TRIPLE POSITIVE GROUP
Comments
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Also, forgot.
Those of you in chemo right, as well as ALL POST CHEMO LADIES, now need to be EXTRA careful about going out and about in public. This year's flu is not only exploding nationwide, it is taking lives.
What should adult cancer patients and survivors know about this flu season?
"Flu" refers to illnesses caused by a number of different influenza viruses. Flu can cause a range of symptoms and effects, from mild to deadly. Some people, including cancer patients and survivors, are more likely to get flu complications that could result in hospitalization and death. For the latest information, visit 2012–2013 Flu Season.2012–2013 Flu Season.
I had cancer in the past, but I do not have cancer now. Does this information apply to me?
Yes. If you had cancer in the past, you are at higher risk for complications from flu, even if you are free from cancer now.
Are cancer patients and survivors more likely to get the flu than others?
We do not know if cancer patients and survivors are at greater risk for infection with flu. However, we do know that cancer patients and survivors are at higher risk for complications from flu, including hospitalization and death.
What can cancer patients and survivors do to help reduce the spread of the flu?
- Take time to get a flu vaccine.
- Develop good health habits to stop the spread of germs.
- Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
- Wash your hands often with soap and water. If soap and water are not available, use an alcohol-based hand sanitizer.
- Avoid touching your eyes, nose, or mouth. Germs spread this way.
- Try to stay at least six feet away from people who appear ill.
- If you are sick with flu-like illness, stay home for at least 24 hours after your fever is gone except to get medical care or for other necessities. Your fever should be gone without the use of a fever-reducing medicine. Keep away from others as much as possible to keep from making them sick.
- Follow public health advice regarding school closures, avoiding crowds, and other social distancing measures.
- Be prepared in case you get sick with a supply of over-the-counter medicines, alcohol-based hand sanitizer, and tissues.
- Take flu antiviral drugs if your doctor prescribes them.
Other important steps to take include—
- Stay informed by visiting CDC's Flu siteCDC's Flu site often.
- Develop a plan in advance with your doctor about what to do if you get sick (when you should call your doctor, whether you will need antiviral medication, and how to get a prescription for antiviral medication quickly if needed).
- Make sure your vaccinations are up-to-date.
- Keep a written record of the type of cancer you have, treatment you have received and when you received it, the name and contact information for your doctor, and a list of medicines you are taking.
"According to this week’s FluView report, influenza activity continues to increase in the United States with most of the country now experiencing high levels of influenza-like-illness. These current levels of ILI are nearing what have been peak levels of ILI during moderately severe seasons in the past."
You can see the map here: http://www.cdc.gov/flu/weekly/usmap.htm
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jen - I had previously diagnosed degenerative disk issues going back at least 10 years, and I have had pain in that area all that time. Sometimes so severely that if I sit too long I can't stand up straight for a couple of minutes. It has also caused sciatic pain that comes around the hip and down the leg in the front but that has gone away now that I have a different car. The PET shows the lumbar issue but apparently does not appear to be malignancy as it is noted on the report but not described as a potential malignancy. My MO did not offer to re-scan me at a specific interval, but this was my third PET. I had one pre-chemo, one post-chemo, and this one which was supposed to be post-Herceptin. This most recent PET scan was delayed, by me, because all the other ones were not clear looks because they were always close to a surgery. I wanted to get a good look so delayed the scan until well after exchange.
runner - welcome, sorry you have to be here, especially at your age! Glad you were not put off longer and you can have surgery and get started on treatment.
LeeA - I kept a copy of each CBC so I could track my blood count numbers myself. Other than two UTIs - one during chemo, one right after, I have not been sick at all prior to dx or after. That amazes me because I never wore a mask, I stayed home for the first week or so after each chemo but then I went out everywhere - to the mall, restaurants, to a wedding, to parties. I did receive Neulasta with each chemo and it apparently worked like a champ. Before dx I was not one to catch things from others, and I am not prone to colds, so other than cancer my immune system works well!
