more updates

[Pam P]

Rich and others suggested add these to my regimen. I called my onc. office & got the following response from him through his nurse: 1) metformin - no; didn't elaborate 2) milk thistle - okay; didn't say if he thought it would do any good or just not hurt anything with the meds I'm taking. 3) femara/faslodex - doesn't think they'd help (maybe because I've failed them before) but he said aromasin might be good to add & we'll discuss when I see him in March.

I saw the ENT doctor today about my sinus issues.
I have major blockage in allmy sinuses. He said some of the pathways are all clogged and advises surgery. At my request I am doing 3 more weeks of antibiotics first but I didn't get the impression that he thinks that will help much. I sure don't want to have to go the surgery route. I'll see if I feel better in 3 weeks and hope for the best. The doctor said there's a good chance that the surgery will open up the airways and clear out anything that's clogged there and I'll notice a big improvement. On the otherhand he said it doesn't always result in an excellent improvement.

I feel so weak and fatigued - much more than I did even 6 weeks ago. Impossible to know is it the cancer activity or this sinus infection or now more depleted from ongoing chemo. I'm sure it's some of each, but would like to know if it's because of the sinus stuff and if I'd feel better if I had the surgery - or would just go through more ordeal for not much benefit.

I'm also freezing all the time. Wearing layers of clothes and hard to get comfortable. My b/p is normal. My hemoglobin in low, I'm anemic but that's nothing new - my counts have been in the lower ranges for months.

[Jackie07]

Pam,

Thanks for the update. Could they not give you shots like procrit to increase the hemoglobin count? My iron deficiency anemia was not corrected until my 30's and I know what you are talking about.

Sinus headache is not fun. I know a surgery probably takes quite a bit of coordination since you are on chemo right now. Surgeons are always cautious on predicting the outcome - they have to say it's a 50/50 chance and leave it to you to make the decision.

Think of it this way: if you go ahead with the surgery, you have a 50% chance of getting rid of the sinus problem. You will feel better and be stronger for the cancer fight. You don't have anything to lose if the surgery does not improve anything.

Keep up your fighting spirit! Remember we are all here to support you.

[ElaineM]

Have you considered seeing a dietician, nutritionist or naturopathic physician about adding food and/or supplements for anemia? I have had anemia off and on for 30 years, long before I was diagnosed with cancer.
I take liquid iron. Liquid is better than pills which can cause constipation. I am a vegetarian, but I still manage to eat foods that help all my blood counts. I never needed transfusions, procrit or other shots for my blood counts. Blackberries, beets, apricots, raisins, kelp, dark leafy veggies, lentils, and mushrooms are some of my favorites. I also eat other beans. Organic blackstrap molasses also has iron. My naturopath told me sesame seed oil helps the body absorb the nutrients. I use a spoon a day.
Don't give up !!! It is winter, you are anemic and you have been getting treatments for several years. Those things can make a person feel cold and tired. Spring will arrive in a month or two. Hang in there.
Take care.

[flynny]

Thinking of you.

[Rich66]

Regarding Metformin, consider printing out the thread or sending the link to his nurse.
The ER issue is tricky since there may be a sliding scale between it and Her2. Femara, and maybe other ER drugs, can work again after a break. Do you think teh onc woudl go for a her2 blocakade with both Tykerb/Herceptin?
Glad there's receptivity to the thistle of the milk. Can't go wrong adding some green tea or Capsibiol caps.

Regarding the sinus infection/blockage,
I assume you have tried humidifying and nettie pot etc.
It's not the same but when I get sinus infections, they hang around a long time and drag me down.
The last time I went to an urgent care, I was assuming I was going to get some antibiotics and was surprised the doc wanted to do an x-ray and was talking surgery. Hmmm...easy there fella. I think it was a slow day.

I don't know what's involved in sinus surgery but if they have to put you under, probably not a first choice with the opiate sedation issue with cancer patients. If it has to happen, ask them consider the precautions.
But first..
Can they get a mucous sample from the sinus cavity and test it for specific bacterial antibiotic sensitivities or fungal infection? If they can get adequately treat the cause, the inflammation might go down enough to not require intervention.
I know fungal issues in various locations can be a byproduct of chemo. My mom got major toenail fungus from Navelbine which required half her big toenail being removed.
Seems like if it can happen there, the sinus would be pretty susceptible.
Here are some possibly relevant google results.

[dchips1]

I had sinus surgery back in 1995. I was able to breathe much better. Most sinus surgery these days are not that invasive because they usually go thru your nose, and I had had what was called a turbinectomy. Basically cutting away part of the blockage. Post op was not bad pain wise, just the annoying post surgical drips from your nasal passages. I know when my sinus are full you don't feel well at all. With chemo and everything else going on second opinion? Double check with oncologist and have they done a ct of your sinuses? Good luck and take care.

Darita

[schoolteacher]

Pam,

Hope you are feeling better. You are in my prayers.

Amelia

[StephN]

Dear Pam -
Glad you are on the new routine and working on the other issues dragging at you.

About the sinuses. I have long suffered with all kinds of allergies in all seasons. They have improved, but it takes work to deal with them.

I had a long-lasting infection in my right side and had various treatments for that short of surgery. Ct scan showed that the cavity on the right is larger than on the left. That seems to be where the bugs set in.

My ENT prescribed antibiotic ointments applied gently up my nose with q-tips. First I used Bacitracin, then had to get a heavier gun called Mupirocin, which I still use at the first sign of a cold or runny nose.

I also use a nasal spray 3 or 4 times a day that I get from the supplements store that is more than simple saline solution.

Hydration can be a problem in winter when we are indoors in the dry heated air. If you are not in love with green tea (also has lots of caffeine and keeps me awake), then find a good herbal tea such as BREATHE EASY by Traditional Medicinals (many better grocery stores stock this brand) that supports your respiratory system in general. I add a spoonful of organic honey.

