Fuzzy's Romp Room

Wren44

SAS, To monitor BP, should I do it in the am, pm, or noon? I take BP meds 2 x day.

sas-schatzi

Wren, there are multiple approaches. The baseline BP is most often recommended to be done in the Am after waking and using the bathroom. Why bathroom? Can change BP in some when they need to go LOL.  Also, take before meds. This will show what the BP control is at the lower bloodlevel of the meds. Some BP meds are sensitive to timing. One in particular that comes to mind is Capoten. For a drug that is to sensitive to timing, if you have a written record, the doc can look at it, and may want to consider a different drug if trends show that. The ideal is that everything occurs at the same time everyday. The reality is that it doesn't. S0, the best agent is a drug that isn't highly sensitive to being taken at the same hour everyday. Bp meds or any heart related med should be taken as close as possible at the same time daily. As I write this, I just took my Am meds late. 1:30. UGH. eVEN WITH A MED PLANNER, we can forget. Had this happened with Capoten by now I would have had a rebound effect(BP shooting up). Capoten orally is not used much anymore b/c of this.

You could take your BP before your 2nd dose of the day for say 2 weeks. Record. This would show you the trends. At that point you could discontinue the Bp check before 2nd dose. Also, you could take your bp during that time half way through the day from first to second dose. That would show the trend of midway. With some this may show that they actually get too low. This would allow a dose adjustment when used with the am, 1/2 way through day, and before last dose of day data.

The American Heart Association established target numbers for BP control with medicine several years ago. The target for the systolic(top) number was 110. (VEGGY your perfect). This number is nice , but with meds sometimes trying to get this number it ends up that the BP goes to low. Low is not always better. Many can be symptomatic with even 110. Certainly symptomatic the closer the number gets to 100 or below. Symptoms weakness, lightheadedness, fatigue, positional change--moving at normal speed from laying to standing, laying to sitting, sitting to standing. Positional change symptoms include lightheadedness to completely passing out.

So, monitoring BP and recording symptoms is real good for any new medicine or condition change until you see how your doing. Added weight for completeness. Good standard approach.

Chart         weight               BP,      p,            body position(laying,sitting,standing)            symptoms

date/time________________________________________________________________________________-1/3/13-6a     120                 120/80   80           sit                                                               none

  1/4/316a    125                  160/100 110           sit                                                              short of breath

in the example: it's obvious something is wrong, that's how recording helps. It's like Gibbs on NCIS slapping Dinozo on the back of the head.

Random thoughts on taking BP. 1. Activity-baseline taken at rest, may repeat after activity to evaluate exercise tolerance.   2.positioning of arm--have arm at side hanging down straight from shoulder. When arm is elevated above heart level you will get a lower reading. The example I always use is a garden hose --if you raise the hose end above the tap level, the water pressure at the end of the hose decreases. Same with BP. Signifcant change in some people to no change in others. In demonstrating this one time there was a difference of 65 points--that's significant. This is the MOST poorly understood and taught concept of BP checking. You see staff putting the arm on their hip, or up on the bedrail. Generally, I usually have seen an average of 30 points when teaching this. Still very significant, when info is used to determine treatment. 3.cuff positioning-use of forearm okay(research early 80's), key is to put device over the artery where arrow points. 4.legs uncrossed--this made it into the teaching and is almost universally followed, but it was based on bad research(Details left out).

thefuzzylemon

Wow....Sassy/Linda....we are in good hands!!!

GG &Dunes....you are totally free to post - no matter what. You may feel like your drowning and pulling down the people trying to help...but you're not. Just typing out your feelings is good therapy. Do not stop. You are beautiful people and we are sisters. GG, I hope those tears are cleansing. There's a significant chemical reaction that happens when we cry...if you get to cry everyday, try to "experience " it. Im not fortunate enough to be able to cry as often as I should...but you know what I mean, right? That feeling that happens during and after such strong emotions?

