming out in chunks. GROSS!! It was so GROSS! And then I felt FREE totally free from that anxiety. Relieved and Happy. I almost love my bald head. Almost!! But that didn’t last long. Now I hate it that everyone knows. I no longer have control of who I tell, if I want to tell. Cancer again has taken something away from me and I HATE IT!!!! I HATE IT!!!!! And don’t get me started on the pity looks. Please stop looking at me with pity. My life is great. I am loved more than I deserve. My support group is unbelievable. Everyone should have the good that I have in their life. Why isn’t it enough? Why do the pity looks upset me so? I wish I could get a temporary tattoo on my head so people would think I’m a bad ass instead of a sick person. Is it wrong to feel this way? Then the guilt sets in. I feel guilty because this is only an inconvenience. I will recover and be able to do the things I love. It’s just a sucky roller coaster ride that I am not enjoying….. Did I mention I love roller coaster rides? Trying like hell to make the best of things and feeling like I’m failing miserably……..

Three months after diagnosis…

I have made it! 10 days after my last chemo treatment, 30 lbs. heavier, with neuropathy in my hands and feet I was up on one ski. No one was going to judge me. I had done it!!! So as I let go of the handle and slowly sank into the brisk fall water I let go! I let the sobs come and released all that cancer and its treatment held over me. It was one of the most monumental moments of my life. At that moment I knew I was not only a fighter, but a survivor as well.

 

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Bringing a Family Member to a Doctor Appointment

A cancer diagnosis is an overwhelming, life-changing, disruptive event in the life of anyone. When a patient goes to meet their doctor, they are usually stressed, anxious and afraid. Therefore, it is helpful and advisable for them to have a family member with them to take notes, record the conversation, ask questions and basically monitor the appointment and keep track of what transpired. The patient can then talk over the appointment touch points with the family member after the fact.

Also, the family member can either confirm or elaborate on the discussion with the doctor. It is often difficult for the patient to remember events or details when asked questions about side-effects, coping with their illness, day-to-day regimen and mental attitude. A family member can help provide these details and can add validity.

It is helpful to prepare for a doctor appointment by making a list of questions to ask and a list of events or topics to talk about. A family member can help with this and even record the conversation if that is necessary.

Make the very most of your doctor appointments by asking a family member to accompany you!

Watch the following video as Dr. Malcolm DeCamp of the Robert H. Lurie Comprehensive Cancer Center explains why bringing a family member to a doctor appointment is a great idea.

Bring a Family Member to Your Doctor Appointment from Patient Empowerment Network on Vimeo.

An Oncologist’s Perspective on Clinical Trials

(Editor’s note: This article is in 2 parts. This is Part 1 (go here to read Part 2) and consists of an interview of Dr. Anita Wolfer, Senior Oncologist and Head of Unit in Oncological Research, Lausanne University Hospital (CHUV). The interview was conducted by the “Indomitable” Christine Bienvenu, breast cancer patient, avid patient advocate and board member of the Patient Empowerment Foundation, our sister organization under development in Europe. And please, don’t be concerned that this is an interview with a European oncologist. You will be surprised to see that the issues, thoughts, concerns of patients and doctors are the same. These issues are worldwide!)

Great progress has been made today in immunotherapy and targeted therapies – especially in cancer research – thanks to patients having access to clinical trials. It is crucial that patients learn about their options.

Interview With Dr. Anita Wolfer

The Indomitable Christine Bienvenu

The Indomitable Christine Bienvenu

Christine Bienvenu (CB): How do clinicians learn about clinical trials?

Dr. Anita Wolfer (AW): It depends very much on where they’re working: Doctors in university hospitals are constantly informed of clinical trials. Their peers outside the hospital environment are not, though: It’s up to them to actively find clinical trials and stay informed.

 

CB: Here in Switzerland, are there formal protocols in place for spreading information about clinical trials?

AW: In terms of the medical system, there aren’t any formal protocols on doctors being up to date on clinical trial options. I think it’s important that university doctors take it upon themselves to keep their non-university environment peers informed. Often, unfortunately, those oncologists working outside the hospital environment only think of clinical trials when conventional treatments have failed. For researchers like us, it’s more second nature to turn to them for treatment options.

