BC Becky

Never thought I'd want to be a breast cancer survivor

Category: Caregiving

  • Weirdness …

    I cannot describe it any other way than weirdness. On Friday we went up to Hamilton again in order for mom to have a repeat brain MRI. We are going to try again this Friday for the cyberknife treatment. It was weird watching the MRI tech place the IV in mom prior to the MRI. My only other experience with that involved me being the one sitting in the chair getting stuck with the IV.

    It appears that mom is tolerating the Sutant well. The Sutant is clearly doing something, and we think it is helping mom’s lungs, as she seems to be doing a lot better with her breathing – she even forgot to turn on the oxygen when we went for a walk the other day.

    Last weekend I had the opportunity to spend the weekend white water kayaking with a bunch of amazing women. I went with a group from Bay Area Young Survivors, and the group that put on the weekend was the California  Womens Watersport Collective – who provided an amazing group of guides that made us feel comfortable on the water as we stretched our comfort zones. I was super amazed at how well I was able to do in the boat. The last time I was in a whitewater kayak was 1999, and that was in a swimming pool! (taking lessons to help prepare us for our sea kayaking adventure in Gwaii Haanas.

    Tuesday (June 12) also presented the fourth year anniversary of my diagnosis. It is hard to believe that was only four years ago, because it feels like a lifetime ago – and yet, with the experiences I’m sharing with my mother bring me right back to the experiences I had at diagnosis … remembering my first MRI. It is weird the way life takes you back in circles in ways that you never expected.

    Anyways, this post is a series of ideas and thoughts since I haven’t blogged in a while … I’m in Welland now with mom, and things are going OK. I spent the afternoon with a friend and my hubby stand up paddle boarding and walking.

  • Progression

    Progression. It is one of the words you never want to hear. It means that cancer is growing – it is getting worse.

    For a couple of weeks now, mom has been noticing some shortness of breath. It has been getting progressively worse. We set up on oncology appointment on Monday before the schedule cyberknife radiation.

    The oncologist took one look at mom and admitted her. The immediate thought was that she might have a blood clot in her lung. Her oxygen sats were low. They put her on oxygen and gave her a couple shots of hyperin (to thin the blood in the event of a clot). They then did a chest CT.  She was feeling a little better on oxygen.

    Unfortunately, the CT results did not show a blood clot, rather they showed cancer progression. Severe progression. They were surprised at just how quickly the cancer was growing. Mom’s lungs were full of tumors. The oncologist has started her on Sutant – she cannot wait for the trial or any other medication options. There is hope that Sutant will slow the growth of tumors. Without it, mom is looking at 2-3 weeks of life. This was a shock to everyone. She was fine a few weeks ago.

    The doctors have recommended in-patient hospice (since she lives alone and the level of care she needs is increasing). We are making plans to be there.

    Yesterday, I spent most of the day crying. It is the first time since this started that I’ve been able to just let it all out. I needed it.

    I have a couple apts of my own early next week, so I won’t get there until Wednesday. Tuesday is an emotional day for me – it will represent four years since I first heard the words “you have cancer”. I don’t celebrate those words, rather I reflect upon what they mean and what this experience has meant for my life. This month I’m acutely aware of the things I did four years ago … feeling the hard spot on my left breast, going to see my family doctor, the look in her eyes when she ordered the diagnostic mammogram and ultrasound.

    And now I will add to that the words I hear from my mother. Without the Sutant, 2-3 weeks of life.

  • Mask making

    Mask making

    We were surprised at how quickly we got the call to go up to Hamilton to get mom setup for cyberknife radiation treatment. This involved the making of the mask, which were allow in to see and for me to take pictures.

    2018-05-30-14-34-37  2018-05-30-14-34-53

    The mask making process took about 15 minutes. Then we waited on as mom had an MRI and then a CT. The CT was done with the mask. The information collected was to be used to plan out the radiation treatment.

