Starting Chemo March 2015

shaz101

Thanks katy and theresa.

Yes theresa, my vit D was low as well. He gave me a prescription for some powder. I took it last night, I'll take 1 per month until the end of year. I will investigate the option further and give myself every opportunity to decide either way. I just don't want to be angry with myself if it comes back and I could have prevented it. When I spoke to the nurse practitioner yesterday he said the reason they don't like to do tests unless there are symptoms is due to our high exposure already to radiation. He said having a cat is like having 400 X rays. But he did say that mri's are a better option, but they are currently not used as standard care yet in Australia. He also said they are much better than mammograms. I spoke to my GP and he agreed. I'm Investigating the cost of it so I can pay for it myself.

Italychick

20 drops under the tongue initially, taken with k2, got my vitamin d level to 98. My MO was shocked, she said she didn't know how I achieved that. And I know it was the drops, because when I backed off, my vitamin d level went to 73 in about a month. What is your vitamin d level, if you don't mind me asking? Everything I have read said try for 70-100 when you have had breast cancer. It is one of the few tests my MO orders routinely, and she is a very by the book doctor.

Another thing to consider is doing ultrasounds, which I will be doing. Non-invasive as far as radiation goes, and an ultrasound is what detected my lump.

I feel like we have to research ourselves and be our own advocates.

shaz101

Thanks theresa you are helping me so much. I don't know what it was. I didn't get a copy of the tests. I trust my GP, so I just go with what he tells me. Lol, sometimes I like burying my head in the sand. I just got a price for a MRI of just my breast. It's just under $400 au, so I think I will do it. It'll help give me peace of mind and hopefully help me come to a decision. I agree though, if we don't ask questions and push, they just treat us as another statistic. The nurse practitioner said that he doesn't use stats when talking about a patient, they are only helpful when discussing groups of people.

How about the low white cell count? My GP was unsure about whether it was still a hangover from the chemo. He will monitor it and call me if he thinks I need to come in.

Jackbirdie

My new pcp just tested for vitamin D. It came back at 22. Pretty low. I was shocked to learn of the links to joint pain, and even breast cancer. Really made me wonder.

He put me on 5000 iu daily but in gel pill form not drops. I hadn't heard of the drops. If I don't get quick improvement with what he gave me, I'll ask about that.

ksusan

Also: scans show "incidentalomas" that are usually nothing but raise fear and cost money to rule out.

Vitamin D can be raised by short sun exposure. Despite dire warnings about sunscreen and melanoma risk, a few minutes of forearm exposure at midday may be desirable.

Italychick

here I am again lol.

Sharon, my breast doctor said don't do an MRI before one year because it can show inflammation and false positives from surgery and chemo. So my first MRI is set for February. I am doing a new mammogram in October (don't want to, but breast doctor says she needs a new baseline for comparison) and a Pet scan in November, but that is my call to do. Breast surgeon says good information, but probably not 100% necessary. So I am thinking that through because I don't know if it will show anything that soon since I think it can only detect things of a certain size. So I will be going back to her to ask for an ultrasound, and maybe do PET later, not sure yet. My initial PET scan showed nothing except sinus mucosal thickening and an inflamed neck node because I had a cold. Pretty expensive way to diagnose a cold!

The vitamin d drops seem to work more effectively because the vitamin d gets into the system through the tissue under the tongue, so it goes directly into the blood stream instead of through the digestive system which is where the body processes it when you take a pill. Kind of the same reason a person with angina takes nitro glycerin pills under the tongue. So when you take a pill form, a lot of it gets broken down and doesn't make it to the blood stream, at least that is my understanding. I am in the sun almost everyday for 1-2 hours for my bike rides, but I could never get my vitamin d level over about 50 until I supplemented.

