Author Topic: GOD PLEASE HELP ME!  (Read 9355 times)

lighthouse33

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Re: GOD PLEASE HELP ME!
« Reply #15 on: February 18, 2014, 10:48:16 AM »
Side Effect: Loss of appetite

Feeling nauseous from your chemotherapy or radiation might cause you to lose your appetite. It is important to make an effort to continue good nutritional practices even if you don't feel like eating. Eating balanced, nutritious meals provides you with the energy you need and fuel for your body to recover from your treatment, maintain or gain weight, and to help fight infections.

Recommendations:

During your hospital stay, you might be unable to eat a well-balanced diet due to nausea, vomiting, mouth sores, or loss of appetite. If these side effects prevent you from maintaining proper nutrition, your doctor might want to give you intravenous nutrition, depending on your specific nutritional deficiencies.

After you are discharged from the hospital, you might continue to have side effects from your treatment (such as decreased appetite, taste changes, mouth sores, dry mouth, or diarrhea). These side effects might prevent you from trying to maintain good nutrition. Over time, many of these problems will improve.

Here are some suggestions to increase your appetite:

Eat small, frequent meals or snacks from 6 to 8 times a day.

Drink beverages after meals instead of before or during a meal so you do not feel as full.

Try to eat more protein and fat and fewer simple sugars. Eggs, fish, and high-protein puddings will provide you with high nutritional content and high protein in small portions. Custards, peanut butter, ice cream, yogurt, peas, beans, and nuts are also high in protein.

Don?t waste your energy eating foods that provide little or no nutritional value (such as potato chips, candy, colas, and other snack foods).

http://my.clevelandclinic.org/services/bone_marrow_transplantation/hic_how_to_cope_with_high-dose_chemo_and_radiation_therapy_side_effects.aspx
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Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
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lighthouse33

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Re: GOD PLEASE HELP ME!
« Reply #16 on: February 18, 2014, 10:51:52 AM »
Side Effects: Dry Mouth
Recommendations:

Rinse your mouth with water before meals.

Chew your food completely. Sip liquids frequently while eating to keep food moist and to help with swallowing.

Drink 6 to 8 eight-ounce glasses of fluid per day.

Gargle with club soda or add lemon or lime to water to thin saliva.

Try to eat soft foods with sauces, dressings, broths, sour cream, or gravies to make the food easier to swallow.

Try dunking your foods, such as bread, into soups to moisten them.

Suck on ice chips or sugar-free gum or candies to keep your mouth moist.

Liquid nutritional drinks might be helpful when your mouth is most dry.

Artificial saliva and Biotene? products might relieve a dry mouth. Ask your health care provider for more information.

Side Effect: Mouth sores

Mouth sores are common after chemotherapy. They can make it difficult to eat and drink. You will be instructed on how to perform daily mouth care. It is important to perform this mouth care as instructed. The healthier you can keep your mouth, the less likely an infection will occur.

Recommendations:

To prevent mouth sores:

In the hospital, you will be given mouth care products and instructions on how to use them. You will use two types of mouth rinses daily to keep your mouth clean. You are expected to perform your mouth care independently several times a day. 

Do not use commercial mouthwashes or lozenges.

Patients can brush their teeth after each meal with a small, soft toothbrush and fluoride toothpaste.

Prepare a gargle by dissolving ? teaspoon each of salt and baking soda into 8 ounces of warm water. Rinse your mouth and gargle with this solution at least 4 to 6 times a day, especially after meals and before going to bed.

Use dental floss daily, if allowed by your doctor.

If mouth sores develop:

If you are able to eat, eat slowly. Cut your food into small pieces and chew it completely.

Eat foods that are warm or at room temperature. Avoid hot foods and drinks.

Eat soft foods. A soft diet can be prescribed for you, if necessary. Talk to your health care provider about a soft diet.

Liquid nutritional drinks might be helpful when you have mouth sores.

Avoid crunchy foods such as potato chips and nuts.

Drink liquids through a straw to make swallowing easier.

Do not talk with food in your mouth.

Avoid eating or drinking acidic foods and beverages such as tomatoes, oranges, grapefruits, and their juices. Instead, try nectars and imitation fruit drinks with vitamin C.

Avoid carbonated beverages.

If you are unable to eat due to your mouth sores, your health care providers will monitor you nutritional status very closely.

You will be given pain medicines intravenously to control or decrease the discomfort caused by the mouth sores while you are in the hospital.
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

lighthouse33

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Re: GOD PLEASE HELP ME!
« Reply #17 on: February 18, 2014, 10:53:20 AM »
Side Effect: Skin rash

A skin rash or other irritation might occur because of chemotherapy, an allergic reaction to a medicine, or from an infection. Allogeneic transplant might also experience skin rashes from graft versus host disease. (See section on GvHD for more information.) A skin biopsy might be required to diagnose your skin rash. In this procedure, a small sample of skin is removed and examined under a microscope.

Most skin rashes improve but require time for healing.

Recommendations:

Gently cleanse the affected area using lukewarm water and mild soap. Do not rub your skin. Pat your skin dry with a soft towel.

