Radiation Consultation

I am on Day 9 and still no ill effects from the Herceptin. It kind of wreaked havoc with my bowels for about a week but that is all. The evil Taxotere is still rearing its ugly head though. I still have a bitter after taste when I eat certain things, especially sweets. My face is still sensitive and my energy isn’t back completely. The worst of it is that I seem to be losing my fingernails. Some of them (especially the thumbs and index fingers) are barely hanging on. I went for a manicure the other day because I couldn’t stand looking at them anymore. They were so dirty looking and I couldn’t get them clean. She covered them up with some nice nail polish so they look good now but they really hurt today and I keep bumping them. It won’t take much to rip them off so I am trying to be so careful but you know how that goes. There will be some very colorful language when it happens because it already is like that when I bump them – it just hurts sooo much! I just need to keep them for a couple of months since the new ones are only coming up about ¼ of an inch. (Yeah right - like that is going to happen!)

My hair is growing! It is so wispy and fine that I can't even really see it unless I turn my head this way and that to catch the light but it's there!

I saw the radiation oncologist on Thursday. (Dr. V) He is very nice, compassionate and easy to talk to. He took the time to ask about our family and what they are doing. He asked where we are from and asked questions about Nipawin. He examined me to make sure that I have enough movement in my arm to be able to lay in the proper position during the radiation treatment. I was all set and ready to get my tattoos and prepped for radiation but this was just a consult to explain it to me and see if I was willing to go through with it. Now I have to go back next Wed for all of that. My appointment is at 2:30 so I can just go in for the day for a change. They said I will likely start on Aug 17 and go for 5 weeks Monday to Fri.

Starting Tamoxifen and Herceptin

I am still feeling the effects of the chemo. This time it took the full three weeks before I could eat much of anything that tasted like it should. There are still some things that leave a bitter after taste. My fingernails are a real mess. They are yellow and curled and look like I am a smoker (which I am not). Some of them are coming unglued from the nail bed. (These are real fingernails not the fake kind). They are very uneven where they attach to my fingers so they are really hard to clean in spite of my best efforts. My eyes still water sometimes but other than that I am pretty much back to normal. (Oh yeah still no hair or eyelashes….)

I saw the oncologist on Tuesday. He gave me a prescription for Tamoxifen which I will be taking for the next 5 years. They give me 6 months at a time. It is one tablet a day and if I pick it up from the cancer clinic I don’t have to pay for them. They will even mail it out for me if I won’t be in the city. He said my heart scan was normal so Wednesday I would be starting the Herceptin. He assured me that it would not be as bad for me as the last 4 months were. I may get a headache or some achy bones until my body adjusts to it but that’s all. I was still nervous when I went in there for the injection on Wednesday. The nurse also said this wouldn’t be so bad. I told her I read some scary stuff on the internet and she said I shouldn’t read the stuff on there. They started me off with a loading dose (which is bigger than I will usually get). That took 1 ½ hours but from now on it is supposed to take only ½ hour. I didn’t have any ill effects while getting it and as of day 3 I haven’t really had any since then yet either. Also no side effects from the Tamoxifen so far. The doctor wants to see me in 3 weeks so I will get my next dose in the city. After that I should be able to get every other one in Nipawin.

The Last One!

I guess I should update everybody on my status. I did have my last chemo treatment on June 30 – a day early because of Canada Day. Again I felt pretty good that day. The Pharmacist said I should take the Benedryl – 2 tablets 4 times a day for a week and that it might make me drowsy. Oh yeah it made me drowsy all right! I slept for 20 -22 hours a day for the next 4 days! I would wake up for the bathroom or to eat a little bit and then I would be back down for a few hours. I couldn’t sit up for more than 10 minutes at a time. Everything hurt. I also started taking the antibiotics he gave me on day 3 and that just upset my stomach so much that I stopped on Saturday. I just couldn’t face taking any more pills. It took me a full day to wake up so Sunday I was finally able to stay awake for most of the day. All that Benedryl (I only lasted 3 days on it) did stop my face from getting the sunburn look although it does still feel a little sensitive. My mouth didn’t get the scalded feeling so far but it is still coated in a white film and nothing tastes or feels like it should. I am really hungry but can’t find anything to eat. Even the savory things taste bitter or have no taste at all and unless it is something very soft and moist it feels like chewing on sawdust. I’m planning all the things I am going to eat in a week or two. Mmmmm Steak, Greek Ribs, BBQ Burgers, Potato Salad, Lettuce Salad from my garden and my new potatoes should be ready by then too!