Here in Switzerland, the “Réseau Romand d’Oncologie” (Western Switzerland’s oncology network) centralizes all the information about clinical trials, and keeps it updated. For the new Swiss Cancer Center Lausanne (SCCL) opening in 2017, its director, Prof. Coukos’ vision is simple: All information – clinical trials, research, collaboration, and participatory medicine – should be accessible to patients and professionals alike.

 

CB: When and why do clinicians talk about clinical trials to their patients, and how do you view the patient’s role in trials?

AW: Often today, oncologists will only talk to a patient about clinical trials if they see that there’s a direct benefit to the patient. But in my view, it’s important to inform the patient of the clinical trial, regardless so that they too can look into the application process. In an ideal world – and I say this as an oncologist and clinical researcher – there would be a clinical trial for every patient who walks through our doors.

As for the patient’s role, I’m a firm believer that sharing is building in this profession. Patients are crucial in this process: No-one knows their bodies better than they do. The way I see it, any patient of mine gives me the opportunity to learn. I don’t want to waste that.

 

CB: What obstacles do clinicians face in conveying clinical trial information to their patients?

AW: Unfortunately, some oncologists are afraid that university doctors might “steal” their patients, so they don’t readily refer them for fear of losing income for their own hospital. With patients being so closely followed during the clinical trials as well, this is comforting: Often, they’d rather not go back to their ‘regular’ oncologist. In my view, it’s a shame to look at it that way: If there’s a relationship of confidence and trust with their primary oncologist, if patients know they will get all the necessary information, they’ll be more inclined to stay with their respective ‘regular’ oncologists. To be brutally honest, my feeling is if an oncologist is upset about a patient seeking a second opinion, then maybe it’s time to find a new oncologist? It happens in the medical profession: I’m not immune to it – no-one is. But it shouldn’t be an issue… Just like in any relationship, if the doctor/patient relationship isn’t working out for the patient, he or she has every right to move on.

 

CB: In your profession, how important is mindset – in both the patient and the doctor or clinician?

As in any profession, or with any patient or co-worker, there are always those who are willing and excited to go the extra mile. If the mindset to do so isn’t there, there really isn’t much that either a patient or an oncologist can do in terms of moving forward. A pro-active mindset is crucial.

 

CB: In the same vein, how important is mindset in clinical trials, then?

AW: Being convinced about the clinical trial is also very important – not only for the patient, but for the doctor. A well-informed doctor means a well-informed patient. Speaking for myself, I’m constantly on the lookout for the best treatment options for my patients – even if it’s a clinical trial outside the CHUV. Why wouldn’t I? It’s about moving forward in cancer research, not about being territorial with knowledge.

 

CB: What role, for you, does the sharing of information and access to clinical trials play in patient mindsets?

AW: Armed with information, most patients are willing to be a part of trials – even if it isn’t one they had specifically hoped for. Time and again, we’ve seen how patients who participate in clinical trials usually have better outcomes than patients who don’t. Beyond the obvious rigorous monitoring, the crucial element here is that the patients feel more responsible for, and engaged in, their care. What strikes me, time and again, is that clinical trials offer hope. And while not every clinical trial story is a positive one – with frustration and heartbreak often integral to the process – hope is a crucial element and great motivator.

 

CB: Getting into clinical trials is no small feat. What improvements, if any, would you suggest? Can patients be better-informed about clinical trials?

AW: In an ideal world, there would be a clinical trial for every patient. One of the objectives of the CHUV oncology department is to have a portfolio of trials so that there are alternatives for every patient. And despite limited resources, the department is working hard to open up a maximum of number of trials. Also, with the SCCL opening up in Lausanne, more research funding is coming in, and more specialised oncologists are coming on board.

 

CB: What for you is a key component of a successful patient/clinician or doctor relationship?

AW: Ultimately, it’s about trust, confidence and collaboration. And going back to your previous question, if patients feel they’re being fully supported by their oncologist, they’ll return to them – university hospital setting or not. To me, it’s extremely important that patients take the necessary steps to establish the relationship of trust that they seek.

 

CB: What feedback have your patients given you about their experiences in clinical trials?

