Starting Chemo March 2015

Jackbirdie

Lee- a very Happy Birthday to your husband, who I know has been a great support to you along with your friends. You are very special and I know you have added a lot of magic to the bracelet. Pictures, please?

neverthought

Easy calming web site: www.calm.com. Good if you work at a PC and can use headphones or shut your office door. Allows you to select amount of time and/or guided meditation.

When in stressful situation count to 100 then start over. Or repeat prayer or bible verse. This helps me get through five minutes at a time when in dental chair, MRI machine or other situation where I can't do anything else but endure.

Alternate nostril breathing combined with abdominal breathing.

For count of 8 cover one nostril with finger and breath in with other while slowly expanding your abdomen and chest, raise shoulders, start with expanding abdomen and move up to chest and shoulders.

Cover both nostrils for count of 8. uncover opposite nostril and exhale through other nostril for count of 8 while letting shoulders fall and pull in abdominal muscles.

Repeat on other side.

Usually three cycles is enough to slow my heart rate and quiet my mind. This url may help: http://hathayoga.com/alternate-nostril-breathing/. Sorry it doesn't explain abdominal breathing but WebMD describes that part here: http://www.webmd.com/balance/stress-management/tc/belly-breathing-diaphragmatic-breathing-topic-overview.

Comments from NIH: https://nccih.nih.gov/health/stress/relaxation.htm.

Hope this may be of help to someone. Wish some of these techniques were taught at start of treatment so patients would have something to turn to in addition to drugs.

Jackbirdie

Never- that's great stuff. We have done the nostril breathing in my granny chair yoga class. I like it.

Re: wishing they taught us some of these skills. That is such a good idea. When I had my dumbass survivorship meeting, I complained bitterly that the "system" has been willing to pay over $200k and counting, for surgery and treatment, yet can't spare a couple thou for some cancer therapy? WTF? Teaching your skills above would probably reduce drug costs (Ativan, Ambien, etc ) by a lot. But alas, those drugs are very cheap to produce and therapy is by comparison expentive. But a drop in the bucket compared to the whole cost if tx. Appalling.

DavisD

Katy and Neverthought-thank you for the suggestions. I'm willing to try anything to get through these next few months. Hubby has a job for about thirty more days then I'm not sure what will happen. Without a steady income I can't afford to keep the house so I'm just going to trust he will find something with my support. He's worked for the same family for over 30 years but no retirement...I need to just focus on keeping my sanity and my career whatever happens. So glad I have you all!

I agree with your point Katy. Teaching these techniques would be such a helpful part of treatment. Instead of always treating symptoms as they happen, doesn't it make sense to prevent illness and negative symptoms?? I know it isn't profitable but I think people are beginning to question the money spent on healthcare in America and are we really better off? Just seems so fractured, I have to say I'm discouraged. Being your own best advocate is the way to go but when you're down a rabbit hole it can be quite hard. (Excuse the rant, just reread it and it doesn't really make much sense but you get my point right?)

Lee-Have a wonderful birthday celebration with your DH!

Jackbirdie

D- makes sense. Not a rant.

DavisD

Sharon-I've been thinking of you and wondering...literally with the rabbits? I don't think so but wanted to check. How are you doing with the new diagnosis of RA and did they start you on something for it? Thinking of my horse sista on this rainy day:)

Italychick

Diane, I don't do it now (life is too busy) but I used to go to a gentle yoga class and that was very calming. For me, it had to be the right class though. The woman I loved used chimes and bongs, and at the end of class she sang a song comprised of a bunch of Indian words and the word Shanti, which I think means peace. By the end of the class, I felt like a tub of jello, relaxed, calm, etc. plus it got me out and in an atmosphere with other people which is always a good thing.

The other thing I try to do when the spiders enter my brain is go through all my blessings, focus on all the positives in my life. Things like I can walk, I have arms and legs, I have wonderful people around me, all kinds of corny stuff. It may not work for others, but it does for me.