Another new side effect is that my fingernails are curling. They are turning a yellow orange color and are curving down on the ends. You know this stuff is potent when it can curl your fingernails!

Roxanne was home for 2 days. I didn’t see much of her since I was always sleeping but she did help me out a lot with cooking and cleaning.

I will see the oncologist on July 21 and will probably start the Herceptin the next day. I am hoping and praying that I don’t have any side effects from that. I couldn’t possibly face a whole year of that! July 30 I will see the Radiation Oncologist so I will probably be starting radiation some time in August.

Just one more to go!

June 10 I was back for another dose of Taxotere. I saw the doctor the day before and he gave me some prescriptions to use to combat all my side effects. I have 2 weeks of antibiotics to start taking on day 3 and some Tylenol 3’s for the pain in the joints. He also said I should take Benedryl tablets for the itchy face and neck. He said we could try decreasing the dosage of the Taxotere by 10% but I said I would see how I do with all these new drugs and if it is still bad we can try that next time. They still monitored my blood pressure really close and I had the cold packs on my hands and feet. This time it took about 1 ½ hours to administer the chemo and I came through it all right.

Again I felt pretty good on Wednesday and Thursday. On Friday I was feeling a little achy and started the antibiotics. I still got all the same side effects but mostly they were not as bad as the first time. I had a fever on Sunday and Monday but didn’t get up to 38C so I didn’t have to go to emergency. My mouth was scalded but I was very diligent with the salt water so it also didn’t get as bad. I still can’t eat much because the texture of most things feels like chewing sawdust but today that is getting better. Anything sweet still has a bitter taste though. My face and neck are quite red and itchy but not as bad as before. My face is starting to peel again though. I have a total lack of energy and I still have to sleep quite a lot. Oh well, that is 5 down and just one more to go.

Audrey is here once again to look after me while Murray is away on his big fishing trip.

An interesting article I found at ctv.ca

This is long but worth the read...