For white blood rebuilding, I used shark liver oil, organic lithium and zinc. Thymus helps too if you can get a good clean form. My experiences are an anecdotal n=1 (me) because there are no trials to support my data, but I will say with this regimen I got my white blood cell count from 6.5 to over 12 before I started chemo. I did it because I knew chemo would hammer my white blood cell count. And my white blood cell count was over 17 all through chemo, baby whites fantastic. I was never on any restriction and I was exposed to snotty sick kids all through chemo. I did do the Neulasta, but getting my white blood cell count to double before chemo had nothing to do with Neulasta. I don't know if this regimen will work for others, but it did seem to for me. Right now my white blood cell count is around 7 which is exactly where it was before I started chemo and supplementation.

Katy, 22 is really low, glad you are working to get that up. The one thing my MO was really clear about is that vitamin d level is linked to breast health.

Sorry to be so long winded, and just ignore any of my babbling you want, no offense will be taken.

Another thing to think about is liver rebuilding. I have been eating a lot of artichokes because I really love them, and they are a great liver rebuilding food. My liver enzymes didn't really elevate during chemo, and they are holding steady around 20-25.

I do have a tremendous amount of help figuring all this stuff out from my husband because his goal has been to get me through this process with as little drug use as possible, and he focused on keeping my body strong and healthy.

But damn the neuropathy, I couldn't work on that during chemo because all my sources for helping with it were antioxidant based, and I didn't want to take the chance they would undo what chemo was trying to do. Most of my neuropathy has now resolved since I was able to treat it once chemo was over.

Also, my MO has focused on my b-12 level (just tested me again and I will get results tomorrow) so that level may be important too. I do b-12 supplements under my tongue too.

Phew! Think I'm done for the moment. lol.

shaz101

Thanks theresa, all very good info. I appreciate you typing it all out. My B12 was within normal range. I think he ran every test he could think of! All were ok except for RA, white blood cells and vit D. I'm glad something turned up, I'd hate to think I am in pain for no reason!

I went to the health club this morning and sat in the spa and sauna for a while. The LE clinic told me that if a wanted a sauna or spa then I should do it. I'd soon find out if it made it worse or not. I did some self massage when I was in the sauna and some arm exercises while I was in the spa. My arm is no worse for it.

jumbledbamboo

thanks for all the support ladies. It was another rough day. I went to my oncologist to get the port checked. I had gpt so worked up. It is fine.My nurses are so great. Thye said my weight loss is making it poke out more. I was just terrified it was a blood clot.I had a panic attack on the way home tho. I have kept them at bay for so long. So I went home took a pill and slept for hours. I woke up in so much and it just keeps going. I have tried to find advice but since it was not a full hysterectomy I guess im not looking in the right places. On the plus side my family is happy. I just hurt. It doesn;t seem right but it has only been a week.

jumbledbamboo

Speaking of supplements do you take 3 6 9 supplements?

Jackbirdie

T- that is all good info and thanks for sharing. My liver enzymes had been elevated (sometimes up to 3-4 times high normal) for a year prior to chemo. I was very concerned about the toll chemo would put on my liver and that doses would have to be adjusted or stopped.

I started eliminating all drugs that were not of immediate life saving importance. I did that slowly, while blood draws were being done regularly. Towards the end of this process, just before chemo, liver enzymes had come down, but were still high. I had also started drinking the juice of a lemon in hot water every morning. I had read about it on both liver health and arthritis sites.

The last drug I could eliminate was gabapentin/neurontin. The last blood test before chemo AST and ALT were normal and stayed in normal range through chemo. I was amazed and so relieved. I will never know for sure exactly what did the trick but I have decided to never take any Tylenol or products with acetaminophen in them or gabaoentin again, ever.

After chemo I stopped doing the lemon every day and I realized about a month after chemo I was starting to feel joint pain again. So I started up the lemon about 3 weeks ago and feel better. I just feel better when I do it so I guess I'll keep doing it!