Speaking of which...I had my group therapy yesterday....im pretty sure I am helpless...I don't think anyone can help me with my troubles and im going to let them know exactly That and see what they say....nothing to lose, right?

ridergirl

Ok so bloodwork yesterday, chemo tomorrow, and just this aft got a call from my RO to talk about my MRI results. Apparently there is a large cancer in both hips, right worse than left, so now I go next week for x-rays and to see a bone specialist to discuss surgery to put rods in there to keep them from breaking!!! WTF where did all this come from. If he decides no surgery then sounds like they'll want me to have radiation on hips. WTF again!!! So right now a llittle confused, worried and mostly pissed off. Pretty well made up my mind a while ago no surgeries but now not sure. Sounds like the hips may break eventually if I don't , then does that mean I'll have to have surgery then anyway?

Any thoughts or anybody with experience with this type of surgery, recovery etc please let me know what u all think

Love u sistas!!!

thefuzzylemon

Rider....holy shit girl!! Glad this is discovered though. I have not experienced this but, as a friend and sista, I hope I can give you my thoughts....I read your post a few times to "feel it". I feel that this is something no one would expect or predict so when you said you wouldn't have surgery again, it was referencing something else. Maybe we could take that off the table and weigh benefits and risks. If you have surgery now, you may be much better positioned for healing. If you wait until they break on their own, you face surgery and other possible complications that come with broken bones. Now, you may know about 9,000 other risks & benefits and of course I'm for whatever you decide. I'm in favor (at this time) of having the procedure. Wow...you've got so much on your plate. I love you and I hope that didn't seem to strong.

Linda-n3

Rider, are you getting any of the bisphosphanates or bone-building drugs used for osteoporosis? They have been used with breast cancer - may reduce some bone mets, certainly helps with bone pathology... I think Zometa? may have been used.... I can't remember off the top of my head, but that is something else to consider if they haven't already.



That drowning and flailing and dragging everyone else in. Yes, I really get that feeling! I try so hard to stay positive and focused, try not to be that whiny complainer that no one wants to come visit, and succeed with most people except those closest to me, mainly DH and my one sister. The emotional roller coaster is tough on us, and sometimes tougher on those around us. I had a near-meltdown today after I had already been through biopsy and stopping by to pick up script from PCPs office, turned it in to the pharmacy and was waiting for it. 20 minutes later they had filled one, told me the other couldn't be filled until tomorrow as it had only been 28 days and the script is for 30 days.... I had to drive 45 minutes into the clinic, another 45 minutes home, and I sure as heck didn't want to do that drive again tomorrow. Hence near-meltdown. But the supervising pharmacist made a couple phone calls, got it OKd to fill a day early. Nice man. Am glad I didn't have complete wackadoodle temper tantrum-type meltdown!



Sassy, which chemo drugs are you wanting to list? There are about a gazillion of them, more every day! Not all are for breast cancer though. I can get you a list of cytotoxic, hormonal, and targeted therapies for breast cancer in a fairly concise form if you want. May take me a few days.... you know how I am with these "assignments" - I get enthusiastic about it, then get pooped out and then beat myself up for not keeping promises.... but I think this is one I can handle, LOL!



I know I should go for a walk right now, the weather is clear and brisk. My arm is demanding attention (local anesthesia from the biopsy has worn off!), and my watercolors are calling me. That little devil sitting on my left shoulder is whispering in my ear and is sure to win out - walking with arms swinging to keep warm just isn't going to happen today!

Anonymous

I got the zometa (bone building) yesterday. Its worse than the chemo. It makes every bone in my body hurt. They usually give it in 15 minutes but I requested they give it me in 30 minutes. Now I only have a dull ache.

Stomach feels raw. I didn't feel like eating dinner so I had pie and ice cream. Not the best choice but the ice cream made me feel a little better. Cancer sucks!

ridergirl

Veggy if pie and ice cream works for you, enjoy it!  My theory at this point is that whatever I feel like eating is better for me than eating nothing, and my home care nurse agrees. She said chips, chocolate, whatever I feel like, it all has calories in it so its all good!

I get pamidronate, which is similar to Zometa, in purpose at least, but I don't really find it gives me any negative effects.