AW: Some patients will say outright that they’re not interested. But the vast majority – I’d say 70-80% – are willing participants. So far, I’ve only ever had one patient tell me she wasn’t happy with a clinical trial. For most, it goes beyond participating for their own benefit, per se: it’s about being part of a greater cause and helping medical science advance. Patients are genuinely altruistic. What is clear, though, is that it’s a team effort that involves the patient and the medical community.

 

CB: Where can patients find information about clinical trials?

AW: There are a number of great resources out there. In no particular order, I can suggest the Swiss Group for Clinical Cancer Research (http://sakk.ch/en/) or Clinical Trials (https://clinicaltrials.gov/) which is a service of the US National Institutes of Health that lists all the studies being done in all 50 US States and in 190 countries.

Here in Switzerland, there are obviously the Lausanne University Hospital (CHUV: http://www.chuv.ch/) or the Geneva University Hospital (HUG: http://www.hug-ge.ch/) websites. Experience has taught me that the university websites are sometimes a bit outdated, but patients can send emails directly to oncologists there and should get an answer.

 

CB: Any parting words of wisdom?

AW: Patients never doubt themselves in asking questions. There is no such thing as a stupid question. If a patient isn’t having his or her questions answered, he or she has every right to find someone who will! Questions are crucial: They lead to greater understanding, knowledge, and progress.

Also, it’s important to remember that in Clinical Trials, limits have to be set to be able to provide realistic results. Make the criteria too broad, and it becomes difficult to show a trial’s effectiveness. With immunotherapy, clinical trials broaden patient eligibility. Granted, a patient needs to be healthy enough to be able to benefit from a trial, so if for example a patient is in palliative care, they wouldn’t be eligible – unless, of course, the clinical trial is in palliative care.

The National Cancer Institute’s (NCI) “10 step guide on how to find a cancer treatment trial” helps patients better understand what clinical trials are all about, how to talk to their doctors, and know what questions to ask, visit: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/trial-guide?cid=tw_NCIMain_nci_Clinical+Trials_sf39211784

Getting a Second Opinion

“Get a second opinion!”

This is important! Who doesn’t get a second opinion when having work done on their car or house? Isn’t your body and health more important!

Go to a specialist and get a second opinion. Travel the distance if need be. Your health is so important. You don’t have to be followed up on every visit by a specialist if you live far away, but you owe it to yourself and your loved ones to have a specialist on hand as the “architect” of your healthcare treatment plan. Cancer is a serious disease and the specialists see only cancer patients day-in and day-out – they are the ones who keep up with the latest news and treatment options. They are the ones who have access to clinical trials and can let you know all the options there.

Watch the following video from our recent town meeting for lung cancer patients and listen to the panel discuss the importance of getting a second opinion:

Getting a Second Opinion from Patient Empowerment Network on Vimeo.

A Clinical Trial as a Positive Experience

During the fifth session of Patient Cafe™, Mike talks about his initial diagnosis and his feelings during that time. Mike had no symptoms of his disease and was on watch and wait. He felt fine but was concerned that his healthcare plan did not give him access to a CLL specialist. He switched plans in order to get a second opinion and ended up seeing Dr. Rosen from City of Hope who helped him enroll in a clinical trial.

Mike had a very positive experience during the clinical trial. He had almost no side effects and responded well to the treatment. When asked what he would tell other patients who were perhaps a bit afraid of enrolling in a trial, Mike answered that it is very easy to be afraid if you read about all the horrible side effects that are possible. But if you talk to the medical team and ask them what is most likely to happen, they will give you a pretty good idea.

Watch the video and listen to Mike relay his experience:

A Clinical Trial as a Positive Experience from Patient Empowerment Network on Vimeo.

Breast Cancer Survivor – Exploring alternative treatments and clinical trials

Diary Entry

To all my breast cancer sisters….as I found out when diagnosed with breast cancer in January 2012, we’re all part of a big sorority. My cancer was found from my yearly mammogram. I couldn’t feel any lump and neither could my doctor. Before making this too long let me just state the steps of my journey: my prayers became very specific to this news; I went back for an ultrasound – definitely found something suspicious; next met with surgeon, she ordered an MRI & amp, biopsy; result was a stage 1, invasive ductal carcinoma (scary sounding); surgery was recommended, also was told I now had a team of doctors I would be seeing (radiologist, medical oncologist and nurse navigator).

