Hannaha
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Hi Jules,
I’m glad to hear that the 2nd round is an improvement on the first! Hopefully he will also feel better from having a more adequate caloric intake this time around.
As for the low blood pressure, this is not something which I have any personal experience with. I ran a google search and also searched the discussion boards here, and from what I can tell (and I am of course NOT a doctor!) low blood pressure seems to be a non-specific symptom that people sometimes have, whether it be a response to a chemotherapy regimen, perhaps a delayed side effect of radiation, or even a symptom of the disease itself. It could even be a result of your husband’s poor appetite last week. Needless to say, it is something to keep an eye on and make sure that his doctors are also paying attention to it if it persists.
Finally, the liver pains. I can of course only speak to my mother’s experience on that but it does seem that pain can be a confusing and even misleading indicator of what is going on. Particularly given that your husband’s pain seems to have arrived suddenly with his first chemo cycle and because his last scan showed no evidence of involvement this time with the liver, I would try not to worry too much about it for the present, and just bear in mind how hard his liver is having to work right now to contend with what are, essentially, potent poisons (albeit poisons that are doing good work against the cancer) that are introduced to his system during infusion. It’s not surprising that his liver might be a bit insulted by the whole process, especially given what it has already had to recover from.
This may or may not be something that you and your husband would want to explore (and do run any kind of supplements like this past your doctors before you start taking them), but my mom has followed the advice of a naturopath for ways to support the healthy function of her liver through her chemotherapy. She takes milk thistle (on which: http://pressroom.cancer.org/releases?item=212) and corn silk. The milk thistle is in capsule form, 5oomg, and she takes it morning and night. She does not take it for on infusion days or a day or so after, so as not to interfere with the chemo’s therapeutic effect, but she takes it on other days to support the liver’s normal metabolizing processes. The corn silk tea she drinks more on a “when she thinks of it” basis, and it purportedly supports both liver and kidney function which, like the milk thistle, helps her body filter the platinum roaming around in her body after the infusion. The science on corn silk seems less clear than with milk thistle, but as an interesting aside, there have been recent studies indicating that some components in corn silk should be investigated in the future for their anti-cancer properties. When my mom first started drinking the stuff, I clung to any little drop of benefit, real or imagined, that she might be able to glean from it. It has in any case I think not done her any harm, and it has a mild grassy taste that can be sort of comforting.
Fingers crossed for continued upward trajectories-
Hannah
Hi Jules,
I hope your husband is feeling better today!
I can’t emphasize enough how important it is to try to get ahead of the nausea. My mom really struggled w/ nausea during her early cycles, in part because there was a mixup w/ the pharmacy and they were giving her half-sized sublingual tablets of Zofran when dr’s instructions were for larger dosages to swallow. Apparently sublingual tabs are poorly absorbed if you swallow them. And because my mom really really wanted to be taking as few pills as possible, she was also trying not to take any except when she was really desperate. End result was she often had uncontrolled nausea through her mid-week and there were some conversations about how she wasn’t sure how she would get through it. Once we got up front on the Zofran (and got the right prescription!) things got easier, her appetite improved, and her weight stabilized.
If he continues to struggle with side effects, your doctors might start talking about a dose limitation on the gem-cis. My mom eventually got a dose reduction for the last three cycles before her surgery, and her post-surgical dosages have also been somewhat lower than what they usually see as the standard 100% dose. When we first had the dose reduction, we were all really anxious about whether it was going to be less effective. But the explanation we received (and which makes sense to me) is that the ‘standard’ dose is based on an abstract ‘average’ maximum patients in the trials were able to receive before experiencing toxicity. But none of us are exactly average, and dosages often need to be tailored for individuals’ needs. Especially since your husband and my mom have both had resections, their livers may have to work a little harder to deal with all the chemo nastiness coming down the pipes.
Fingers crossed that things start to get easier with the next infusion.
Hannah
Oh, and one more note regarding the pain: my mom had a lot of pain (centered around her liver where her tumor was) during her first 6 cycles. The pain increased and decreased according to her weekly cycle. She (totally understandably) worried that the pain meant that the chemo wasn’t working and the cancer was growing. In her case, we discovered that the pain she was feeling was probably actually the irritation and inflammation associated with cancer cells dying and being disposed of by her body (as she had a significant shrinkage of the tumor). Even post-surgery, she gets a feeling of pressure around her liver during the bad days of her weekly cycle, which we assume to be her liver sort of swollen and angry as it tries to metabolize all the nasty stuff in the chemo cocktail. The sense of pressure always recedes as the cycle abates.