Anonymous

I am really trying to eat better but the two days after Zometa, forget it. Ice cram and yogurt are the most soothing. I am trying to make myself ldevelope a taste for greek yogurt since it has more protein in it. I end up putting blueberries and honey in it. I just can't swallow that 12 grain bread, it tastes like sawbust.

Today I was a bum. All I did was talk my son through making chilli. Tomorrow might be a better day. I might even feel like smiling.

Hugs to all!

SherylB

veggy,

I am not a big fan of yogurt but found I really like the greek yogurt Fage especially the cherry pomegranete.

Try it, Sheryl

Linda-Ranching-in-the-mTns

When I was caretaking Dad during chemo/rad for esophogeal cancer -- "Ensure" was his best friend. The butter-pecan and vanilla were his favorites -- they taste like a milk shake, and you still get 9-12 g of protein... and other good vitamins/minerals. Mom preferred the taste of 'Boost' -- but both are pretty tasty.

Dad's oncologist said that Dad was in the top 5% most successful of all the patients he had ever worked with -- and told us that keeping nutrition high while on chemo/rads is what will make or break your experience. People who lose weight on chemo/rads do the worst with recurrance... People who maintain their original weight and continue to get some exercise will do the best.

So Veggy (and ridergirl)-- by all means enjoy whatever foods you can -- and eat all the ice cream you want -- but you might try some Ensure, too -- because all calories are not created equal, and your body needs extra protein now to heal and build new cells...

All my best, 

Linda

thefuzzylemon

Veggy...I'm inspired. I think I need pecan pie for dinner!! Thank you for that: )

OMG. Bone pain is so terrible. Can they extend it out even further? Like 45 minutes?

Veggy, Rider...big hugs. I'd make you both a gorgeous chocolate/chocolate chip cake with your favorite frosting for dinner...ice cream on the side...stiff drink for dessert!!!

thefuzzylemon

Linda....really Good stuff!!! Wow...I love learning. My youngest daughter really likes Boost...she uses it for the protein (athlete) so it must taste pretty good!

Anonymous

I have tried both Boost and Ensure. Could not tolerate the taste. Usually 1 or 2 days after recieving the zometa I eat whatever makes me feel better. Chemo (abraxane) doesn't affect me as bad. I crave soup, usually chicken or minestrone. I make it myself the day before and load it with spinach.

I've lost track with my water intake but I think I am very close to drinking a gallon.

thefuzzylemon

Veggy....as bad as this sucks, you really are doing everything you can and it makes me tear up. You pre-prepare?? That's wonderful. Kick ass.

Delilahbear

Dogeyed - hope your arm is feeling better. You are really having a rough time. The falling bit would be worrying as I have been doing the same thing and going to an ENT in Feb. I hope you did not injure your arm or rotator cuff in your trip on the porch or stairs (can't remember which you said or was it both). When I injured my rotator cuff I had mid arm pain as well as shoulder pain. Take care of yourself. Hope you can get your rest. Do set up your bills on auto pay. It relieves the stress of having to write the checks on a certain date. Thinking of you.

Hugs to all and Happy New Year.

thefuzzylemon

That is so sweet....GG, I hope you read this soon....we are all thinking of you...sending you love....I'm wishing for your mind to clear, pain to be controlled and time for you to heal properly. Please don't feel like you have to post...until you're ready of course. You call me if you like ok?

Del...you're super sweet.

SpecialK

dogeyed - what fuzzy said...

rider - crappity crap - I vote for the surgery now too.  I would be worried about a new and different problem croping up if you wait until they (it) break(s)

thefuzzylemon

Hey Special!! How ya doing?

Sassy, Linda...got a problem here...I'm nauseous everyday. Is it because of the pain meds? I really don't understand it. I didn't have this before my recent surgery & complications...could it still be from That? Also...why oh why is this pain in the surgery foob area still terrible? I have significant shooting pains that are not getting better...and seems worse at Night. Any thoughts? I really don't want my doc telling me I exaggerate so I thought I'd check with my sistas! If anyone has thoughts....please oh please share!

