PSA Don't be afraid to use google for (at least some) medical things

Parent Cafe
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FWIW, eating more healthy foods since her diagnosis has always been 100% mom’s idea and desire. She was diagnosed a year ago at Christmas and told she wouldn’t live to see another one, so to get her affairs in order. She started listening to stories about cancer (personal stories) and opted to eliminate most sugar from her life and add more veggies - if I recall correctly - along the lines of a ketogenic (sp?) diet. This was in addition to chemo and later, radiation. She lost weight. Her diabetes disappeared.

Summer was terrific (tumors shrank or disappeared - off chemo for a spell). Whether her diet helped or not, I’ve no idea as she’s one data point and I’m a science person. One data point is meaningless. No one eluded to her being cured, just a respite really, but a nice one.

By Sept tumors were back, so a different type of chemo was used. That one has obviously not worked (as per last Friday’s conclusion). A different one is getting tried and her biopsy is being tested for possible immunotherapy options. Mom is still interested in keeping her diet “healthy,” but with more effects on her liver (not the primary cancer), I was curious if “healthy” changed and asked the doctor for a “professional” opinion rather than her going totally off just hearsay from friends.

Talking with her last night, I found out hearsay has her taking 1 teaspoon of baking soda per day in addition to ditching most (not all) meats. She tells me she’s feeling better and some of her swelling has gone down. She was quite happy.

Again, I’ve no idea what is causing the short term benefit - it could be the placebo effect for all I know - but I enjoy seeing her happy, so I’m all for it.

It’s not any different than getting someone KFC if that’s what they want. I’m under the impression that some think I’m the lead forcing my mom to eat healthy in a desperate attempt to keep her alive. That’s nowhere near the case and never has been. We don’t even live close by (takes 8 hours by car one way to get to her place). I’ve been trying to get there for a week each month, sometimes more (obviously I’m not working full time at all this year). I will be there 100% when she needs it - her decision.

@srlilly I’m sorry to hear that you are in my mom’s position. Tons of hugs from here. Yes, my mom takes digestive enzymes too and I suspect they help. When we’re with mom we play games. Five Crowns, Quiddler, Rook, and Mexican Train are the favored choices. Her mind is still very intact and she wins her share.

This next week we’re all vacationing together. Hubby and I had set it up last year because our college boy and med school lad share Spring Break. We didn’t expect mom to still be with us. However, when she was feeling better in Jan she told us she’d like to join. (She used to travel with us often.) We expect to enjoy as much as we can of this trip - having rearranged some to ensure there’s down time always available. Our oldest son and his wife got off work to join us too. Her doctor has her medical needs planned out. We weren’t sure until now that it would all still be a “go,” but it is. We’re all really, really thankful. I don’t know that something similar can work for all, but if so, it’s just a thought.

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@Creekland - I’m sorry to hear about your mother. It sounds like you are the advocate that she needs right now.

While I’ve seen Google gone bad (“It could be cancer!!”), I am a big advocate of doing your own medical research. That, combined with mother’s intution, saved my son’s sight a while back. The pediatrician was brushing me off and telling me not to bring him in unless things didn’t change in a week or so and a late night grab of my phone googling his symptoms and the name of a medication he was on landed him in the ER with a “it will take several months before we know if we caught this in time and the damage reverses or is permanent” discussion. I shudder to think what would have happened if I’d waited as the (former) pediatrician wanted.

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@doschicos Thanks for the watermelon suggestion. Mom has already developed a love of cucumbers (telling me she didn’t know why). I will see if she’s interested in watermelon. It’s something she likes (in general). I read your post as “wouldn’t” rather than “would” so there was some natural correction there (or quick skimming reading anyway!).

I’m at school now (subbing). We’re getting ready to see how many students walk out… and hoping fervently that there aren’t any local lone lunatics waiting for the “targets” they know will be coming at 10am. (sigh) There are police around. I hope for the best at all schools today (and every day).