Suffice to say, it is very hard to know until you have a scan what the pain your husband (or my mom) is experiencing actually means.
Hi Jules,
There are lots of discussions on this board about gem-cis and its side effects. Worth running some searches to see what experiences other have had.
My mom is about to start her 10th (and hopefully final!) gem-cis cycle, 6 pre-operatively and 4 post-operatively. What we’ve learned along this long road is that each week things are different, but that there are some general trends. By and large, the day of the infusion goes pretty well, as does the day that follows. They pump her up with anti-nausea medications and with dexamethasone. We were told that day 3 was the really hard one, but for her, days 1-4 have typically gone pretty well (if kinda ‘zippy’ from all the dex), whereas days 4-6 were some shade of crappy, and then just as she started feeling good again it was time to head back in for another infusion. This pattern has been changing of late though as the side effects accumulate.
Because the gem-cis tends to sneak up on you mid-week, it’s really important to keep up with the supportive meds for when he reaches the low point in his weekly cycle. If your husband is having a lot of trouble with particular side effects, make sure that his doctors know about them. They have every kind of medicine in their arsenal (and can also mess with dosing, etc) to help mitigate. My mom has now had this chemo administered by two different hospitals, and we’ve discovered that there is a lot of variation in terms of what kinds of supportive anti-nausea meds/etc. are offered, how they dose the dex, etc. From experience: don’t skimp on the anti-nausea meds. Better to take them as a prophylactic than to struggle to get the nausea under control once it’s pounced. We’ve found that a lot of my mom’s other side effects (trouble sleeping, acid reflux, etc) are related the dex that she needs to take, and have experimented (never entirely successfully) with different strategies for tapering her dosage down through the week.
It’s worth noting that your husband will be simultaneously experiencing several different overlapping cycles in terms of how the drugs affect him, and that each week will look different. In addition to the usual weekly up and down (as well as a longer up-down of each 3-week cycle) both drugs also impact blood cell production according to a different schedule. Cisplatin has a long cycle with a neutrophil nadir at 18-23 days, and recovery by day 40. Gemcitabine has a shorter cycle, with nadir at 10-14 days and recovery by day 21. In practice, this means that the gem’s low point will usually be during the off week, when your husband will likely be feeling better, while the cisplatin’s low point will kinda slough over into the start of the next infusion cycle, and will sometimes overlap. These may feel invisible but they are cumulative in terms of their impact on his blood counts. Whether he feels them or not, these are the times when he will be most vulnerable to picking up an opportunistic infection. He should always be extra careful about being in public, handwashing, etc., even when he’s feeling pretty good, because even a common cold can be dangerous when your neutrophils are low. My mom took to wearing a hospital mask when in crowds, which was very effective in warding away unwanted contact. In my mom’s first 6 cycles, she really struggled with low neutrophil counts, and several times had to have her infusions delayed as a result. These delays were really distressing in the moment, and I remember her expressing her anxiety that the delays meant that she wasn’t responding well to the chemo (which turned out not to be true at all!). At this second hospital where my mom is now getting her infusions, they’ve taken an aggressive approach to this by giving her regular doses of neupogen, which helps boost her blood cell production. It has its own range of side effects, though. Sigh.
I hope some of this is useful, and I really hope that your husband’s cancer will have a strong response to the gem-cis!
Hannah
Hello Findacure (I love your moniker)- Thank you for sharing you and your husband’s story. And what a story it is! I am impressed both by the skill of your husband’s medical team (and their willingness to think outside the box for an unusual case), and by you and your husband’s resilience. I’m so glad to hear that the post-surgical follow-up held good news, and I hope that you will both continue to get good news in the months and years to come.
It sounds like the docs are hoping that the SBRT ‘zapped’ the liver tumor?
I have found a lot of help in these message boards since my mom received an ICC diagnosis 10 months ago. I lurked for a long time and finally shared my family’s story after her major surgery in February. I hope you find it similarly helpful.
-Hannah
Hi Marina,
I’m so sorry to hear of your sister-in-law’s diagnosis, but welcome to our community.
I’m 110% with Mary that paperwork is a universal challenge. Our family have had to deal with a handful of incredibly frustrating hold-ups due to lost paperwork or mis-shuffled test results or whatever. My mom’s wife has been a hero on that front. She’s amazingly organized (way more than I could ever be!) and has notebooks with all the papers, business cards, files, bills, etc. She also records doctor’s appointments on her phone for us to go back to as needed. She’s had to do a lot of persistent calling of offices and double-checking about whether paperwork has arrived, etc.