SpecialK

fuzzy - I am good, sorry you are still having problems!  Had 2nd post-op with Mr. PS today - all is good, but I am totally over wearing Spanx 24/7!  Gotta do it until Valentine's Day - ugh, but that is a minor problem and not worth whining about!  All I can say is it is rather comedic trying to get Spanx off in a hurry when you have to pee!

thefuzzylemon

LOL!! I bet that's a challenge!!! Im soooooo glad you're at the end of surgeries (if I remember right...). I don't know anyone who's had a road like yours!! I'd wear those spanx loud and proud!!! Well, if there's a way to do that!

SpecialK

fuzzy - I could start wearing them on the outside of my clothes......  I have a sneaking suspicion that this is not the end of the road for me - I may need one more fat graft, but this was super easy and a great result, so I would definitely do it again.  If it is possible to have a positive surgery, that is what this was.

ridergirl

Going to bed...still pissed but thanks for all your support ladies.....off to chemo in the am..... F()* this!!!

sas-schatzi

Rider & veggy--calorie packing and ChrissyB, infusion length 15>30

Rider just sucks bigtime damn cancer. ChrissyB had total knees or one knee done this past summer. She has bone mets, but not in her knees(I think--forget). She would be great to talk with about surgery. She would not mind a PM at all.

Veggy, there are soooooooo many drugs if the infusion rate(delivery time) were slowed down as you asked re:Zometa, the drug would be much more tolerable. If I ever saw this happen with one patient , I automatically transferred it to others, by questioning what they were experiencing. Pharmacy pre labelled all meds with a delivery rate, but can be altered in many cases. Rare infusions need exact time, your not on them.

Veggy -the Sherlock Holmes question for your doc is "I'm drinking between 3000 and 4000cc per day and my sodium level is high--Why?" That is the question my dear Watson. Reason: the fluid dynamics and electrolyte(sodium) number contradict one another. SOOOOOOOOooooooo, there has to be an unknown reason. Now if your sodium number is normal next week----it was the ham LOL,  and all our high level deduction was for naught.

Rider and Veggy--there is a concept called Calorie Packing. I first heard of it with athletes. I used concept for my homecare patients(1991-92) with poor appetites.  Take your favorite high calorie, high carb, high protein, high fat, --ice cream. Seem to remember Ben and Jerry's was up there. You'd be surprized when you read labels. ADD that to the high calorie Boost/ensure/generic supplement.(Ensure& generic storebrand--come in 220 and 360 calories).  Put in blender with a bit of ice and make one of the most sinfully good milkshakes that can be up to and greater than 1000 calories in 8 ounces. Throw in whatever makes you happy.

Linda-n--chemo's that elevate sodium, an unavailable source said there was a list of seven, will try to locate author& booktitle.  Meltdown----had a couple in I think June(?), very uncharacteristic. Just yelled at folks and said what I was thinking. MH counselor said I finally reached the --Anger phase of grieving.

Linda_Ranch--whoot whoot--thanks, your words reminded me of Calorie packing for veggy and rider.

Fuzzy, yep were nuts, see what they do with that

Chevy, ugh had a manicure, second time ever, they burned the skin with the removal stuff, then she took the skin off in several places with the multicustomer use emory board. Hands tight, red itchy, cracking, burning.  NEVER NEVER again. Allergic to all topical antibx's. Making Derm appointment. This nail place is highly respected with huge volume of customers. One spot starting to look like a streptococcal infection. Been there done that, there awful.    Your eczema any better?

sas-schatzi

Fuzzy, what meds are you on? There's a thread on pain post op will see if I can find--Here's one

http://community.breastcancer.org/forum/136/topic/747016?page=31#idx_904

Chevyboy

Yes Sassy, thank you!  When I wash dishes...(yes, still in a sink...)  I put a cap-ful of bleach in the sinkfull of water, with luke-warm water.  But my fingers have quit cracking and peeling!  I WAS wearing bandages on them during the day.... If I keep them "soft" the air doesn't dry them out.  I still take one 20 mg Prednisone a day.... but I can't believe after 8 months, they are finally better.