Do not scratch or rub the affected area.

Do not apply any ointment, cream, lotion, or powder to the affected area unless it has been prescribed.

Do not apply cosmetics, shaving lotions, perfumes, or deodorants on the affected area. Use only an electric razor if you need to shave within the affected area.

Do not wear tight-fitting clothing or clothes made from harsh fabrics such as wool or corduroy. These fabrics can irritate the skin. Instead, choose clothes made from natural fibers such as cotton.

Do not apply medical tape or bandages to the affected area unless you are told to do so by your health care provider.

Do not expose the affected area to extreme heat or cold. Avoid using an electric heating pad, hot water bottle, or ice pack.

Do not expose the affected area to direct sunlight. Sun exposure might intensify your skin reaction and lead to severe sunburn. Wear a large-brimmed hat or protective clothing to minimize sun exposure. Choose a sun block/sunscreen of SPF 30 or higher. Continue to protect yourself from the sun even after your course of treatment has been completed.
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

lighthouse33

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Re: GOD PLEASE HELP ME!
« Reply #18 on: February 18, 2014, 10:54:31 AM »
Side Effects: Hair Loss

Hair follicles are very sensitive to radiation and chemotherapy. Both of these treatments cause hair loss. Hair loss might be temporary or permanent. If your hair loss is temporary, it might start to re-grow about 3 to 6 months after your transplant. You might notice that when your hair begins to re-grow, the texture or color is different than before.

Recommendations:

This side effect can be very upsetting. Talk to your nurse or social worker about wearing scarves, hats, or a wig.

Ask about ?The Look Good, Feel Better program,? which is sponsored jointly by the American Cancer Society; the Cosmetic, Toiletry and Fragrance Association; the National Cosmetology Association; and the Cleveland Clinic Cancer Center. All participating patients receive a complimentary gift bag of skin care and cosmetic products.

Avoid frequent shampooing. Use a mild shampoo (such as baby shampoo) without any perfumes.
Wash your scalp with warm water. Avoid rubbing and do not scratch. Pat dry with a soft towel.

Avoid excessively combing or brushing your hair.

Avoid using hair spray, oils, or creams
.
Avoid using heat sources on your hair (including hair dryers, rollers, or curling irons). Do not perm or color your hair. Ask your health care provider when you can go back to coloring or perming your hair.

Protect your head from the sun, cold, and wind by wearing a head covering (such as a cap, turban, scarf, or hat made of cotton or a cotton blend).
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

lighthouse33

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Re: GOD PLEASE HELP ME!
« Reply #19 on: February 18, 2014, 10:56:18 AM »
Side Effect: Fatigue

Everyone has a different level of energy, so bone marrow transplantation will affect each patient differently. Many patients might require a full year to recover physically and psychologically from their transplant. Even after that, life might not return to the ?normal? you had experienced before your bone marrow transplant. You might find that you need to permanently change your lifestyle to prevent fatigue, avoid infections, and cope with the long-term effects of treatment.

During your recovery, you will feel fatigued and weak. You will also have a decreased appetite. It will take some time to regain your strength and ability to participate in daily activities. Each person's recovery varies. You might find that it takes several weeks to many months to resume your daily activities.

The time following your transplant is a time of cell recovery and growth of your new marrow and re-growth of cells in your mouth, stomach, intestines, hair, and muscles. This growth requires calories and energy, and might explain why you feel more tired than you anticipated.
Recommendations:

Evaluate your level of energy. Think of your personal energy stores as a ?bank.? Deposits and withdrawals have to be made over the course of the day or the week to balance energy conservation, restoration, and expenditure.

Keep a diary for one week to identify the time of day when you are either most fatigued or have the most energy. Note what you think might be contributing factors.

Be alert to your personal warning signs of fatigue. Fatigue warning signs might include tired eyes, tired legs, whole-body tiredness, stiff shoulders, decreased energy or a lack of energy, inability to concentrate, weakness or malaise, boredom or lack of motivation, sleepiness, increased irritability, nervousness, anxiety, or impatience.

Plan ahead, organize and prioritize your daily activities. Change storage of items to reduce trips or reaching. Decide which activities are important to you, and delegate other tasks/activities when needed. Combine activities and simplify details.
Schedule rest. Balance periods of rest and work. Rest before you become fatigued. Frequent, short rests are beneficial.

Pace yourself. A moderate pace is better than rushing through activities.

Exercise daily. Walking is an excellent way for you to regain your strength and stamina. Eat a well balanced, nutritious diet.

Manage stress. Managing stress can play an important role in combating fatigue. Adjust your expectations and ask others for support and help.

Talk to your health care providers. Although fatigue is a common, and often expected, side effect of cancer and its treatments, mention your concerns to your health care providers. There are times when fatigue might indicate an underlying medical problem. Other times, there might be medical interventions to assist in controlling some of the causes of fatigue. Finally, there might be suggestions that are more specific to your situation that would help in combating your fatigue.
Be sure to let your doctor or nurse know if you have:

Increased shortness of breath with minimal exertion.

Uncontrolled pain.