We shall see about the D. I also take curcurin, but my pcp took me off fish oil due to cholesterol. And I have been finishing off a bottle of glucosamine/chindroitin but before I reordered it I researched it again. It seems early studies showing results in re joint health were not backed up by following studies. So now I'm not sure. Does your husband have an opinion on that? I'd be curious to know. And krill has been suggested as an alternative to fish oil, but I don't know. I'd like to try to get what I need through food as much as possible. I have been looking at anti-inflammatory eating too. It could be just another fad but that seems related to cancer also. Ugh so much to evaluate

Jackbirdie

Jumbled- sorry you had another rough day. Have you thought about calling the surgeon about the pain? If you aren't feeling better -a lot better- at the two week mark I would call. But it wouldn't hurt to call earlier. Any chance there could be infection?

shaz101

jumbled, im so sorry you're in pain. I hope it settles soon. Panic attacks are horrible, I'm glad you took something for it. Thinking of you xxx

PS, I don't take that supplement.

shaz101

I just read that RA reduces lifespan by 5-6 years. Feeling sad and pretty Fucked off right now.

Jackbirdie

Sharon- Stay off Dr. Google. This just means in general. For you, instead of living till 105 you will just make it to 100!!!!! 😂😂😂

shaz101

Thanks katy, you really would think that I would know that! Lol

jumbledbamboo

Shaz I agree with Katy. Lol! Thanks for the advice. I just don't know what to think. I think I'm in a tizzy because all this shit is hitting me for real. It's just so much.And I guess I'm just weary from it all. The stroke took away a lot, but cancer is making sure that everything has a concrete permanence. Ya know, just so I don't get any bright ideas.

shaz101

Jumbled, its a lot to take in. Just try and take it in, in smaller chunks. Get through this day, hour or minute. Know that we are here for you xxx

jumbledbamboo

. Today I plan on just being still for a moment. Thanks Shaz xxx

ninjamary

Katy. I love those earrings! I have "purchase earring(S)" on my to-do list. They make a difference!

Vitamin D. I take a dose every two weeks. My levels have been low for years. I'm assuming it's from my thyroid. Also I rarely get any sun exposure.

My eyebrows are coming back!!! I use rogaine on my parts of my scalp and eyebrows. I thought it was turning my eyebrow line blue until I took a closer look today. Some are coming in as my last 6 hairs have turned into 2 hairs. Looks like I have a little bit of eyelashes coming back also.

IndyGal35

Sharon, my WBC, RBC, and Hgb are still low. They haven't budged in a month, but the MO said that it can take quite a while for the bone marrow to recover after platinum-based drugs.

Question for those of you that are done with rads: when did you start feeling the itching and fatigue? I have 7/25 today, and I'm definitely starting to itch and feel pinpricks of pain if that makes any sense. I feel way more tired than usual, but I'm wondering if it's just from the daily grind

Trvler

I am sorry about your new diagnosis, Sharon. Did you have that joint pain BC? My grandfather had horrible RA and he lived to be 80. But his was early onset. I think it started when he was in his late 30's.

Thanks for all the great info, Theresa. I take 2000 IU's a day of Vit D. I didn't know if you could achieve toxic levels but my MO never tests for it. I would like to know what it is.

jumbledbamboo

I like to take pics. Hope this brightens up a day!

Jackbirdie

Beautiful, Jumbled! Brightened mine!

molly1976

Lee, I didn't start really itching until the end of the third week of rads. I noticed maybe some small things before that but no persistent itching until almost the end (I only had 4 weeks total). I did feel more tired the first couple of weeks but that seemed to go away for me by the end.

molly1976

Have any of you pre-menopausal ladies had your periods start back up yet? My MO seems to think mine will show up again but so far nada.

IndyGal35

Molly, I finally got Flo after 12 weeks PFC.

neverthought

Sorry to hear about the RA Sharon. Hope that treatment brings it under control really soon. Hoping it is more as a result of treatment and will settle down once your body starts to heal more. I heard yesterday that pineapple is very good for inflammation, though the source was Dr. Oz so I don't know!