That’s the short story if you want to stop now that’s OK. However, I do want to mention the two newer medical treatments I was able to utilize after surgery – Savi catheter implant for radiation (1 week of treatments vs the normal 5-6 weeks of radiation) and Oncotype.DX test to determine if I would really benefit from chemotherapy. There’s lots of information available on both of these treatments, and of course discuss them with your doctor. From my experience I would recommend both of them if the pathology results are such that you meet the requirements for these treatments.

So the process began, I had at least a 1″ stack of papers to read on breast cancer treatments, types of surgeries, chemo, radiation, etc. At first I didn’t want to read any of it but after a few days I started digging in since I would have to make decisions particularly regarding what type of surgery – lumpectomy or mastectomy, pros & cons on both. I had about two weeks to make up my mind – I read, read, read & prayed, prayed, prayed (my husband was my partner in all my decisions as well). My choice was for a lumpectomy (called breast conserving surgery)based on the small size of my cancer & the location, and the fact that if after surgery the results showed it was in the lymph nodes I could have a mastectomy.

There’s no doubt that all of a sudden our life was focused on the doctor’s visits, education, patience and keeping down the anxiety while waiting for the day of surgery. The day of surgery finally came, prior to the actual surgery I had to have two procedures done; two wires implanted (with ultrasound guidance to help pinpoint the cancerous area for the surgeon, and a shot of dye injected in the breast which allows for the surgeon to pinpoint the sentinel lymph nodes (the first ones that would show if the cancer was on the move). The surgery went well and I went home that same evening to wait for the pathology reports which took two days. I was very anxious, of course, for that next appointment wondering what the report would show and knowing my next steps in treatment would be determined by those results. I was Blessed! I had no cancer cells in the lymph nodes and the margins around the cancer were clear. The surgeon had put in a temporary spacer during surgery hoping that I would be a candidate for the Savi catheter. My results did meet the requirements, so during this appointment she took out the spacer and inserted the Savi catheter. This meant then that I would see the Radiologist the next day and the radiation treatments would take place the following week – Monday thru Friday, twice a day, and that would be all the radiation treatments I would have.

It was almost two weeks after finishing radiation that we met with the Medical Oncologist and again, I was BLESSED, the test (Oncotype.DX) showed that I would not benefit from traditional chemotherapy. The doctor did want me to take a 1mg pill daily (his recommendation for me was Arimidex – one of several chemo drugs available) for 5 years. There are possible side effects with all drugs and you can switch to one of the other drugs if needed – everybody is different and you have to work with your doctor to determine what is best for YOU!

I have made this a very long entry, but I wanted to put this down for my own record of this cancer journey, and if the information is helpful to anyone else I would be very happy. I would welcome any questions regarding any part of this journey – diagnosis, treatment, surgery, post-surgery decisions, etc.

My final thoughts would have to be that the most important part of this journey was the deep gratitude I have for my husband (a great caregiver and partner throughout this entire 3 month trial), my children, son & daughter in-law, my grandchildren and all the prayer partners whose prayer support was so strongly felt and deeply appreciated. I was never alone, the Lord was always with me!

I would love to offer my support to any one facing or already on their breast cancer journey!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a cancer diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

 

Spotlight On: Cancer Support Community: A Great Resource

The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area.

I thought it worthwhile to copy the CSC information for two helplines that CSC offers to any cancer patient. The first helpline, called Open to Options® helps cancer patients make decisions about treatment. The second helpline, called Cancer Support Helpline® is for patients, caregivers and healthcare professionals who are looking for information or support. Please avail yourselves of these excellent resources from the Cancer Support Community!

Open to Options – Patients

Making a decision about cancer treatment can be an overwhelming experience for many people. Important decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible.  Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.As you look at all the treatment options with your oncologist and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as what your doctor feels is the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments are designed to control pain and other symptoms when a cure is not possible. Surgery, chemotherapy and radiation can have difficult side effects, so it’s important for you to weigh the benefits and the challenges, and make a decision that is best for you. Cancer treatments today have come along way from years ago. There are many medications that reduce side effects and make it possible for you to continue to work or keep up with your usual activities.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. Using this service can help you get the most out of your visit with the oncologist and help you talk more openly with your health care team about the things that really matter to you the most in relation to your cancer treatment. In a brief one hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and doctor explore your situation and develop the best treatment option.