    We were surprised to get the call on Thursday that mom will have treatment on Monday. One session – which is good. The doctor said that her tumor was slightly larger than before (no idea how much is slightly), but he seem to think it wasn’t a big deal. I also left a message for the doctor yesterday about tapering mom’s steroids, which is needed for the clinical trial. I was surprised to get a phone call from the doctor this morning to discussion options.

    Now knowing the date for radiation, we called the clinical trial folks to kick that into action. The trial coordinator will talk to the doctor and put a plan in place. We are still not 100% certain that mom will get into the trial. They need to do additional analysis on the biopsy and probably need to do another biopsy in order to determine what type of pRCC she has (type 1 or type 2) as well as if her cancer is MET-activated, such that a MET-inhibitor (the trial drugs under test) might make sense. There are people on the trial who are NED – but I don’t know if they had surgery, and I don’t know how advanced their disease was before they went into the trial. We expect to hear mid-next week from the trial coordinator about the next steps.

    I really expected this process to give me a sense of “this shit is getting real”, but it hasn’t. I think I had more of that sense while watching the move Bookclub. We went to the Welland theatre, which has the nice lounge chairs. We were surprised at how busy it was – the theatre was packed. The movie was good – a comedy about older women in a book club reading 50 shades of grey. It was great to laugh. I laughed but I also couldn’t help see parallels in my parents lives. As I watched the movie, I had a sense of loss that I haven’t yet had. The sense is a grieving for the fantasy future – or an empathy for the loss of the fantasy future. My parents worked so hard that it sucks that they didn’t get a long retirement to enjoy – that long retirement of good health is a fantasy future that we all have – but it isn’t a reality for most. It reminds me to get stronger and take advantage of my health while I have it.

    I’m also struggling a little because this time, mom isn’t better when I’m leaving. Last time, she was so sick when I got here, that by the time I left she was doing infinitely better. This time, when I arrived she was doing well, but now is struggling more – struggling with her breathing – waiting for calls from the palliative care doctor. Hopefully we can see her today!

  • A telehealth call

    Yesterday we had a telehealth call with a specialist in Hamilton, where they are able to do cyberknife radiation. We went to the regional clinic in St. Catherines (about a half hour drive) to have this call. On the other end was the radiation oncologist that does cyber knife and a neurosurgeon. They did a great job explaining the process of cyber knife and highlighting that surgery (e.g. craniotomy) doesn’t make any sense. They described her tumor as small – which I thought was interesting. I cannot imagine a 2cm thing in the brain as being small.

    I had heard of the Ontario Telehealth Network, but I thought it was mostly to give remote communities access to specialists – thereby avoiding the need for expensive travel for consultations. It never occurred to me that they would use it between St. Catherines and Hamilton (about a 45 minute drive). For us in Welland, the cancer center in Hamilton is about an hour drive. The good thing is, they have setup all the followup to be in one visit.

    Now that mom has consented to the cyberknife, they want to move quickly – which will help her get into the #papmet trial sooner. We were told quickly a week and a half ago, so we were hopeful but not holding our breath. At 3pm (our consult was at 11am), we got a call. They have an opening for today (Wednesday). So today we will go up to Hamilton and mom will have the mask made, and then they will do CT scans and MRIs with the mask for the simulation (I’m not sure I’m calling it correctly – but apparently they do the mask CT and MRI all in the same place). This will get more detailed pictures and more current pictures of the tumor. The doctors will then look and these and make a plan / program for the cyber knife.

    Sometime the term is confusing, as cyber knife is a brand of Stereotactic body radiation therapy (SBRT). It does not involve any incisions. There are usually very few side effects.

    The initial treatment may be one session or three sessions – depending on how things go with the simulation and if they find any micro lesions when they do the more detailed scans. From now on, mom will be following every 2-3 months with the doctor in Hamilton – with follow up brain scans.

    Once we know the dates of the cyberknife treatment – we are expecting next week – then we can inform the folks doing the PAPMET trial, and they can then start with what is needed to ensure she can get started 14-days after radiation.