Most cancer patients try nontraditional treatments
Updated Thu. Jun. 11 2009 8:20 AM ET
The Associated Press
TAMPA, Fla. -- With much of her lower body consumed by cancer, Leslee Flasch finally faced the truth: The herbal supplements and special diet were not working.
"I want this thing cut out from me. I want it out," she told her family.
But it was too late. Her rectal cancer -- potentially curable earlier on -- had invaded bones, tissue, muscle, skin. The 53-year-old Florida woman could barely sit, and constantly bled and soiled herself.
"It was terrible," one doctor said. "The pain must have been excruciating."
Flasch had sought a natural cure. Instead, a deadly disease ran its natural course. And the herb peddlers who sold her hope in a bottle?
"Whatever money she had left in life, they got most of it," said a sister, Sharon Flasch. "They prey on the sick public with the belief that this stuff can help them, whether they can or can't."
Some people who try unproven remedies risk only money. But people with cancer can lose their only chance of beating the disease by skipping conventional treatment or by mixing in other therapies. Even harmless-sounding vitamins and "natural" supplements can interfere with cancer medicines or affect hormones that help cancer grow.
Yet they are extremely popular with cancer patients, who crave control over their disease and want to do everything they can to be healthy -- emotional needs that make them vulnerable to clever marketing and deceptive claims. Studies estimate that 60 percent of cancer patients try unconventional remedies and about 40 percent take vitamin or dietary supplements, which do not have to be proved safe or effective and are not approved by the federal Food and Drug Administration.
None has turned out to be a cure, although some show promise for easing symptoms. Touch therapies, mind-body approaches and acupuncture may reduce stress and relieve pain, nausea, dry mouth and possibly hot flashes, and are recommended by many top cancer experts. A recent study found that ginger capsules eased nausea if started days before chemotherapy.
Many hospitals offer aromatherapy, massage, meditation, yoga and acupuncture because patients want them and there is little risk of physical harm. They call this complementary or integrative medicine because it is in addition to -- not in place of -- conventional treatments.
At the other end of the spectrum are quacks selling fringe therapies and supplements through testimonials, not proof. Laetrile, "detoxifying" coffee enemas, shark cartilage -- the miracle cures change but the bogus claims remain the same.
"What I am noticing in the last year or two is a resurgence of these things. It's coming back," said Barrie Cassileth, integrative medicine chief at Memorial Sloan-Kettering Cancer Center in New York and a longtime adviser to the American Cancer Society.
The Internet fuels this trend by letting people buy direct and bypass doctors who could help them see through scams and misleading claims of scientific proof. Sadly, some Web sites are run by quacks -- a "doctor" title doesn't mean the remedy is safe or effective.
"A lot of these doctors prey on people's insecurities and need for hope," said Dr. Roy Herbst, lung cancer chief at the University of Texas M.D. Anderson Cancer Center in Houston.
About 7 percent of cancer patients go straight to an alternative approach, sometimes traveling to Mexico, the Bahamas or a "spa" in Europe for treatments not allowed in the United States, Cassileth's research found. Most cancers spread slowly, so people can be temporarily fooled into thinking herbs or special diets are keeping it at bay.
"After they've been there some months they'll realize things are not working. But with cancer, you get one chance. By the time they get back to a reasonable hospital, they're dead. Nothing can be done for them," she said.
Ways that supplements and fringe therapies can harm:
_Financially. Pills that seem cheap actually cost a lot if they are worthless or are bought in place of real medicine, fresh fruits and vegetables, or other things known to boost health. They also can hook people into spending more for multi-pill "protocols" that make broad claims like "boosting the immune system." One Florida man worked his way up to several hundred dollars worth a month for pills whose contents he didn't know, pushed by a California chiropractor.
_Medically. Trying an alternative remedy can delay the time until a patient receives an effective treatment, allowing the cancer to spread. A potentially curable cancer may become untreatable -- as Leslee Flasch found out when she belatedly sought the surgery that had been recommended. Having such an advanced cancer without standard medical care must have caused excruciating pain, said one of her physicians, Dr. Lodovico Balducci at Moffitt Cancer Center in Tampa.
_Physically. Supplements, even those claimed to be natural, have biological effects and can interact dangerously with a wide array of medicines. People often do not realize this and fail to tell doctors everything they are taking, potentially compromising their care. Some vitamins and herbs can lower the effectiveness of chemotherapy, radiation and hormonal treatments for cancer.
_Psychologically. Futile treatment raises false hope and deprives people of the chance to prepare for the end of life and die in dignity and comfort.
Mary Nedlouf paid that price. She traveled from Orlando, Fla., to a Connecticut doctor who offered to treat a breast cancer that others called incurable. Her husband, Said Nedlouf, said the doctor asked about traumatic events in her childhood to "get to the roots" of her disease. The doctor also passed a wand over her and said he detected a problem with her liver. His treatments were as strange as his diagnostic methods.
"Mary would scream sometimes because those electrical things, those zappers that he put on her, would hurt," Nedlouf said. "What do you do? We're thinking she's getting something, some treatment that's a cure. She wanted to believe, and I wanted to believe for her."