Also, SpecialK posted on a forum about practicing mindfulness which struck a deep chord inside of me. Be in the moment, even if it as simple as washing dishes and feeling the texture of soap bubbles. My husband and I do several walks a day, especially a short one every morning, and I look at tree leaves, flowers, bees, hummingbirds and marvel at what a miracle just being alive is. It is easy in our hectic world to overlook the everyday miracles around us, and slowing down and observing fills me with a sense of wonder. How am I here? How is it possible? How can a hummingbird flap its wings so fast and live on nectar?

Having a nonjudgmental support group, even if it is only one person, is huge. I have Cheryl. We can ride bikes and talk about anything. If I want to obsess about my testing (like I did yesterday on our ride about my mammogram) she just listens. And then we switch to mundane things, like how beautiful the ocean is, etc. I voice my worries, then allow myself to pass on by it.

I know it isn't easy, but these are some of the corny ways I keep my sanity. Gentle hugs to you and avmom and anybody else struggling mentally. I hope for each of us that one day all this treatment and worry is in the past and we can move on

eheinrich

I can't remember if Whitney posted this here or just on fb. So here it is - absurdity and cluelessness at it's finest. Outraged? I think a barrage of comments on their fb page and letters to their corporate office are in order.

jerks.....

Jackbirdie

E- Jerks indeed. Appallingly insensitive. I just posted right behind you on their Facebook page. And liked your post and commented on it too. Whitney says they did this last year and issued an apology. Ordinarily consumers have that short of a memory, I guess. Pink washing has gotten so bad I think most companies feel like they can't be the only ones who don't do it.

http://thinkbeforeyoupink.org/before-you-buy/

DavisD

Theresa-thanks for the wonderful suggestions. The "count your blessings" is not corny at all and is what gets me through a lot of tough times. I think about what I still have instead of focusing on what I've lost over the past five years. I have several good friends that I can share most things with, I guess I've always been a bit guarded about exposing my fears...much more comfortable being the support person. This forum has allowed me to share without the face to face interactions, I hope I haven't portrayed myself as being on the verge of a mental breakdown, ha...not yet anyway! I do appreciate the thoughtful response. I'm looking into the gentle yoga through the Life with Cancer program.

Eileen-I always liked Ulta but that's outrageous!!! What are they thinking??

Trvler

I agree with Diane. I think it is great advice.

Sloth: I loved your post about us all being together for 10 months now.

I think the meditation stuff gets easier the more you do it. I am bummed because they moved the time of my favorite class and now I can't really do it. I am going to check out Calm.com.

jumbledbamboo

Never, thank you!

Katy- I go Monday for Surgery and I go Friday for my neuro opth appointment.

I agree that therapy needs to be an option offered at the forefront. It has never been offered to me at all.

Jackbirdie

Amber- that's pretty quick up and out of bed for that Friday appt. will be thinking of you and sending you strength.

Jackbirdie

Here's some Saturday Tutti

Just couldn't resist.

TerryMarie

Hi all, its been ages since my last post. I'm 8 weeks past my last radiation, getting herceptin every 3 wks until March of next yr. I feel pretty much back to normal, although I have lingering side effects from the bastard docetaxel ..neuropathy in fingers and toes, which is abating somewhat, dry eyes still but my vision is improving slightly. I still get tired easily but my overall mood is way better now. Radiation for me was okay until the last week , my breast was so red and weepy, I actually had to cut up baby blankets into swaths and keep it under the breast all day, I had to change that 2 or 3 times, a nurse told me to do that, because the material is soft and wouldnt stick to the breast. The leeching of the yeast like substance finally stopped about 3 wks after rad. They tell you not to wear a bra but I started to wear one and when I did I found the breast healed faster. I wore a sports bra night and day and put the cloth between the skin and the bra and found it helped big time. The breast being supported helped a lot. So now for me its just the herceptin until Feb when I'm scheduled for my next mammogram. Oh and I started 5 yrs of taking Anastrozole.