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Kayb- thanks for that info. Wow!!!i am trying to reasons understand iron the midst of trying to make lunch for two toddlers...so I may not have a clear understanding. Are they saying we might do better without supplements in general???
Not just when in chemo?
I know my wallet would be doing better..0 -
I may be mistaken, but I think the article says while on chemo, we should not take even vitamins. That's an eye opener. I've always heard that I should be taking my daily vitamins and such....and I would think especially when our WBC,s are low.
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Good article K.
It makes things as clear as mud. lol
Interesting hypothesis anyway. But until there is more research I don't see this as definitive by a long shot.
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The only supplements my doctor said I could have during chemo were a mulit made from real foods and Vit D3, and that's because me D level was really low. He wanted me to get my nutrients from food, lots of fruits and veggies in many colors, wild caught fish, grass fed/organic meat and dairy (said not too much dairy), and whole grains - all organic when possible. He says our body metabolizes the "real foods" much better than the supplements. Just tossing in my 2 cents. I did notice that I felt better when I eat organic, I could feel and taste the difference when I had the same fruit or vegetable that wasn't organic.
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My MO specifically told me "no antioxidants, no green tea, no supplements of any kind except vit D" during chemo. She explained that antioxidants would not only strenghten the good cells, but also the cancer cells and could potentially make the chemo less effective.
Jenn0 -
My MO told me the same thing, but she also said no vitamin D until I was done chemo and rads. And my vitamin D level was 12.
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Jenn,
Good info. I think that is what my Onc said too.0 -
I posted this on the January 2012 chemo thread but it might be pertinent here as well.
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In case anyone is interested, the packet provided by The Roy and Patricia Disney Cancer Center (where I'm receiving treatments) included this typed/printed list of supplements to avoid during chemotherapy. I'll type it up here in case anyone is interested:
*Please avoide these antioxidants while undergoing treatment for your cancer:
Alpha-lipoic acid
Luetin
Beta Carotene
Coenzyme Q10
Lycopene
Melatonin
Selenium
Zinc
N-acetylcysteine
Quercetin
Vitamins A, C and E
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FWIW - my MO had me cut my D3 down to 2000 IU (I had been taking 4000 - 8000 IU per day - my D3 level was 42 when tested). ETA: Apparently normal is anywere from 32 to 100 but I read somewhere that above 50 is optimal for cutting breast cancer risk.
He said I could continue taking 1 curcumin capsule per day but I have avoided that as well (haven't taken it in a week and a half). For some reason, I stopped taking the multi-vitamin as well (I think because I just didn't want to be bothered during the first days of chemo). Now I'm thinking of looking into what Linda mentioned regarding a food-based multi-vitamin. Thanks for that tip, Linda.
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hi guys
sorry i don't have the energy to read through all the posts but i did see that Jenn from australia's scans are all clear so YAY!!!!
i am having an extremely bad day, i don't think anyone else can listen to me quite frankly. I just posted on the Breast reconstruction forum but i need to share with my triple positive sisters that have been with me for so long
so as many of you know i had the bmsx with TE's about 3 months ago. I did the LD flap on the rads side because PS (here in canada and i did consult with more than one) would not do a TE on radiated skin. He said i was not a candidate for diep (and he does lots of dieps so i know its not because of skill). I struggled with the surgery choice up to the day of. I called the coordinator, spoke again with the surgeon who assured me that unless i was "mountain climbing" i would be fine
well im not I have had this terrible lower back pain since surgery, i know its because the lat was displaced. I almost feel like my entire body off kilter. So of course I told my MO who has quickly ordered a bone scan. So now i have to worry about mets too.
im doing physio/yoga/massage to no avail - could this really be happening????? beat cancer and be permanently disabled due to breast surgery?????????
sorry ladies I AM HAVING AN EXTREMELY BAD DAY
plus thanks to lupron my hot flashes are back and with a vengence
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rozem, I was just thinking about you last night and wondering how you were doing.