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"taking 1 teaspoon of baking soda per day in addition to ditching most (not all) meats. She tells me she’s feeling better and some of her swelling has gone down. "

I hadn’t heard of this and googled it (naturally!). The dose I found was one-half teaspoon in 8oz water and to check urine and saliva pH. If pH goes above 8, discontinue.

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@gouf78 Thanks! I’ll be able to share with her relatively soon. I just heard about this last one right before bed last night so didn’t google it at all (yet) TBH. Something about school this morning…

No sirens, so I’m guessing our walkout was safe. Kids who chose to do it should be returning soon. I’m in class waiting with the others - a little bit of free time.

I hope the walkout was/is safe everywhere.

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@gouf78 Where did you find your information? I’m on lunch now and so far have mainly discovered there aren’t a whole lot of scientific based things written on it - more theory than facts. Healthline has a few:

https://www.healthline.com/health/cancer/baking-soda#ph-levels

Is actual study too new for reports?

I’m not finding “proper” dosage or checking urine (I could easily get her litmus paper).

My mom’s primary tumor is esophageal. We’re not sure how she got it. She’s not male, never smoked nor been in a smoking environment from work/house/etc, and never abused alcohol - all hallmarks of who gets that type. Nonetheless, that’s what it is. But like many Stage IV cancers, it’s her liver that will seemingly end her life (or at least I was told that’s common).

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I googled baking soda and liver cancer–your results may vary. I was surprised to even see it. It was one of the many sites. I would discount it but if your mom thinks it helps her then it’s also important on the flip side to make sure it doesn’t make things worse.
There appear to be several regimens for different ailments after more googling but most have a time limit (one says six weeks only). I don’t know much about it (some claim studies but who knows?). Just better safe than sorry.

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Unfortunately sometimes even when googling brings terrifying things it can be helpful. A woman I knew had struggled with unexplained problems with her lungs and skin for a long time, saw various specialists and got various explanations. Googling her symptoms brought up lymphoma repeatedly, but she pushed it out of her mind and kept trying to deal with symptoms. When she finally got a lymphoma diagnosis, it was too late and several years later she died. Not to scare anyone, but if something is not right and you don’t have a clear explanation from your doctor, you might want to do a bit more research. Not to self-diagnose or self-medicate or anything like this, of course, but just to keep asking questions as a more assertive and educated patient.

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Consider googling milk thistle. Many studies by those with multiple letters after their names…

https://www.cancer.gov/about-cancer/treatment/cam/hp/milk-thistle-pdq

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@yucca10 I agree, but I also know one has to have a certain type of personality to keep pushing. My mom had it and her “stress” was finally diagnosed as Stage IV cancer. I know something is wrong with myself - 100% sure based upon symptoms and conversations with those similar to and older than myself to see what is “normal.” But I didn’t inherit her willingness to keep pursuing things when told it’s all in my mind. To me, doing THAT is stressful (and hey, they told me to reduce stress… I did. I quit the dr appts. Now if only the cwap would go away! Que sera, sera. It hasn’t killed me yet so I like to think the odds are more in favor of just being something uncommon and irritating rather than deadly.

@dietz199 Thanks! I should be able to share that with my mom within the next week.

To anyone who might need a separate PSA in the future. Be very aware of events going on in downtown Atlanta BEFORE deciding to try to come and see the Aquarium! Getting 8 of us here from road trips and the airport last night was an interesting sport due to St Patrick’s Day celebrations. This morning’s wake up call from the marathon going on is mildly irritating for us younger crowd, esp since most of us get up relatively early anyway, but I wish it were a couple of hours later for my mom (sigh). In hindsight I’d have chosen a different “first” destination, but my mom loves aquariums and Georgia’s is phenomenal in our experience. My mom hasn’t been here before - and doesn’t scuba dive, so has never seen mantas or whale sharks (the latter we haven’t seen diving either, but hubby and I have been to this aquarium before). Hopefully the experience will be worth it for her and tonight should be more restful. Tomorrow we move on.

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@Creekland, thinking of you and wishing your family a wonderful and memorable trip.