I hope everyone is coping well, after awhile you truly do feel like you did before this all began. Oh and I have hair! I stopped wearing scarfs and wigs and I'm going with the buzz cut look, and since my eyelashes finally grew back I can wear some mascara and attempt to gild the lilly! Only setback was , I got a pedicure for the first time in a year and a week later my big toenail fell off.

Aw well.

DavisD

Feeling so much better today! It's amazing how differently life looks when the pain has lessened. I'm not sure if this flare is just passing or the small dose of Neurontin has contributed to reducing the nerve pain...on an unrelated note, a friend told me about some research - subjects eating 2 TBSP of coconut oil per day showing improvements in dementia symptoms. I thought since we're all a fan for many reasons, why not make it part of my diet? I've been eating two pieces of multi grain toast with the recommended amount of coconut oil every day for about four days and it tastes great! I'm sure it's too early to make a difference but she did say the improvements stopped when the daily intake stopped. Interesting regardless. Kind of a win win so I'm going to keep it as part of my routine.

Theresa-I know you can only give your personal advise. I wondered if you've ran across any kind of supplements that have shown to have some effect on long term nerve pain? I've tried Lions Mane or something like that several years ago. didn't stay with it because of the expense and I wasn't sure it was helping. I think I'm at a point I'd like to try something again. Any suggestions would as always be appreciated

Katy-Tutti rocks! and so do you. I'm lovin the mask. It took a couple nights to get adjusted to the weight but now it feels very comforting and has helped tremendously. Unfortunately I forgot to turn off my alarm on my phone so woke up at 6am when I might has slept a full 8 hrs!!! Can't thank you enough.

Raining here again. Hope everyone is having a great weekend!

DavisD

TerryMarie-good to hear from someone a little ahead of me in tx. I'm about two weeks post radiation and had some really negative effects the last week and a half as well. Finally getting better, just some lingering nerve pain around the breast. I am also on Herceptin until March, doesn't seem to be causing problems but I'm never really certain. Do they attribute the neuropathy to Taxotere and is it supposed to go away with time? Sorry about the toenail, sounds painful. I had a pedicure last weekend and I just had them avoid the ingrown nails on both big toes...ouch. the podiatrist said it was a result of the damn taxotere and should get better with time. I wish I would have heard your suggestion regarding wearing a sports bra...they told me not to and it was difficult finding clothes I could wear that were soft/not irritating to the angry breast. I'm past the weeping and scabbing now thank goodness! Hope you continue to heal and enjoy life

Italychick

Diane, my comment about chronic pain is purely my personal opinion. Haha, I got my disclaimer out there. I have researched low dose naltrexone a ton, and have been in dialogs with a woman in New York who used it for multiple sclerosis and myasthenia gravis, and she now has no detectable amount of either disease in her body. My son in law was just diagnosed with mild Crohn's disease and ankylosing spondylitis and we consulted with our family doctor and got him to prescribe it for Crohns and the spondylitis for eight weeks. Low dose naltrexone is 3.0-4.5 mg. per day, taken between 9 pm and midnight. The way it supposedly works is at a low dose it reduces chronic inflammation in your body, and gives your immune system a chance to become stronger so it can deal with fighting systemic inflammatory diseases. Since it reduces inflammation, your immune system doesn't have to use its resources fighting your inflammation, and it can potentially get stronger. There are a lot of scare stories out there about it, but those are when you take 50 mg per day which can be hard on the liver. The scare stories are usually from somebody who got the 50 mg pills and tried to break them down on their own so they got in exact doses of the drug. It hits opioids receptors so it makes any opioids worthless, so if you take any opioids it will render them ineffective. They use it for recovering drug addicts in large doses.


The side effect of it is it raises endorphin levels, so when you first start it, people can have really vivid dreams. At such a low dose, there doesn't appear to be any toxicity to it. You would know within a few weeks if it is doing anything for you, but improvements may be slight.