I'm so sorry to hear you're experiencing so much pain. You've had a tough road with the tissue expanders and now this.
I don't know anything about that type of surgery but is it possible that chiropractic adjustments might help? When my lower back is bothering me I use an inversion table here at home to try to get things straightened out again. Hanging (almost) upside down can help get things shifted back in place - or so they say.
((big hugs))
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Rozem ((((((Hugs))))
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rozem - I saw you other post and felt so bad for you - what kind of physical therapy are you doing? Are you receiving it at a cancer center? When I had LE PT it was at a large center and the ladies in that department only work on cancer patients and are very familiar with reconstruction surgery. They have special expertise other PT do not have.
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Rosem, I don't have any advice, but just wanted to say I hope your pain is better soon.
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thanks ladies...i don't know what to do, so helpless i swear. What a living nightmare. SK I was referred to a physio from my cancer center but they just took over the hospitals patients so they have no other patients like me (lots of other types of cancer re-hab) so i am not sure they know what to do with me. I am praying big time that this resolves with excercise
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{{{Rozem}}} I so hope the physiotherapy helps you. You have struggled for too long with this!
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Oh Rozem. So sorry about all the pain. Hopefully it resolves soon. Take care and keep us posted.
LeeA: My "D" levels are at 70 and they still have me taking 3000 IU per day. My onc says 70 is perfect. Too much is really bad so glad mine is still checked every 3 months. I need to ask about because at some point (probably soon), I'll drop to every 6 months.
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Rozem, does the lat flap use the muscle from your back? If so, there are lots of people who have had issues with their back and trying to retrain their back muscles to compensate. I just did a quick search on lat flap back pain, and there is a lot of it. I hope you can find some relief and a good physical therapist to help you.
The only supplement I took was Acetyl l carnitine to help with potential neuropathy. Doc ok'd it as they are doing studies on it helping. I started back up after I finished chemo. I am a little hot or miss with it all. I currently have a chewable multi vitamin that has lots of good stuff in it, but it tastes like fruit flavored grass. Lol.
I had a followup with my ONC yesterday. Don't go back until May when he will switch me to an AI with a prolia shot for bone density. That annoys me as I was trying to keep my bone density with weight bearing exercises, vitamin k, magnesium, etc. But....he feels strongly about it. Then I wanted him to test for circulating tumor cells. Showed him the bco article that even one cell can indicate a poorer prognosis. He said "we can do it, but what do you expect to do if you find one?" I said "Perhaps you will have to do some additional scans that you don't like to do." He chuckled. I know they are testing them in the trial I am in, so I am trying to see if they will release that info. I sent the article to them. Then, I asked him about IV vitamin supplements. Lol. That came close to putting him over the edge, poor guy. He thinks that is just a waste of money. So.....I have laid the groundwork for my next appointment. I'll start working on him during yoga class.
I am trying to get back off sugar and white flour. Not doing so well!0 -
Oh, he did say he was happy to see my hormone panel has my estradiol level at less than 12, and progesterone at .3. I gingerly tiptoed around the "fooling around" component and he said no hormones, not even the vaginal kind. He doesnt believe in taking a chance. Bummer. I could still get them from my other doc, but would then be thiinking about it too much in the back of my brain. I'll stick with the over the counter stuff.
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yes fluff that is the surgery...i kinda buried my head in the sand b4 surgery bc i was so sick of BC - well i have to deal with it now. I have contacted a NOLA doc - i don't think there is much they can do but i want to try anway
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I don't blame you. I think when I was doing my research on what I was going to do, I read about some women who posted going to extensive physical therapy to get things evened back out again.
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thanks fluff...i totally blame myself. I'm sick about it actually. I thought i was in the home stretch and this has set me back big time. I am committed to doing whatever I can, I just hope its enough.