My first thoughts on your family’s situation are as follows:
1) Waiting is a frustrating constant in our world, but 3 months seems out of hand for your family to still have no answers. I can’t tell from your post whether they have started any treatment yet or not. If not, then I think it is important for your sister to get started with something as soon as possible. IF, as her doctors are guessing, she has cholangiocarcinoma, then starting on the gemcitabine-cisplatin chemo would probably be a good place to start regardless of whatever other treatment they eventually settle on. Is there any way to push her current medical team about this?
2) I have heard great things about Dr. McGilvary but if you continue having a hard time reaching him, it might be worth looking to other options as well. Perhaps there are other referral centers in Canada which, although further away, might be more responsive for at least long-distance consultations?
Good luck with all of this and please do keep us updated as things go.
Hannah
Thanks for posting this, Gavin! This is a really interesting study and, I think, an important one for people who are initially told that their cancer is “marginally resectable” (high risk), or whose doctors (as in the case of my mother) initially tell them that their cancer is unresectable, but who find themselves in the happy position of having a strong response to chemotherapy. Although this study is specifically relating to people whose cancers were staged I-III, I am repeatedly struck by how often I run into examples in the literature of patients whose response to chemotherapy converts them from unresectable to having surgical options (for example, this fascinating study, which Gavin also posted on this site a while ago: https://www.ncbi.nlm.nih.gov/pubmed/28858392).
I think it is very common, especially at smaller hospitals, for patients whose cases are initially classified as “unresectable” to never be reassessed for surgical potential even if they experience significant shrinkage to their tumor. I know that in my mother’s case it took all of us aggressively seeking 2nd opinions, and not just at the beginning of the process but after we’d gone through multiple cycles of the chemo and the scans had shown improvement, in order to get surgery on the table for her. It’s hard to know what might have happened if we hadn’t gone out looking for those 2nd opinions, but I strongly suspect we might have been put onto a ‘holding pattern’ chemo regime and missed our chance at the surgery, if we hadn’t advocated so strongly.
It is really encouraging to see that the ‘neoadjuvant’ therapy, which is essentially what my mom had, is associated with such promising numbers (and for what it is worth, my mom is about to also get a few rounds of adjuvant therapy, so here’s hoping for a ‘best of both worlds’ result).
Hi Mary,
Thanks so much for digging into this question. The last day or so have been a little bit better with the help of zyrtec, so here’s hoping it will continue to clear up, especially as she continues to taper off the pain meds and (soonish) the blood thinner. Since the recovery otherwise seems to be going so well, I guess a few rounds of whole-body hives is just kind of a blip along the road.
H
Hi there W,
Firstly, welcome to the board and I’m so sorry to hear of your father’s diagnosis. I’m like you only recently a ‘speaking’ member of the community after lurking for a number of months. Your father’s mixed response to the xeloda sounds really frustrating. Great news about the primary tumor shrinkage, but dang it about the new lung nodules. I am afraid I do not have any real answers to your main question, but I do have I guess a couple of questions and a… train of thought?
Firstly, you say your dad was tested for micro-satellite instability. Very few CC patients are microsatellite unstable, but a lot more people have other kinds of mutations. Did he also get tested for a wider range of mutations? If not, it is definitely worth doing and may open up some alternate treatment avenues.
Secondly, have your doctors discussed non-chemo related options for the bone mets? I have read some (mostly here on these boards, if you run a search) about people using radiation therapies to zap bone metastases. Perhaps others could weigh in on this.
Finally, it seems like the xeloda is at least partially effective, and thus maybe worth keeping on the table while adding something else to the mix. I know that in Japan (and maybe elsewhere?) gemcitabine and capecitabine (xeloda) is often used, rather than our usual gem-cis. I know the gem-cis didn’t work, but I wonder if your doctors would be open to exploring xeloda in combination with another chemo.
Meanwhile, I know it seems tough to do, but try to take heart as much as you can in the good news that came out of your dad’s last tests. CA 19-9 coming down and primary tumor shrinkage are both great news, as is your dad’s feeling better and his normalizing liver function.
Best wishes to you and your dad,
Hannah
Hi Laura,
I second what Mary just said so well. In the weeks after my mom was diagnosed last summer, we hunted around frantically for treatment options. Time took on a strange quality, and we hated every day that went by that we hadn’t gotten her on some kind of treatment. The waiting was agony. In the end, the best piece of advice we were given was to just get on the standard chemo (second-best piece of advice – get the port-a-cath installed!). Most of the clinical trials are for people who have ‘progressed’ after first being on the cis-gem (or similar) chemotherapy, and for good reason. The chemo is the thing that we know that works for many patients, and sometimes works very well. In my mother’s case, it worked well enough for her to go from an unresectable diagnosis in September to getting the surgery just last week. Regardless, it hopefully buys time to line up the next treatment plan, whether that be a clinical trial, chemo (or radio)embolization or similar, or something else.