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@ECmotherx2 It was a good day. Considering we had never seen the start of a (half) marathon before and could see this one easily (start and finish) from our hotel room, it turned out to be an interesting experience rather than an annoyance - even for my mom. The aquarium was awesome too, but I had expected that part knowing what she (and we) like.

Assuming you’re in the south, that’s where we’re heading next - after a slight delay for another (planned) round of chemo for mom.

Off to look up the milk thistle more (than a cursory glance) now.

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I think my Mom ate mostly ice cream at the end. She said her biggest regret was that she didn’t give my Dad a Scotch and soda when he asked for one when he was dying. He hadn’t had one in years.

I read that “Diagnosis” feature regularly - it’s scary what doctors miss. And it’s not always the doctor’s fault - who thinks to look for scurvy any more? (The subject of a recent one.)

Anyway sorry you are going through this.

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Back to the original post, google definitely help me figure out a nagging issue that was quickly turning into a very serious issue. It turned out that Lipitor (a statin for high cholesterol) was causing me some shoulder issues, and neither my GP nor a shoulder specialist made the connection.

I had actually searched several times over the course of a year or two, but got really serious when I was hitting a low point as the issues were getting progressively worse and pretty serious. On the CDC website I found a couple research papers pertaining to me, the lightbulb went off, I immediately stopped the Lipitor and literally 3 weeks later after a couple years of getting progressively worse, I started feeling better.

It was a fairly rare symptom (statins causing issues with tendons) for statins, so it didn’t pop up on my initial general google searches. I actually am very grateful that I had the education and knowledge to drill down on the CDC website and decipher the research papers as I don’t think it’s something everyone would necessarily be able to do.

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Adding to the above post - to add insult to injury, I was recently chatting with a cardiologist friend of W and told him what happened. He said, “of course you should’ve stopped the Lipitor immediately. You always stop the latest medication when you develop an unexplained issue even if it doesn’t seem remotely connected.”

But being a cardiologist he then went on to badger me about getting back on medication to control my cholesterol :))

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"But being a cardiologist he then went on to badger me about getting back on medication to control my cholesterol "

Or maybe not if you keep googling…maybe he needs to do some googling also.

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When my husband was diagnosed with stage 3 esophageal cancer the internet was both a blessing and a curse. A curse because of the terrifying statistics on that particular cancer and the heartbreaking stories of suffering of the many who do not survive it. A blessing because of the wealth of information that had me educated enough to run a mile from the first oncologist we went to (I still vividly remember walking out to the car with a very defeated husband after that appointment and telling him “we’re not coming here again” - I truly believe he’d be long dead if we had not gone elsewhere). But mostly a blessing because of the truly amazing support group I found out there who gave us (well me really but it helped both of us) so much advice, guidance and support. I’m still Facebook friends with many of them - sadly more caretakers than patients as the cancer has such a high fatality. I think the group helped save both his life and certainly my sanity. It probably seems strange that people you have never met IRL can mean so much, but, however much they care, no one really understands what you are going through as well as people who have gone through the same.

So like I said - googling was a blessing and a curse. I was terrified and distraught at first because of what I learned about the disease. But being able to learn about it and get advice from others was just priceless.

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^^ I had that conversation with him, explaining how I have zero family history of heart disease, exercise regularly, normal blood pressure, etc, and no other risk factors (I’m 6’1” and 160 lbs so not overweight in the slightest). But he was insistent that high cholesterol all by itself was a significant risk factor, contrary to many articles I’ve read. However I’m a layman and he’s a university instructor with clinical experience, so I was certainly willing to hear his opinion.

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" I’m a layman and he’s a university instructor with clinical experience, so I was certainly willing to hear his opinion"

I’ve often wondered how different my views would be on many topics without having a medical background and years of experience. Right now I take most everything I hear with many grains of liberal salt. But I (try) listen close. Basic medical knowledge and knowing the “workings of hospitals” has saved much angst over many years.

I try not to let my education get in the way of learning or accepting new ideas.

Knowledge comes from so many fields. Nursing, pharmacists, physical therapists, just about everybody. And patients.