Some women are really allergic not only to the liquid they use, but the remover, and maybe their "boards" and utensils are not exactly clean.  The smell is enough to kill you.... some wear those masks.   I've done my own, years ago...but I gave away all of my nail stuff.   If you are going anywhere special, you can just buy those little kits, and glue them on yourself.  The nails lift off soon enough anyway.  That glue hasn't really ever hurt my nails.... it's the acrylic liquid, and powder, and when they buff your own nail bed before they lay the "primer" and liquid down.

I'm always impressed at your knowledge in the medical field.... thanks, for all of us.

sas-schatzi

Veggy, the little google googlers worked over night, I love it when they do that. Much more has come up re:hypernatremia.

Still need to know all your drugs.I have access to an amazing drug checker. It's how I found out about why I failed chemo and AI's. All interacted with my Norvasc--BP med. I was pissed. No one did a drug interaction check. I use Genelex-genemdrx, it's apay service. So, post or pm list and I will plug them in chickie-poo.

I will keep adding to the sodium connections here if something looks good. You then can scan to see what interests you.

http://chemocare.com/chemotherapy/side-effects/hypernatremia-high-sodium.aspx

sas-schatzi

Chevy, helloooooo , first the story, please, behind "chevyboy". Chevy do you think it's the higher level of chlorine that's helped?  My guess is you will say the solution & prednisone& moisturizing. I would entirely agree. The tubbing without the after skin care is REALLY drying. Shall we call your treatment "sinking" LOL, it works. We'll know what your doing.

One thing the tub bleach articles stressed was that the bleach recommended for a standard tub, was basically, the same concentration as a public swimming pool. I think that was added so folks would be able to compare and not worry that it was real high. In 2009 after the pediatric article came out, there were a slew of non- scientific articles that were from all sources, that held that this treatment was akin to abuse to these children in the study.

At first when I did the tubbing for a mostly a lower extremity "whatever skin thingy" that just like your hands the derm doc could not give a definitive Name, my measurement was off b/c I have a garden tub versus a standard tub. Upped the amount and it worked like a charm. Later worked again when I had a resistant external yeast infection. Too much Keflex over years, especially in 2009 with the four BMX/recon sx's.  The cholrine tubbing worked after the standard treatments failed.

You have been on predisone 20 mg for your hands once a day for how long? Whew stay with me girl. Weanings going to be work! They will give you a schedule and directions, but it's not easy. Helped another BCO member through it. The key is to know when things need to be reported, the change in how your body responds,basically it's atrue withdrawal process etc. The body produces steroids normally, when we up that chemically, the body gets used to that amount. So, when that time comes I'll PM you my phone number.

The nail thing, I knew it was a common board, even with my sometimes overpowering OCD, I let her use it. DUH. The polish remover literally burned me. Yes, the smell is not something very healthy. I wonder what occupational diseases they get?????

Thanks Chevy, just an old nurse who paid attention and looked for the AH-hah moment. That means "I didn't know that". I.E. in doing the search for our Veggy, there was a particular syndrome that interested me for years  and I watched it until 09(BC/ DH's lymphoma year), found yesterday that there are several drugs to treat it now. That's the bennie to searching, learning other things along the way. Seriously lost the caring to do that until recent months. Too involved in looking at the ceiling, or as Veggy and I say being in the basement trying to find away out.

Chevyboy

Oh man, I just lost the WHOLE post!  I hate when that happens.....

Okay, once more....  Sassy, our first dog was named Chevy, after our 57' Chevy!  We had that guy for 14 years, and it nearly broke our hearts when we had to have him put to sleep.... a little Australian Shepherd.    We sold our Chevy about 12 years ago.... Can't hang onto things forever, I guess.

Now we have "Lacee Jayne".... She is my "other Daughter"....Ha!  (9 years old and the sweetest little Sheltie in the world.)   

I don't use very much chlorine.... Just about 1 T in a sink-full of water, when I do dishes.  I am so afraid of infections, and think that amount is good for evrything.  AND the creaming.  But the combination with the Prednisone had to have helped too.  I didn't bandage or wear gloves today, and my fingers are much better.