    We are moving forward. I think today will be the day that things really start to feel real. When the logical brain takes a break and the emotional brain breaks through – maybe. We’ll see.

     

  • Where the mind goes

    I am reminded of the time awaiting for treatment and where the mind goes. I am reminded of when I said:

    Everything is either too fast or too slow. I feel like the cancer is growing too fast. With each new ache in my body I am worried about it spreading. Is this another symptom? Has it reached my lymph nodes? I am constantly wondering, should I be worried about this or that? (The speed of things, June 16, 2014).

    I caught myself in that worry for my mother. She is having some new symptoms, and my mind immediate went to thoughts that the cancer is growing. I didn’t think of non-cancer growth or other reasons for the symptoms. I called her oncologists office to give an update and ask for recommendations. I’m worried that the wait times for the trial will be too long. We are also waiting on the consult for the cyberknife for the brain lesion. We at least got a confirmation on the consultation appointment for early next week. Not as soon as we wanted, but it is something at least.

    For the new symptoms the doctor ordered a blood test. It could be something simple, like something low – like low RBC or another nutrient that she needs and isn’t getting. It is not necessarily the cancer growing – it is more likely a side effect of the cancer that is already there. Now we know it is growing as she isn’t on any treatment to stop it, just that it isn’t necessarily growing so quickly as to be the source of new symptoms. The oncologist is recommending that she stay with the plan for now – get the cyberknife done as that is the priority, and then prepare for the #papmet trial.

    I’m struck by the term “lesions”. It seems that rather than saying tumor, the reports say there is a lesion. I guess that word is a little less scary.

    Now we hurry up and wait …

     

  • Esophagogastroduodenoscopy – now that is a mouth full!

    Esophagogastroduodenoscopy – now that is a mouth full!

    Pardon the pun in the title. I’m happy to report that the endoscopy that I had yesterday showed that the villi in my small intestine now look normal. This means that the gluten free diet I have been on for the last couple of years has allowed my body to heal from the damage caused by the celiac disease antibodies.

    The procedure was not without some trials. The doctor suggested that to save me a poke that the anti-body blood test could be done at the same time as the IV start for the procedure (an endoscopy requires general anesthesia). Since I’ve had lymph nodes removed on both sides and am prone to lymphedema, I cannot have IVs in either arm. This means the added challenge of getting an IV in my foot (ouch).

    Yesterday, I learned that a blood draw requires a thicker needle than just the anesthesia. After four pokes in my feet (two in each foot) and an inability to get enough blood for the blood test, we gave up on the blood draw and went to a thinner needle for the anesthesia. If I had known that in advance, I would have opted to just do the blood draw separately, since I can get blood drawn from my right arm (not my left because I had lymphedema in that arm). It would have saved me many sticks and meant that I was ready for the procedure a little sooner.

    In addition to the endoscopy, I’m doing an esophagus gastroesophageal reflux test – which requires a catheter through my nose and into my stomach for 24-hours. I wasn’t quite prepared for the impact this would have. No one bothered to tell me that it would mean that I needed to be careful what I ate – as it is difficult to swallow anything hard – as hard foods get stuck on the wire that is going down the back of my throat and into my stomach. No amount of chewing helps. Also sticky foods don’t work. Fortunately, I just made a batch of fresh yogurt and I seem to be able to swallow strawberries – so I’m enjoying some strawberry yogurt for breakfast. I am so ready to have this thing out of me!

    I wonder, though, how useful the test is when the test itself directly affects food intake, and therefore affects acid levels. It is interesting to see how the ph in my stomach changes when I eat. I hope it turns out that I did this for something useful (but nothing serious) and it wasn’t just a waste of my time and making me feel yucky for no reason.

    With that self-care taken care of, I’m preparing for a return trip to Welland to visit mom for a couple of weeks. We hope that in that time she can have the cyberknife brain radiation and start preparing for the clinical trial.

    Feature image public domain via WikiCommons.