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((((Rozem))))
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Rozem,
I'm sorry you are having such trouble. I had the same surgery as you, and I guess I have been lucky. I haven't experienced pain like you describe. I was given pages of exercizes to do at various stages during the recovery. Perhaps those might help. I might be able to find it online. I can look if you want.
I have had weekly massages starting about 6 weeks post surgery. I would recommend keeping up with them.
What does your PS say about your pain? Maybe he/she has a suggestion about what to do.
Good luck!
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cgesq my PS said i would be "a case study" in the history of the hospital with this type of lower back pain issues. But from reading the LD flap thread from the beginning i see that yes it does happen. I did not start PT until a few wks ago so i think that is part of the problem. I started too late and i think the muscles atrophyed (sp?) i was so sore from the TE's i literally did nothing for 4-5 wks after surgery. Im glad you haven't had issues, gives me hope
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Rozem! Hate to hear you going through this. Back pain sucks. I hope PT helps.
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Rozzem, I had PT, with a therapist who does chemo rehab only. She is very good. She won't let me do too much, she says if I overdue, we have to stop, and that would put me farther behind. So she really slowed me down. What I am trying to say, is perhaps, you are expecting too much of yourself? It all goes back to what you, yourself, went through. Your experience is like no one else's. So maybe you have to expect slower recovery, but it will be fine in the end. I know I walk better now, and my knees are really bad. But I walk straighter and don't rock side to side as much. So big improvement in my gait, but that's almost four months of pt x 2 week. So maybe dont be so hard on yourself. Just a thought. Much love.
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LeeA, ugh that list is unnerving. I took several of those things during chemo, That oncologist from UCLA who specializes in complementary medicine and nutrition counseling recommended them. MO was ok with most of them (and I didn’t take anything he nixed). The study was ok with most of them (likewise, didn’t take anything they nixed). And still I ended up with a bunch of stuff that was on your verboten list. I don’t get it. Gosh the more I read these posts, the more I see questions I didn’t ask, things I might have done, etc. And I think my team is pretty good overall. But I can see why you were lobbying to get in with your guy. If God forbid I actually DO have … you know … or get a recurrence, I will try to get in with your guy for a consult.
Rozem, ugh. I haven’t a clue about any of that stuff but I am just so sorry that you are having such an awful time.
SpecialK, I have degenerative disk disease, but it wasn’t that symptomatic before. I discovered it from mris after a car accident, and it was commented on that it was surprising that I didn’t have more problems than I did. So, hopefully I’m having them now (i.e., my tingling, misc. aches and pains etc are from that and not from, you know….).
TonLee, I know what you’re going to say here – but I feel like I’m being a pest to MO as it is and I don’t want to push any more about the pet scans etc. I’m done in 2 weeks, and if he thinks it’s not good for me to have all that radiation at once, I doubt it’s worth fighting his advice just b/c I’m driving myself nuts. I try to tell myself that he’s not worried about it so I shouldn’t be. (Though I definitely should have the scans.)
Lago, I did search for other reasons for the high phosphate levels and I’ve eliminated everything except bone mets. That being said, as others have said, my labs might just be kind of wonky right now b/c of everything my body has gone through. Normal is apparently 2.7-4.5 and my latest lab was 5. Pbrain, your input would be helpful!
Wow Jenn that’s really interesting about the tamox. I don’t’ think I’ve had any hot flashes either. I’ve had periods where I felt like I was consistently kind of sweating, but it was more slow and steady. Is that a hot flash? I get the feeling they are a lot less ambiguous than that.
Oh and I had been taking vit D but I stopped b/c I thought maybe that was contributing to my wonky phosphate results. Is anyone else even being tested for phosphates? Anyway I’ve been off vit D for a month or so and just got tested for it, and it was 28, which I understand to be low. But I guess I’ll stay off the supplements until I finish radiation.
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