Tips for Treatment Decision-Making

  • Learn about your cancer and treatment options. Try and understand as much as you can about your diagnosis and the possible treatments. There are excellent booklets and online information available through the Cancer Support Community, the National Cancer Institute and many other organizations to help you get more informed.
  • Bring someone else along.  Bring a family member or friend along to listen along with you, take notes and keep track of the options.
  • Talk about your decision with someone you trust. It can be helpful to talk through your ideas and concerns with family, friends, clergy or health professional. Some people find that support groups are a useful place to gather information and suggestions from others.
  • Consult guidelines or other decision-making tools. The American Society of Clinical Oncology (ASCO) and other cancer organizations publish guidelines and treatment decision-making tools to help doctors and patients understand various treatment. In addition, some cancer centers offer sophisticated statistical tools you can use with your doctor to help determine the best treatment option based on your personal medical information. Always use treatment guidelines and other tools with the help and interpretation of your doctor.

In addition to the Toll-Free Cancer Support Helpline, 1-888-793-9355, Open to Options is also available through these Cancer Support Community affiliates. Find a CSC affiliate near you and call today for an appointment!

 

Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with Cancer Support Helplinecancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!
Disclaimer
The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.

 

Does Patient Empowerment Lead to Better Cancer Treatment Outcomes?

According to a study presented at the World Congress of Psycho-Oncology (WCPO) in late July, 72.3% of patients diagnosed with cancer defer their treatment decisions to their doctor. While this number is not surprising, it is cause for concern.

With a diagnosis of cancer comes a barrage of possible options for treatment. Often, choosing between these options can be overwhelming and intimidating, especially as there is typically not a clear answer and many uncertainties in terms of potential outcome.

How can we help patients navigate these tough decisions, such as whether or not to get a second opinion or participate in a clinical trial? How can we help patients gain the confidence they need and help them feel empowered and in control as they discuss treatment options with their healthcare team?

 Helping patients self-advocate

A survey done last year by Patient Power of 1295 chronic cancer patients showed that 73% of those
surveyed said the health information they found online helped them feel more confident and more in control of their health (see infographic at the end of this post). Learning about your illness from experts and from other patients can be a rewarding and empowering experience.

Organizations such as the Cancer Support Community (CSC) and others, including us at the Patient Empowerment Network (PEN), offer programs to help patients stand up and advocate for themselves and become informed so that they, in partnership with their heath care team, can make the right decisions for them.

Programs and resources designed to empower patients

The study presented at WCPO found that educational workshops, such as the CSC’s Frankly Speaking About Cancer program, that aim to educate and empower those affected by cancer can have dramatic outcomes in terms of patient confidence in making treatment decisions. In fact, the study found that as a result of attending a Frankly Speaking About Cancer workshop, 85.5% of respondents reported having increased confidence in discussing treatment options and making treatment- related decisions with their health care team. (Harvey, et al 2015)

 

PEN’s Town Halls and Patient Café programs give patients and carers tools and resources to discuss treatment options, including clinical trial participation, with their doctor and their family and make informed and empowered decisions throughout their illness.

Participant surveys from these meetings are overwhelmingly positive. Over 80% typically rate the event as good to excellent, and many write in emails like the following:

“Thank-you for all you do and have done to help those of us with CLL better understand this journey we are traveling.   The information you give is such a great help when I talk with my doctors and just for peace of mind in better understanding what I am facing.  Mary”

Answering your questions about clinical trials

In addition to helping facilitate conversations about treatment decisions, PEN offers a comfortable and convenient place to find user-friendly information about clinical trials. One of our goals is to help you understand the process by introducing you to people just like you who have participated in, or are considering participating in, clinical trials. We also offer opportunities to hear from doctors, nurses, caregivers, caseworkers and others about their perspective on what it means to participate in a clinical trial.

Patients helping patients

There are many resources available to help patients navigate their journey and we encourage you to take full advantage of them. If you can’t find what you need, don’t hesitate to reach out to let us know how we can better help you. And, most importantly, please remember, you are not alone. We stand beside you as a community of patients helping patients.