  • Online support for pRCC

    As someone with strong online support connections, when mom was diagnosed with stage 4 pRCC (papillary renal cell carcinoma), a rare form of a rare cancer, I felt the need to find some online community. It was not nearly as easy as it is for breast cancer, in that there are not a ton of communities to choose from, but on the other hand, it was easier to find a community and there was an immediate sense of community when I joined.

    The first place I looked was Facebook. For me, that is the easiest place to find online communities. Plus I know that mom uses Facebook, so she could also join and follow the community. Initially, I found a community for Kidney Cancer, but then found one specific to pRCC.

    In addition to the facebook community, I’ve been searching for bloggers with pRCC, or even RCC. Google searches aren’t as easy anymore, as they find a lot of community blog sites, and not individual blogs.  After asking in the Facebook group, I was connected with the blog SingleWhiteKidney – who in addition to have pRCC, she is in the #PAPMET trial and she is an awesome writer. If you want to learn more about what is means to live with kidney cancer as a 30-something, I recommend checking out her blog. In addition, her story gives hope, as she has been on one of the MET- inhibitors for 1.5 years now and is NED (no evidence of disease).

    If you know of anyone who blogs and has stage 4 kidney cancer, or pRCC, please leave a link to the blog in the comments. I’d love to follow it.

  • The #PAPMET clinical trial

    The #PAPMET clinical trial

    Originally mom was told there were no clinical trials that she qualified for. Kidney cancer is rare, and papillary renal cell carcinoma (pRCC) is a rare form of kidney cancer. Fortunately, she was informed that there was a clinical trial that she qualified for (or will qualify for after treating her brain mets). pRCC is an aggressive form of RCC.

    The trial is known as the PAPMET trial, and it is looking at the effectiveness of MET Kinase Inhibitors in pRCC. Currently, the treatments they use to slow the progression of pRCC are the same treatments as RCC – that is, they don’t have any treatments that are specific to pRCC and as such, it is unclear whether or not the treatments are effective. The PAPMET trial compares the standard of care, Sutant, with three MET Kinase inhibitors (Cabozantinib, Crizotinib, Savolitinib). The drugs have slightly different names in the US trial but I think that is the use of generic names versus brand names. In either case, the papmet trial is the same trial in Canada and the US. I found the Canadian trial website that has a lot of great information about the trial.

    As of March, the trial which started in April 2016 has enrolled 72 patients in the US and 5 in Canada. The full trial needs 180 patients. It follows patients for 3 years, and is expected that two years after the last patient has completed the trial (so five years after the last patient begins) the trial will have complete results. It is a phase 2 trial.

    I read through a bunch of the information on the website, and looked at exclusion criteria. The only one that is of concern is:

    “Patients with a history of treated brain metastases who are asymptomatic and have not received steroid therapy in the 14 days prior to registration are eligible. Antiseizure medications are allowed provided they are non-enzyme inducing (e.g. topiramate, levatiracetam, gabapentin).” (Protocol document, p. 39).

    The way people have explained brain mets to me, is that you get one doctor that treats you from the head up (the neuro-oncologist) and the other (medical oncologist) that treats you from the head down. I am expecting that the neuro-oncologist will recommend some form of stereotactic radiotherapy (Cyberknife is a particular brand of stereotactic radiotherapy – I’m not sure what kind is available at mom’s local clinic). In a previous post, my friend Dawn explains her experience with Cyberknife. With brain tumours, they typically do the treatment and then watch and wait – that is, they do a follow up scan in 3-months unless there are new symptoms which prompt a faster scan. Note that this is not brain cancer, rather it is kidney cancer that has spread to the brain. Mom is doing a brain MRI today and will see the neuro-oncologist on Monday. I hope that they can get this treatment planned so that it happens either before I get back there or while I’m there.

    The PAPMET trial focuses on the head down. Mom needs to get the brain mets treated first, and then once that treatment is complete, 14 days later, she can begin the PAPMET trial to start slowing the growth of the tumours from the head down.