Herbal tea will warm you up as well as get you up and moving to make it.

Hope something here will help

[Laurel]

Pam,

I am so sorry to hear of your continued struggles. Praying for relief and improved health.

[Karen Wheel]

Pam -I am so sorry to hear you are feeling so depleted. I would highly recommend a book that I am currently reading called:
Curing Cancer with Nutrition (Optimal nutrition can improve outcome in medically-treated cancer patients) by Patrick Quillin PhD, RD, CNS

He works with oncologists to help cancer patients endure the chemo and the treatments for cancer.... I am finding it really interesting.

I know that I am always talking about diet and nutrition - and I can't say that I can pose as a poster woman for this yet - but in 5 or 7 years - I plan to still be here cancer free and this will have more weight. ;-)

I know also, that our oncologists (most) do not think that taking supplements, or nutrition and diet - have that much to do with increasing our chances of beating cancer. However, I disagree.

The book is a bestseller in its category - on amazon.com in 1999 ---- and I bought a copy used for like half price - on amazon.com. It also comes with a CD (make sure you get the one with the CD) as the CD is a cool overview from the highlights of the book and worst case - it would be worth listening to this alone, even if you don't want to take the time to digest the book. (its pretty comprehensive).

I am doing even more comprehensive plan for diet and nutrition than he talks about (I have given up animal products pretty much in their entirety!) but a lot of the concepts are the same - so I am learning a lot of new things too.

I am hoping this might help you and maybe you can couple this with your new program to help you feel better and have more energy.

Thinking of you! Big hug all the way from Italy for you!
Karen

[ElaineM]

You might want to ask your doc about getting iron through the I. V. for the anemia. It is not normally given to cancer patients, but your doc might agree to it if the anemia is troublesome. I met a woman in the doc's office who was getting it every week for heavy bleeding from her period.
I read the book Karen Wheel suggested. I still refer to it regularly and can also recommend it. I think the author has a website too, so if you don't want to buy the book you might be able to find the website and get some information that might help you.

[Pam P]

I went for me herceptin today adn my hemoglobin was 7.8. Never been that low before. So off I went to the hospital for a transfusion. Never had that before either. The nurses said it should make me feel much better. So far no change, but maybe in a day or so. Sure hope they're right!

[ElaineM]

I hope the transfusion perks you up. Let us know how it went. Take good care of yourself.

[Joan M]

Pam,

Your low hemoglobin is probably contributing to your fatigue and also making you feel cold. The transfusion should help you feel better.

I'm glad the onc is willing to consider aromasin.

Joan

[Chelee]

Pam, I know a couple women that have had transfusions due to low hemoglobin. Your right, it did take a couple days before they felt better. No wonder you have been so cold & fatigued with your hemoglobin was that low. No wonder you have been feeling worse then normal. I hope the transfusion works it's magic quickly for you.

As to your sinues issue that's a hard decision to make. I can tell you my brother has had the worse sinus problems for the longest time and he "swears" by that nettie pot. He said it is unbelievable the way it cleans them out instantly. You might want to give that a try first. I really have heard an awful lot of great things about those nettie pots...seems to be all the rage with sinus suffers. I sure hope you get to feeling better soon.

Chelee

[Catherine]

Dear Pam,

Sending my love and support as you wait for the new blood to kick in. Thank goodness there are so many good suggestions from others that you can run by your doctor. Hoping you feel stronger soon.

Hugs, Catherine

[SoCalGal]

7.8 - That's why you are so cold. And tired. I always get a certain horrible headache when my count is that low. Hopefully you will feel better very soon, I think just overnight to start to bounce back.

What about another opinion on the sinus surgery?

[Pam P]

Neti pot - Chelee, you mentioned the neti pot. I do use that. Lately I've been doing it daily but before that it's been inconsistent. My ENT doctor highly recommends it daily. But he said that my sinuses are so blocked that the neti pot rinse probably only gets around my nose at this point and not back into the sinus areas where it needs to go. Hopefully this current antibiotic will help open things up enough so the solution will eventually get into the sinuses. I'm going to do it daily from now on. The ENT said 2-3 times a day okay too when I'm feeling cold symptoms.

Are there any other neti pot users? I always just used tap water with the saline packet. The ENT said to only use distilled water to avoid the bacteria in tap. I hadn't been doing that.

I can't remember if I mentioned before my nausea/diarrhea issues. (My list of complaints is long these days!) I don't know if this is caused by the tykerb or the antibiotic. Anyway I spent much of the night in the bathroom, but still feel I managed to get a long nights sleep and I think I feel a little more "zip" this morning so hopefully the new blood is going to help.

Thanks all for all of your support and suggestions - I am taking them all in.

[Darlene Denise]

Pam: I like the squeeze bottle made by the same company as the Netti Pot. It's easier to use and I think it gets up there better. Usually sold the same places as the pot.

Are you able to use one of the nasal steroids like, Flonase, Nasacort etc? Maybe regualar use of it would help manage things now and after the infection so you perhaps can avoid surgery.

Have you tried MucinexD? I am able to take half dose and it is effective, keeps me from feeling funny and helps with the cost. When I have a sinus infection I find it better to do half the Netti bottle in the am and then again in a steamy night time shower before bed.

Probiotics while on antibiotics and Tykerb can help. Get the freeze dried ones at the vitamin shop that have higher amounts than any of those yogurts can offer. I take them daily along with Protonx for acid. When the big D hits, I start taking anti-diahrreal meds each day, not just after movements. All of these in unison seem to help.

Hope something brings you relief and you feel much better soon.

Darlene

[tricia keegan]

Sending love and hugs you feel better soon Pam xx