I started the Prednisone at 3 the first day, then 2 for 3 days, then one every other day for 3 days..... I'm starting the every other day tomorrow.  So I should be finished by Monday.

I used to have Stasis Dermatitis.... with the swelling, "bubbling" and sores around my one ankle!  Man, THAT one was awful.  Fought it for about 7 years.... Compression stockings, for the edema, Fluocinonide cream, and I found that Domboro solution helped the itching.... It finally just gave up I think, and went away.... probably to make way for this Eczema....  But everything is better now....

I don't notice any difference, since I've been taking the Prednisone.... nothing.  No swelling, or anything. 

By the way, what are your thoughts on vitamins and supplements?  I just bought Centrum PRO nutrients...Vitamin D3.   I used to take a lot of vitamins, but got off of them when I was taking a lot of meds for Asthma and Bronchitis.... And I found I felt NO difference when I wasn't taking them.....  I don't take any meds now.... only a Ranitidine once in awhile.....  I figure at my age, I'm really doing good.... other than an occasional skin thing.....

I love to research things also!  It's just so disappointing to go to the Doctors, and specialists, and  they can't figure out what is wrong....  I know it sometimes takes several visits, but I've been sent from Allergists to Dermatologists, and back again, trying to find out what is wrong.....   And sometimes I've been prescribed a sulfa-drug for a "low grade infection maybe".... THAT one wound me up in Emergency.  

Another time, I found out I cannot work anywhere around Paint Stripper.... even outdoors.  Another Emergency trip.   THEN there were the allergy shots, from the "Standard Western Treatment"..... THAT night, I broke out in welts from head to toe!  Back to Doc's for 6 prednisone.... "all at once!"    Or the OTHER allergy treatment....  I woke up looking like a TOMATO!  My face even scared me!  Back to Emergency......  Benadryl and Adrenaline......  It's a wonder I have lived this long.....  So the more I can figure out things myself, I figure I am better off..... I'm old enough to know what to try, and what to stay away from.....

Okay..... going to go get a Starbucks!    Thank you again for your help, and helping so many gals on here!

sas-schatzi

Chevy, new there was a story with the name--sweet memories. they definitely become our babies.

Sounds like I need to study some. The broad category that your question addresses is the Immune system. Then, how does are Immune system demonstrate weakness? What conditions does it predispose us too? What tests will help and do no harm? What can we actively do to strengthen the system?Will supplements help?

I think many on this thread have a plethora of things they are doing and taking. The research on the subject is immense with no "one fits all"approach. One thing Fuzzy has shared is she has 1-2 specialist from her cancer center that have intensely reviewed what she is taking both orthodox and alternative. Each of those words change there meaning over time as reseach piles in. I'm a believer in OMEGA3 and the B's.It took 50 years of research by UDO IRASMUS to get the orthodox medical establishment to accept his research on Omega 3. Now it's orthodox. Prior to the 90's it was considered alternative. Research can be a crap shoot b/c one article may be the advent of tremendous change, but change takes time to prove.

You likely have studied multiple chemical sensitivity? You sound like a poster child for it. I'm quessing you have many food sensitivities also. My PCP within first or second contact had us convinced and then tested for food allergy/sensitivities by blood test. 150 different items. We had to pay out of pocket, but it was worth the 375$. MRT Food Sensitivity test. Haven't googled it. I used what Saint PCP suggested.

One thing for sure--Anyone wanting to test anything ON your body i.e.scratch testing etc drive them away with a broom. BUT I'm sure you've got that one figured out.

Two books I could recommend 1. the Immune Power Diet--by Rudin or Berger 2.Omega3 by Rudin or Berger. Read them in the early 80's. The IPD predates the MRT testing, the author was at the advent of bloodtesting and diet. In the 90's he was creamed by others in his field as was his work, but it is the mainstay of what is being done now. OMEGA3, was what I call the easy introduction to understanding how the essential fatty acids are critical to health. Duh, right now I'm off of them, and am falling into disrepair LOL.

Way  to long, will talk again. sassy