Inability to control side effects from treatments (such as nausea, vomiting, diarrhea, or loss of appetite).

Uncontrollable anxiety or nervousness.

Ongoing depression.
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

lighthouse33

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Re: GOD PLEASE HELP ME!
« Reply #20 on: February 18, 2014, 10:57:21 AM »
Insomnia (difficulty sleeping)

Many patients have trouble sleeping during their hospital stay. You might experience insomnia because of discomfort from nausea, mouth sores, or other problems. Changes in your daily routine or stress from your personal concerns might also be factors.

If necessary, you might be given a prescription medicine to help you fall asleep.

Practice relaxation techniques such as mental imagery, deep breathing, reading, or listening to calming music.
 
Make sure you are comfortable. Arrange your pillows so you can maintain a comfortable position.

Avoid napping too much during the day. At the same time, remember to balance activity with rest.
 
If you feel nervous or anxious, talk to your spouse, partner, or a trusted friend. Get your troubles off your mind. Your social worker can meet with you for individualized counseling and is available to meet with you on the BMT unit.
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

angeldancer

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Re: GOD PLEASE HELP ME!
« Reply #21 on: February 18, 2014, 11:42:36 AM »
I thank all of you for the responses.  This is way more difficult and I need to research some other ways of treatment.  Thanks for all the mouth sore reports and I will start on them all including the baking soda.  I will get my son to walk to the store for me.  I guess I am depressed right now and I know it will go away.  It has to.  It has to be another way for healing.
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

LucyD

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Re: GOD PLEASE HELP ME!
« Reply #22 on: February 18, 2014, 07:48:17 PM »
Dearest Angel,

I am so sorry you are going through this.

I wish we all lived in a community physically close to you so we could support and care for you.

Please make sure your doctors know how much you are suffering from the chemo and ask them to offer help.

Sending love and care.

LucyD
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

susanep

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Re: GOD PLEASE HELP ME!
« Reply #23 on: February 18, 2014, 08:07:58 PM »
Bless your heart. I cannot imagine your pain. You are in my prayers.

susanep
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warmwaters

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Re: GOD PLEASE HELP ME!
« Reply #24 on: February 18, 2014, 09:43:27 PM »
I have nothing other than to add my best hopes for you. May all of your pain improve quickly.

To others who have offered a wide range of practical advice, you guys rock. I find this such a helpful community.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

grammad97

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Re: GOD PLEASE HELP ME!
« Reply #25 on: February 18, 2014, 09:54:53 PM »
Oh Angeldancer-
My heart breaks to hear you are in pain and hungry.
I have no advice for the sores you are experiencing.
Sucking on ice chips has numbed my sore throat in the past.
I pray you have better days ahead.
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss

SjoDry

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Re: GOD PLEASE HELP ME!
« Reply #26 on: February 19, 2014, 05:51:05 AM »
Hi Angeldancer,

I am so sorry that you are having to deal with this.  I have some information for you. My co-leader of our Sjogren's Support Group (also named Sandy) is a professional who has been teaching &
lecturing on dry mouth for many years. Specifically, Sandy does a lot of lecturing about dry mouth from the effects of cancer & radiation treatments and also Sjogrens. Ironically, Sandy had been teaching for 11 years and then became a survivor of stage 4 head & neck cancer. I emailed Sandy your email post. She is in the midst of traveling, but sent me a quick email back to give to you. Also, she said she would be happy to speak with you. I will send her telephone number to you in a private email. She will always answer unless she is lecturing or traveling on a plane or something. I hope this will be helpful to you.

From Sandy:
Please ask her 2 call her dentist & request neutrasal & episil prescriptions ( until she can do that she can use 1 teas of baking soda in 1 cup water room temp water, take mouthfuls &  hold in mouth count to 60 & use entire cup every 2-4 hours.  

I hope things will soon get better for you.
SjoDry (Sandy)

Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

cccourt1942

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Re: GOD PLEASE HELP ME!
« Reply #27 on: February 19, 2014, 08:41:51 AM »
is it possible she has thrush?  Candiadisis? (SP)???
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

lighthouse33

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Re: GOD PLEASE HELP ME!
« Reply #28 on: February 19, 2014, 09:49:44 AM »
Toms of Maine Clean and Gentle SLS Free Anticavity Peppermint Whitening Toothpaste

This was recommended online by people who have had chemo.  I got it for my mom after her chemo and now she uses nothing else.

Toothette Individual Oral Swab

Mom uses these a lot of dry mouth and she says it makes her mouth feel good.  She was introduced to these in the hospital.

AverTeaX? Natural Daily Lip Protector, for Everyday Use on Dry, Cracked, and Chapped Lips and for Cold Sores/Fever Blisters

I just purchased this product and have yet to try it out.

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Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

SjoGirl

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Re: GOD PLEASE HELP ME!
« Reply #29 on: February 19, 2014, 02:34:25 PM »
Such terrible flushing of the face is a sign of an allergy to Prednisone. Please discuss with your doctor. I can't taken anymore because I had that reaction last time I took it.

prayers for you Angel Dancer, may God hold you in the palm of his hand.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.