If you have a physician prescribe it, you need to go to a compounding pharmacy to have it made for you. The advantage of that is it is pure and doesn't have a bunch of fillers added to it. Penn State did a trial on it with pediatric children with Crohn's disease.


That's the best thought I have for something with low or no toxicity. And as I said, it is an off label use of the substance, so there isn't a lot of trial data out there for it since there isn't a lot of money to be made using it as such a low dose. The cost is about $50 per month, but you may be able to find it cheaper. Skipspharmacy.com in Florida is supposed to be expert in the usage of it, and I was told by my New York friend that they are super helpful in answering questions.


Other than that, I take fish oil to reduce systemic inflammation. I figure it can't hurt, although it can thin the blood, so if you have issues clotting just research first. Meaning it reduces the clotting factor.


Benfotiamine also works for me. I do not take low dose naltrexone because I haven't needed it.

TerryMarie

Diane, my doc said the neuropathy was down to the docetaxel and it should improve over time, right now it's not as bad as it was before. The toenail falling off was surprisingly not painful but now Im worried about the rest of them. My fingernails are soft and are tearing easily but that will improve. And yes, the sports bra is perfect, I still wear them but i no longer need to sleep with one on. They are light and not binding , I'm wearing roomy ones to be comfortable. I do also have nerve pain in the breast , feels like a random stabbing pain but that is also not as bad as it was. It all gets better! Good luck and I hope you continue to heal nicely.

DavisD

I'm so glad I asked you Theresa! I read an article in one of those health store magazines a couple years ago about naltrexone being used for autoimmune diseases. I hadn't been officially diagnosed with Sjogren's yet so I didn't pursue it. I have an upcoming appointment with my wonderful rheumatologist and I think I'll discuss it with her. You are terrific and I understand it is only your opinion but I greatly appreciate your thoughtful response!

Italychick

No problem at all. Your rheumatologist may be resistant, so you may need to talk to a naturopath or a family doctor. I always go in with the approach that if it won't harm me, let me try it, because it could only help. And I am really pushy lol. Like 5 years ago I had an out of control blood sugar out of the blue (450!) after I took Levaquin (also messed up my tendons in my ankles for about a year), and they wanted me to take diabetic medication (metformin). I said no, I want to try to resolve it systemically first, what do I do. The doctor said lose weight, quit being a fat ass, cut out processed carbs, and add moderate exercise. My family doctor has a dry sense of humor, and he tells it straight haha. And I did what he told me, and within three weeks my blood sugar fell to normal ranges, and has been there ever since, even through all the chemo steroids, etc. which can drive blood sugar up.

The rheumatologist wanted my son in law to go on Humira for the Crohn's disease, which is a drug with tons of terrible side effects, low white blood cell counts, etc. And he has two toddlers! The family doctor said that was overkill, and he needed to lose weight, change his diet, add some moderate exercise, and his conditions should resolve. But he prescribed the low dose naltrexone because he is very interested in seeing whether the low dose naltrexone works because he said he has many other patients that can benefit if it does.

What is your vitamin D level? By the way, I have demystified somewhat the vitamin D supplementation can harm you claims. Apparently if your calcium is in the 10's, like 10.2, etc., you have to take K2 for a few weeks before starting D3 supplementation because D3 can drive calcium up higher if you don't get K2 in your system first. For whatever that is worth.

Again, disclaimers lol. My experiences are personal to me, my husband, my children, so what works for one may not work for others.

Jackbirdie

Theresa- I have learned so much from you, and appreciate being able to eavesdrop on these conversations with your pcp. Haha. Knowing you has changed the way I think quite a bit, and I feel like less of a victim if I at least try something. Thank you.