    Once she is in the trial, they do scans every 42 days (that is, after each cycle of the medication) to see whether or not the tumours are growing. They are looking for progression – that is tumour growth. They are comparing the different medications to see which one provides the longest progression free survival (PFS), but also measuring drug toxicity and quality of life. There is little point in taking a drug that makes your life suck, even if it slows the growth of the cancer.

    It is a bit frustrating, the feeling of waiting and knowing that the cancer is going untreated while we scan and wait. I’m also conflicted about my plans. I currently have plans to go to Canada on May 20th, but I don’t have a return date set – however, I do have a retreat / kayaking trip planned for June 9-10, so my plan is to definitely be back in California by then. I’m conflicted about my needs for self-care. I’m torn between being in two places at once, about not being here for my friends that need me, but also not being at home with mom when she needs me. And then there is the guilt of needing to not put my own life on hold – the need for my husband and I to take a vacation because we cannot keep going without taking a break. We need to recharge, but the way we recharge usually involves being completely off-grid – away from contact – which means no way to reach us for days at a time, and that too is a challenge when things can change so very quickly.

    For now, I’m providing remote support. I’m making lists of questions for the various doctors. I’m trying to get information to help better understand the options and what is happening. That is something I can do. I’m also doing some physical stuff. I’m sanding and finishing the cabinets for the van. I’m working on the weed infestation behind the house – putting down new landscape fabric and rocks in the hopes of keeping the larger 3-4 foot weeds out and allowing some native ground cover to grow – right now the ground cover had pretty orange flowers. I’m playing in my garden, and whenever I have the chance, I’m getting out for a hike.

  • Not what we wanted to hear, but not as scary as it sounds (maybe)

    Mom got a phone call on Friday. The results of her head CT were in. They were not what we wanted to hear – but I’m glad the doctor was able to give her the results over the phone. I’m also glad that I had a conversation about the potential results before she got the phone call.

    I have a couple of friends who have experience with brain metastasis – that is, when the cancer has spread to the brain. It sounds really scary, especially when you don’t know anything about it. Fortunately, my friends have helped me understand that although it sucks, it isn’t as scary as it sounds.

    My friend Dawn Flores, wrote this letter that I shared with mom, outlining Dawn’s experience with breast cancer that has metastasized to her brain:

    i had 3 brain tumors in 2015 the largest was 2cm. They suggested cyberknife. i was pretty scared at 1st but the radilogist oncologist was very good at talking
    about the whole procedure and putting me at ease. He prescribed ativan as well.

    1st I had to have another MRI that took 25 minutes this made a map for him to use.

    I had another appt to make a mask that would fit snug over my face. It was a plastic that could stretch when wet. It is a very fast appt to have the mask made.

    I then had my radiation appointment a separate day. I just showed up and they played music for me and since I did take my ativan once the mask went on I was able to sleep. It took a total of 45 minutes. I only needed one appt for all 3 spots.

    There has never been any pain. I was fatigued a while later but that was all. I did have a few spots (size of a nickle) that my hairdresser noticed that had hair missing. it grew back but I never really noticed the spots since my tumors were in my cerebellum so lots of hair back there.

    It was one of the easiest if not the easiest treatments I have had.

    I had 4 spots in 2017 that were not pretreated so they did that whole process again. I had a littlebit of a headache for 2 weeks after. I let the md know and they said I could take prednisone to help or just wait it out. I decided to wait it out and the feeling went away.

    It was scary for me to hear that the cancer was in my brain but it was an easy procedure to clear it up. I hope your treatment goes smooth and you can
    continue to live the life you love.

    Hope this helps,
    Dawn Flores

    We don’t have any specifics about what mom’s head CT showed, just that it showed something that the oncologist believes in metastasis to the brain. I hope to get more details on Monday.

    On Tuesday, mom will see the clinical trial doctor, who is also a kidney surgeon. We will find out then if or when surgery might be an option. The oncologist did specify that brain mets would not exclude her from the clinical trial, which is good news as that is an issue with a lot of clinical trials.