BS did offer me bilateral MX as I had to have one side done anyway, and still having conflicting thoughts. On one hand other breast is healthy and has sensation. When you have a mastectomy nerves are damaged so you have numbness and sometimes phantom pain. Some people develop a pain syndrome that never goes away. So I'm thinking, as much as I hate mammograms, biopsies, MRIs I'll keep the healthy one. But must admit it makes me very nervous. From what I can figure out not an increased chance of cancer in remaining breast and won't effect recurrence either way. If I didn't hate surgery in general I might go for the bilateral just for the peace of mind. Have to have cataract surgery soon and scares the heck out of me, even thought that is about the easiest surgery there is. When I had my other eye done I was sick as a dog for 2 days, don't know why. Surgery just makes me nauseous for some reason. Maybe the anesthesia?

Am waiting to read Dr. Love's newest edition of Breast book to get her read on a lot of things. Anyone seen it yet? 6th edition just came out this week.

Joke's on me too about insomnia. After mentioning how well dark room helps me sleep now find I'm having trouble sleeping. Hoping it's just too much sugar at night time. I need to give up sugar anyway. One of my friends said to give up anything that causes inflammation: sugar, meat, milk but I spoiled myself while I was on chemo with excuse I couldn't afford to keep losing weight and not have to break the ice cream and chocolate chip cookie habit. Just can't have them in the house, no will power.

Love Katie's earrings and even better that they were a gift from someone that loves you. They look great on you!

slothabouttown

Sharon, I'm so sorry about the RA diagnosis. I have several people close to me with RA and the ones who have a very active lifestyle with lots of exercise manage their symptoms the best. There are some very effective meds for RA but it can be another long road finding what works best in each case and getting the results. I also see that stress is a big factor in flare ups, so as others have said, maybe your symptoms will subside some when life gets more normal. I sure do wish the best for you and have seen how tough you are, it's just not fair that you've been hit with this!!

Molly, No period for me yet, MO said "probably not." I repurposed that drawer in the bathroom already so that means it'll probably come back any day now.

Lee, I didn't have itching and peeling with rads until the last week. I used so much calendula cream and aloe and don't know if that helped or not, from what I've read it's just a crap shoot. My fatigue was present the whole time and I didn't really realize it until I finished up and started to get my energy back about two weeks after rads. I worked all through it but was in bed by nine most of those nights.

Carrie37

Sorry to hear about the RA Sharon. Not fair at all! There have been any times during this process that I have wondered/thought about not doing something "they" have said I should do. Current example is the Tamoxifin. I hear my doctor say all the statistics about how much I lower my reoccurrence rate with each different treatment. I just don't want to do any of it anymore. Feel free to tell me I am crazy for not wanting to do anything else after rads and my exchange surgery. I feel like stomping my feet, crying and screaming at my family who says I must do everything I can now. They don't have to do it. I don't want to go through any more of this crap!!!! I want to do rads, have my exchange and be done. I'm 38 and tired of hot flashes and feeling like shit. I already have depression. Do I really need to stop my anti depressants and go on another drug that causes depression? My alternative? The removal of my ovaries. At age 38. Just isn't fair. Yuck. I want to cry and scream. My MIL is here. Being very helpful. Cleaning cooking, etc. She keeps waking me up though. I'm looking forward to quiet when she goes home. I feel evil for thinking that!! I just want my life back but I wonder if that will ever happen.

Italychick

Katy I do not take glucosamine/chondroitin. I do take curcumin. Getting vitamin d level to a higher level helps with joint pain. Not sure what I am doing is right, but my PET scan showed no arthritis detected anywhere in my body. Hubby is big on fish oil for inflammation. And in addition to the other supplements I mentioned, I take magnesium every day. My supplement list is scary I know, but hubby got me through chemo with minimal side effects, so I haven't questioned him too much.

I do try to get a lot of what I need from clean eating, but it isn't possible anymore to get all we need from food, sadly. I tracked my dietary intake for about a week and was surprised to see that even with clean eating I was unable to get the appropriate amount of magnesium from my diet.

Pineapple is great for inflammation and also for scar tissue. It has some pretty powerful enzymes in it. Fresh cut pineapple can even be rubbed on scars topically. But I think for inflammation it is the fresh pineapple that has the magic in it, not the juice.