From where I stand, the only real reason to put off getting on the chemo would be if, as Mary noted, MD Anderson doesn’t accept patients who have started treatment elsewhere. With this cancer, it is really valuable to work with a treatment team who know the disease and deal with it routinely.
I do not believe there is any problem with getting the genomic testing done after chemo has started (although obviously check with a doctor on that). My mom got the testing done before she started her chemo using material collected from her first (failed) surgery, and we were grateful to be on the chemo while we waited for the results. They took a LONG time to come back – I’m not sure if this is how it is for most or if it was just the way the wheels turned at her particular hospital, but we waited for something like 2 months!
As Mary said, the real promise for targeted / immunotherapies is still kind of around the next corner. However, there are some therapies becoming available which can absolutely make a difference right off the bat. A few people with CCA have tumors with ‘microsatellite’ or mismatch repair instability, making them amenable to treatment with the (sometimes very effective) drug Keytruda. More patients with CCA find that they carry either the FGFR2 or IDH1 mutations, both of which open up treatment possibilities using drugs that are either just coming out on the market or which have big Phase III trials recruiting.
That term – unresectable – is a tough thing to hear, but there are people on this message board who can testify that they have found ways to live with unresectable diagnoses for years. And there are others for whom an unresectable tumor can turn into a resectable one, either due to a positive response to treatment or because they find the right surgeon.
It sounds like you’re on the right track with things, though.
Best of luck to your dad and the rest of your family-
Hannah
Hi Mary-
That is a great story about the plastic wrap, and a good reminder to keep at hand in your kitchen drawer! The surgeon’s team used something called dermabond to close her incision, so she’s got no staples and is apparently free to shower at will.
I just went back and looked at your story, and discovered that you got a central resection much like my mother’s! Here’s to skilled surgeons…
Our surgeon does not seem super-bullish about the adjuvant therapy, but we’ve been reading the data from the BILCAP study and plan to pursue this. Dr. Kelley at UCSF agreed in a pre-operative conversation that post-surgical treatment with capecitabine would be prudent. First things first, though – she’s got some liver to regrow!
-Hannah
Update!
We’re still in the hospital and likely won’t be discharged for another day or so, but the news here is too good not to share. My mom got her resection on Tuesday, and the pathology reports came back today. Clean margins on the tumor, and all 10(!) lymph nodes removed were negative for cancer. This after a failed resection in early September that found three positive nodes. Our surgeon this time around (Dr. Billingsley at OHSU) told us that he found a lot of scarring both around the tumor itself and around some of the lymph nodes, which he indicated might be residual evidence of the chemo doing its work (killing cancerous tissue, which in turn creates inflammation and eventually scarring as the body tries to clean things up). He removed about 30% of her liver as well as her gall bladder.
She’s recovering well – up and walking around and eating a few bites of this and that, although the eating is a trial and we anticipate that it will remain a steep uphill climb over the coming weeks to get her back on a normal-ish diet.
We know that there will possibly/probably be more rounds to fight in this battle, but for now we’re just over the moon.
Hi Frank-
Consider asking your doctor about gabapentin? My mom takes it to ward off the neuropathy you describe. As a useful side-benefit it has done a number on her restless leg syndrome.
Hannah
Hi Karen,
I’m new to the board as well (here as a caregiver for my mother, who was diagnosed last August). I am so sorry you have reason to be here but I hope you find it a good source of support as I have. I hope the chemo is kicking the cancer’s butt and continues to do so. It is a frightening thing to contend with, but our family are discovering that there are more treatments and much better knowledge then there was even a few years ago. If you haven’t already done so, consider having a molecular profiling test done to learn about what kinds of treatments might be available along that path.
It sounds like you’ve also already found yourself in a maze of doctor’s offices just to get to this diagnosis, but if you have the energy for it, our family are finding it really useful to solicit 2nd, 3rd, and even 4th opinions at every step of the way. It can be reassuring to get confirmation that you’re on the right treatment path, and each specialist has their own perspective and knowledge to contribute.
I’ve also found it personally helpful to read through the ‘survivor stories’ part of this message board. There is hope!
Strength and positive vibes-
Hannah