    I am home in California now, recharging my batteries. I realized that I know how to do self-care when I’m the patient, but I don’t know how to do it when I’m the caregiver. It has taken me a couple of days, and a couple of hikes with friends, to help recharge. Now for two weeks of my medical appointments, while checking in with Mom over Facetime. She sounds like she is doing well – he clearly has more energy than she has had in a long time, and her pain is under control. Yay for that!

  • We are a rare family

    We are a rare family

    As a family, we seem to be dealing with rare health issues. When I was diagnosed with bilateral breast cancer, I learned that it was rare (less than 2%) to have cancer in both breasts at the same time.

    Then there is my brother. On Friday evening last week we had a phone call that my brother was in hospital experiencing severe dizziness. We later learned that it was a mild stroke in the cerebellum. A cerebellar stroke is very rare (about 1.5% of strokes) – again, we are a rare family. After several days in the hospital in Kitchener they have now transferred him to a rehab facility in Guelph – unfortunately not the one that was close to his house. Fortunately, he was close to my in-laws, and my mother in-law was able to get him some clothes (thank-you). The transfer happened without warning so his wife didn’t have a chance to get him additional clothing. The good news is that he has his own room at the rehab facility as well as internet access. He is doing much better and is in good spirits. It is good that he is getting intensive physical therapy so that he will be safe when he goes home, estimated sometimes mid-May. We have also learned that it is standard with a stroke that ones driver’s license is suspended for a minimum of 3-months. Fortunately, my brother knows the ins-and-outs of the Kitchener transit system (having been a bus driver for 25+ years), so he will be able to use the bus to get around town.

    We also had an oncologist appointment for my mother yesterday. Here we learned that she as a rare kind of kidney cancer known as papillary renal cell carcinoma (pRCC).

    Last week we had been told that there were no clinical trials; however, yesterday we learned that mom might qualify for a trial at St. Joseph’s in Hamilton. She has now been referred to the doctor there to see if she qualifies. The doctor there is also a surgeon, so we can talk about surgery options as well. The way things look now, there are three possibilities for her treatment:
    1. Clinical trial. This is the recommended first choice because it gives her an additional option for treatment. In addition, the clinical trial is happening because they think a different drug or combination of drugs will have higher efficacy with lower toxicity.
    2. Yervoy plus Opdivo. This is an immunotherapy combination that has worked very well with clear cell renal cell carcinoma – the most common kind of RCC.  It is not clear that it would work for pRCC but it is worth giving it a shot. The issue with this medication is that it is not currently covered as first round treatment for pRCC, so there are hoops that must be jumped through in order to give mom access to it.
    3. Sutant. This is standard of care. With the clinical trial there is a chance she would get randomized to receive this treatment rather that the different drug combinations being tested in the trial.
    I’m learning a lot about the coordination of care in Ontario. We all really like mom’s oncologist at the local clinic, which is awesome. He presented her case on Tuesday at the regional teleconference rounds and learned of the clinical trial. There is no sense of competition or anything in this system. The oncologist is happy to recommend / refer mom to the doctor that is managing the clinical trial. If she doesn’t get into the trial she goes back to the local oncologist. In the mean time, the local oncologist is working on getting approvals for both (2) and (3) above.
    Approvals are required for any treatment option. As a result, mom isn’t looking at starting a treatment for another 2-3 weeks. Now she is just waiting to hear from the clinical trial folks. While she waits, she is now attending exercise classes twice a week. She is moving better than she has in a long time and seems to be so much stronger. I feel so much better about leaving her, now that I feel like she can take care of herself but also that she has access to care and pain management if it becomes necessary.
    And after almost a month a way, and a lot of luck with rescheduled flights today, I am sitting at home preparing this post (most of which I wrote on the plane). I’m feeling a little lost at home, as I’ve been away just long enough that I cannot so easily slip back into routines. Fortunately, the sun is out. My garden got a little crazy while I was gone – with my kale going to seed and sprouting up 4-5 feet!
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