 

 

 

Patient Power Infographic

Sources:

http://www.cancersupportcommunity.org/General-Documents-Category/Research-and-Training-Institute/Posters-and-Presentations/Factors-Influencing-Treatment-Decisions-Among-Cancer-Patients.pdf

http://www.patientpower.info/about/survey-results-2014

Diary From a Female Myeloma Patient

Female – 53 years old

Diagnosed July 2014

My thoughts on Myeloma – June 2015

It started with an unexplainable pain in my back that spread to my chest – to my surprise I was diagnosed with multiple myeloma a short time later.  I don’t have the symptoms I’ve read about and I am thankful for this and any delay in what might come.  So, now I’m in a club I never thought I’d join – the cancer club. I do find comfort n connecting with those in a similar situation and I have learned from each of you.  It’s the simplified meaning of our cancer that is expressed through personal experiences that brings me clarity and peace.  I’ve been stable and we’re holding off on treatment for now.  It’s a look into the future with the promise of new and upcoming treatments so we wait.  As a cancer patient I worry often about every ache and pain. Does it mean my body is failing me…is the cancer traveling somewhere new?  Paranoia is much like cancer…they travel hand in hand tormenting the patient and their families. Lately I’ve been able to free my mind of what the future holds. I long for total freedom from the one thing I hate more than anything….I despise you cancer!  Today I will not think about you! You don’t deserve my thoughts. I challenge anyone reading this to do the same. There will be good days and bad days but any day we have to share our experience is a great day!

Mucosal Melanoma – Voice of a Caregiver

We respect the privacy of each shared personal stories.

For this  piece, we have removed the individuals name and have identified her as Lilly. 

Meet Lilly:

“Anyone who has cancer is the incredible person,” says Lilly.

Lilly is a full-time mom, who often spends more than a dozen hours in a week supporting her mother who was diagnosed with mucosal melanoma in May of 2015. “I never heard of Mucosal Melanoma until May 15 and want others to know that name.”

Mucosal Melanoma

According to the Melanoma Research Foundation, Mucosal Melanoma is a rare form of melanoma, making up only 1% of reported melanoma cases.  The location of the disease can affect any mucosal surface of the body.

“This is not the cancer that will run away – I want people to know the name.” Throughout Lilly’s adult life, she too has battled a series of health issues and recognizes the importance of developing a coping mechanism to support herself and her family. “Life is about fighting, about survival, not taking anything for granted. If you have gone through something traumatic… you fight.”

When Lilly first started learning about Mucosal Melanoma, she was devastated to learn about the disease’s trajectory, but she now says “you remind yourself about all the good instead of bad.” When she started digging, she found hope: “I started finding survivors, blogs, and the good things, the drugs showing improvements.”

The strength to prevail as a caregiver emerges through the love of Lilly’s mother. “This isn’t me.. I am not the one with cancer.”

Lilly discusses the importance of a caregiver’s cancer education. She says you do not want to hear “you just have to fight.” You must “make sure you are educating yourself on the disease itself to be a good caregiver.”

Lilly’s two children – a  7-year-old son and 9-year-old daughter – also share their compassion and desire to make a difference for Mucosal Melanoma. Both children help raise money and awareness by selling stickers and creating lemonade stands in their local community. The money raised by Lilly’s children has been used to buy cookies and sweets for families and friends in the patient waiting room.

In a very personal moment, Lilly shares her sister’s conversation with their mother: “What are you looking at?” Her mother responded “I wonder if I will ever see snow on that tree again.”

 Clinical Trials

Her mother’s words remind Lilly of the importance of research and opening yourself up to all opportunities. “When you deal with such a rare type of cancer, you have a 50-50 shot, and doing clinical trials, it will either work or it won’t.” She says, “If you have a chance at a shot in the dark, you have got to take it. especially with the prognosis.”  Clinical trials are the pathway to uncovering our connection to a cure.

We are in This Together

Lilly shares two important messages for all caregivers:

  • “Make sure you are being your own advocate and find support for yourself.
  • “Do not educate yourself so much that you are afraid to live.”

We are in this together. It is important to remember we all have a voice – we all have a story. Lilly could not have said it better:

“I want the world to fight with me. I don’t want to be alone. If we talk about it, we can fight together.