After three months of lost wages and $40,000 to the doctor, Nedlouf said he spent another $13,000 for an air ambulance to take his wife home. She died three weeks later at age 42.
"She suffered. And we lost all this money," said Nedlouf, who filed a complaint in 2007 against the doctor with the Connecticut Department of Public Health that is still pending.
A more common situation is people loading up on vitamins and supplements in a misguided effort to do all they can to beat cancer, or to try to make up for poor health habits in the past.
Leslee Flasch believed that dietary supplements would make her stronger and help fight the cancer -- a belief her other surviving sister, Donna Flasch, still shares despite Leslee's death.
But getting nutrients from pills is different than getting them from a balanced diet, nutrition experts say.
"So many people think, 'Well, if a little bit is good, then more is better,' and that's definitely not true with most dietary supplements," said Kathy Allen, a Moffitt Cancer Center dietitian.
Examples of potential harm:
_Vitamin E can prolong bleeding time and has forced cancellation or delay of cancer surgeries; some studies suggest it may raise the risk of certain cancers.
_Beta carotene, a precursor of vitamin A, may raise smokers' risk of developing lung cancer.
_Folic acid supplements may raise the risk for precancerous growths in the colon.
_Vitamin C in large doses may help cancer cells resist chemo and radiation.
In January, doctors reported that a selenium supplement containing kelp -- which is loaded with iodine -- was interfering with the low-iodine care recommended for a man with thyroid cancer.
Herbals and dietary supplements can undermine cancer treatments in ways that patients can't feel and doctors can't measure. When a treatment fails, it's impossible to say whether it was due to the person's cancer or because a supplement subtly interfered.
"We know that there's some harm going on. We just don't know the magnitude of it," said Dr. Jeffrey White, the National Cancer Institute's complementary and alternative medicine chief.
Studies show that as many as two-thirds of cancer patients who use unproven remedies do not tell their doctors. Sometimes it is because they fear doctors will disapprove, but often it is because they do not realize it can harm their care.
"I didn't think they were medications. They're not prescription, they're not drugs. This is all natural substances, made from natural products," said Vince Palella, a Bradenton, Fla., prostate cancer patient.
During a nutrition counseling session, a Moffitt dietitian, Diane Riccardi, discovered that Palella was taking dozens of pills a day, including a saw palmetto extract. That supplement might have interfered with his hormonal cancer treatments or the monitoring to see if the those treatments were working.
"There's absolutely no way of knowing" if it did, Riccardi said. "The products he was taking were not highly purified -- they were a mishmash," including some labeled "raw herbal extracts," she said. Companies often claim their formulations are trade secrets and do not disclose all ingredients or amounts.
"It's as difficult as finding out what the recipe is for Coca-Cola" to try to decipher what's in them and whether they pose a risk, she said.
Another supplement that can pose a risk for prostate cancer patients is DHEA, which can affect testosterone levels, said Phyllis Matthews, a urology nurse practitioner at a group of Veterans Affairs clinics in the Denver area.
Cancer doctors also worry about isoflavones and other soy-related supplements; some research suggests they might stimulate breast tissue. Breast cancer patients on tamoxifen or aromatase inhibitors like Femara or Arimidex should not use red clover, dong quai or licorice because of estrogen-stimulating components, say guidelines from the Society for Integrative Oncology, a group of cancer experts that Cassileth heads.
Cancer survivors must be careful, too. Using a 2005 nationwide survey, Dr. Richard Lee of the University of Chicago found that half of survivors using supplements were at risk of problems because of other medicines they were taking.
He documented 116 potential interactions, including 9 percent that were major or possibly life-threatening. They included bleeding risks from combining ginkgo and aspirin, and heart rhythm, high blood pressure, and serious muscle problems from taking St. John's wort and Prozac or similar antidepressants.
Supplements also can be dangerous by themselves. Balducci, the cancer specialist at Moffitt, had a leukemia patient who was taking red yeast rice extract, which has been linked to a number of health concerns.
"It caused terrible damage to her liver" and prevented her from receiving chemotherapy for her cancer, which got worse and killed her, he said. Ironically, she was taking the supplement to boost her immune system -- a deceptive claim that has ensnared many cancer patients, including Palella, the prostate cancer patient.
"There are no herbal or vitamin supplements that we know of that will specifically boost the immune system," said Allen, the Moffitt dietitian.
White, at the National Cancer Institute, is angered by ads that tout test-tube results or that make scientific claims like "stimulates T cells" without any evidence that the same substance taken in pill form, or that the T-cell effect described, makes any difference in patients' survival.
"These kinds of leaps are just not acceptable. The purpose of that is to mislead people," he said.
Here, the government does have some authority. In June, the FDA sent 25 warning letters to sellers of teas, pills and other products sold on the Internet that falsely claim to cure, treat or prevent cancer.
The substances included bloodroot, shark cartilage, coral calcium, cesium, ellagic acid, cat's claw, Essiac tea and various mushrooms.
In September, the Federal Trade Commission charged five companies with making false and misleading claims for cancer cures and reached settlements with six others. The agency also started a bogus cures Web site to help consumers. A statement explained its reasoning:
"When you're battling cancer, the last thing you need is a scam."