Italychick

No worries, Katy. Interestingly, I have come to believe that inflammation is the root of all evil. At one point, I had high cholesterol, probably still do, but I'm not getting that measured until I am sure all chemo is gone because I have heard it can cause some scary cholesterol numbers to show up. My doctor tried to write me a prescription for a statin. I said no, my grandma and mom have allergic reactions to it, I'm not taking it. So what do I do? He said okay, then let's talk. Then he walked me through the cholesterol thing. He told me that cholesterol goes high because with systemic inflammation, the blood vessels get compromised and leak tiny microscopic amounts of blood through little tears in the blood vessels. So then cholesterol goes hey, wtf, and rushes in to try to repair all the tiny tears in the blood vessels. Said there is current ongoing research to try to find things better than statins, but is still a work in progress. So again, his recommendation to me is, do whatever I can to reduce systemic inflammation. Which I have worked hard on with diet and moderate exercise. Pre-chemo, I had been able to get my good cholesterol number up to 75, which shocked the crap out of me!

I know it sounds like my exercise isn't moderate because of the amount I do, but when I mean moderate, I do things at a pace so that when I'm done I have an endorphin high and a general sense of well being as opposed to being exhausted. I just took a friend out (she just started riding again) and I made her ride at a reasonable pace. She was shocked, said she felt great, and now she is home cleaning her whole house lol.

So for me, I have come to believe that avoiding eating what I call methyl ethyl bad shit (processed crap food) and engaging in exercise that leaves me feeling happy afterwards, and losing weight is a huge deal. But surprisingly, the weight loss isn't the most important part. Diet and the right exercise help me more than anything. Right now I am 5'8" and weigh 180 pounds to give you an idea. Shhh, don't tell my husband! Yep, still fat, damn chemo.

Jackbirdie

T- I absolutely agree. I've been reading a lot about inflammation and connecting the dots on various maladies in my medical history. I am convinced it has played a part. A big part. Possibly even allowing cancer to get a foothold. My diet has changed a lot. I'm still struggling with exercise, though I know how important it is.

Because I was in such poor shape from a lung hospitalization last year and being on home oxygen for months, ending just months before BMX surgery, I was in the worst shape of my life at dx. Chemo on top of that. I'm still at the point where exercise, due to such a lack of core strength, hurts. I have started at such a basic level it's embarrassing and discouraging. I haven't yet gotten to the point of an endorphin high. I miss that. I'm not trying to make excuses, instead trying to reaffirm my desire and to be understanding of a self that has to build on blocks so small I can barely see them. I'm sure nobody else can either. I'm hoping by the time we are together next year I will be able to participate on hikes, and maybe even a bike ride. For now, still counting steps and noticed today it was easier for me to get out of my new bathtub. I was proud of that. Sounds ridiculous, but that's where I am.

Italychick

Katy, I hear you. Listen, 5 years ago, I couldn't walk more than a few miles (and they had to be flat), and I fought back to exercise step by painful step. I started with walks around the neighborhood, then a little more, then a little more. And that was with no surgeries or anything like you have been through. Never apologize for what you can and can't do, dammit! Just stop that! No disclaimers or self-deprecating comments allowed anymore, okay? The point is you are "doing", which is more than most of the U.S. does.

Exercise aside, I really feel diet is key. Garbage in equals garbage out. And you are preparing wonderful garden grown food for yourself, and seem to be really keyed into the diet thing. I really think diet is more important even than exercise, although it all helps.

My osteopath said people go too nuts over exercise. Just walk half an hour to an hour a day, that's all you need. And he's probably right!

See, I'm never gonna let you beat yourself up! I will kick your ass if I see you doing that!

Hugs, and love you!

Did I mention I went to Starbucks today and drank caffeinated coffee? Lol. I'm a spaz right now.

Jackbirdie

Thanks. Sniff. Love you too.

Italychick

Trvler

I was watching a PBS thing last night about metabolism and it was interesting. I didn't watch the entire sales pitch but a lot of the discussion made sense. I think the program is Fast Metabolism or something like that? Anyone heard of it?

eheinrich

My PhD work was on the link between inflammation & lung cancer.

jumbledbamboo

I am likely going to have to change my appointment day. I can't seem to find anyone to drive me. My husband has no time but is always scheduled for Mondays off. So I will shoot for that.