As the Stomach Turns

I saw Dr. S on Friday and he told me to mix Benadryl cream with Aveeno half and half to put on my face and neck. He also gave me some ear drops because the same thing that is happening on my face is happening in my ears. I am on Day 15 and my face has completely peeled but it is still a little red, my neck is still quite itchy and it is still peeling. Now Dr. A thinks this is an allergic reaction to the antibiotics I was on. (Avelox once a day for 5 days.) Dr. S said I should also try taking a multivitamin again if I can. I stopped taking them because they upset my stomach which he said can happen even when you are not having chemo. I tried today and now I am getting the heartburn and my stomach is on fire so I had to take some anti nausea meds again. Too bad because I am still quite low on energy, I can do a little in the morning and then I need to nap in the afternoon. I usually don’t feel too well when I wake up though. My eyes are watering (a side effect from the chemo) and my mouth still feels like sandpaper. This time around I can’t really eat much as I don’t have much appetite and when I do eat everything just tastes wrong. Anything sweet tastes bitter as does water. Most other stuff (meat, yogurt) feels chalky. A little pasta is about all I can stomach. With the low blood counts they said I should stay away from raw veggies that are hard to wash like lettuce and grapes. The guys were eating chips the other day and since the mouth sores are gone I tried a few. Well, my mouth felt like it was coated in grease! GROSS – that might have cured me from having them for a long time! Just one more week and I have to start over again – UGH.

Taxotere is Evil!

I was doing pretty well for the first two days. Even went for a walk to the bank and post office on Thursday. On Friday I was starting to feel kind of achy in my joints and bones (like when you have the flu) and my whole mouth felt like I scalded it with hot soup. By Saturday I was just completely worn out. I could hardly move. It took all my strength just to roll over or to sit up for a drink of water. On Sunday I got a fever and I was instructed to go to emergency if my temperature went to 38 as this can mean I have an infection. So somehow I mustered up the strength to get dressed and haul myself out to the car. The ER doctor had my blood tested and he thought my blood was okay. He did write me a prescription for antibiotics but wanted me to call my oncologist Monday morning before filling it. Dr A’s nurse had them fax my results to them and he said I definitely need to be on the antibiotics. Too bad I didn’t start them the day before because today (Wednesday) is the first time I have the energy to do more than sit up for 5 minutes. My mouth is so sore that I can’t eat much. What I do eat I can’t really taste and everything feels like chalk and hurts all the sores in there. I have the white coating on my tongue again. My face started to get flushed on Sunday and today it is still flaming red, hot to touch and raw. I have cold sores too! My neck and chest are red and itchy. After being constipated since the beginning of all this I am now going the other way. I don’t know which is worse. Not sure if I can do this two more times… I am really happy that I am well enough to be able to go and watch Roxanne’s convocation tomorrow.