I didn't have any additional pain or side effects coming off the steroids, but everyone is different, too. I felt better after no more side effects from the steroids, actually.
With the radiation, she will have a hard time tasting food. I recommend plastic utensils, the stainless seems to have a taste. I know it sounds odd, but it did help to use plastic. :)

This is what I think of my diagnosis today...

I’ve battled wars not mine to wage
I’ve fought the fight with endless rage.
I’ve been triumphant and stood my ground,
So cancer won’t beat ME this round!
The fighter inside me will stand strong
And battle ‘til this demons gone.
I’ll rally allies to help my plight
And let their love carry on my fight.
If I should falter on this road
I’ll call my family to lighten my load.
For I know I’m loved with faith abound,
So cancer won’t beat me-not this round.
In love’s name I rally all I need
To win this battle, and to succeed.
I’ve fought my battles, won them all
Cancer won’t be my final call!

Heavenleahangel,

I am very sorry that you have received a diagnosis of cancer. I have not heard of this type of chemotherapy. My knowledge base is pretty limited to colon cancer chemotherapy and I have some knowledge of breast cancer treatment.

I am also sorry that you do not have any close friends or family near by. You may want to look into cancer support groups in your area. Wherever it is you are getting your infusion should have this information.

Also, know that we are here and you are welcome to come and post, daily! Even though we have not all been through the same chemotherapy, we may have tips to deal with the various side effects. At the very least, we are here to listen.

The whole thing can be very scary, but know you will get through it.

Take care of you.

Heavenleahangel,

Welcome to the best support group you could ever not want to be a part of! :rrose: Like Dapper, I'm not too familiar with bone cancers, but I can sure give you a cyber hug when you need one! My partner and I both went through cancer this year and are both doing GREAT! I'm so sorry you are facing this with a little one to care for on your own.Just know there are a lot of fabulous people here who will help lift you up when you feel too tired to make a go at it on your own.

Much love and light,

Novela

Hi there,
Cancer makes you scared, and quiet, and lonely and then, it makes you realize there are things you need to do, and you fel feirce and feisty. We all have a story and a walk along the path, and well, our commonality is knowing we really are goint to be okay.

Besides all the Doctor appointments, tests, medication, chemo, radiation , and on and n, you will need to add fun stuff back into your life.

Sending you bear hugs and chocolate truffles. Tmmi

Dear Heaven, I just saw your post and want to jump in and assure you that you will not fight this battle alone. There are many amazing people on this thread who will support you and keep you in their hearts and prayers. I am not familiar with that particular chemo drug but I have taken the chemo ride.
Please feel free to pm me if you wish and I will also watch for updates from you on here.I love your poem.
Sending healing energy and love to you. Jean

Hi Heaven so sorry to hear of your troubles...

Make sure you pay close attention to the side effects of Aredia, I did some research on Web MD not wanting to scare you just want to make sure you are WELL informed.

My prayers and thoughts are with you and your young man and I hope you have a speedy recovery.

[[[[[[[ hugs]]]]]]]]]]

Hang in there Heavenleah. We're all praying for you.

morning Heavenleahangel......I know all of this is so overwhelming for you, and for Jacob! He can "sense" your stress and "feel" it also! So yes, he does know something is up. All you can do is to continue with his routines as close to the same as possible. Spend quality time with him, reassure him, and be as positive as possible with all of this...a lot to try to do, yes, BUT it will help allay his fears, too!
The website WebMd has the best and most correct information on this drug! It even has reviews from people who actually took it. It is so easy to want to read all one can and that can get confusing and frightening in itself. Just try to think as positive as possible and keep yourself in a state of calmness..and think in terms of this is going to make me so much better...yes there are "possible" side effects but that doesn't mean they will all mainfest. The most folks get with chemo side effects is flu like symptoms and bone pain. They usually give Zometa to help with that...the main and most important thing to remember is that your immune system will be compromised. YOU need to stay as healthy as possible...people will, SHOULD understand! It is of UTMOST importance that you keep visitors to a bare minimum, keep everyone with any kind of sniffles and cold symptoms away from you! Set up lots of bottles of hand sanitizers all over the space you will be in....you should keep yourself to a confined space as much as possible...durting the treatments...to protect YOU from germs and colds. HANDWASHING is of the single most importance..as well as keeping you hydrated and well stocked in Vitamin D and Calcium!!!Please know I am offering all of this advice having gone thru this with my deceased wife...and as a Nurse!
Positive and upbeat outlook
No visitors during treatment (anyone who has to be around you should have a flu shot as well!!!)
Quality time with Jacob & reassure him...
Vitamin D & Calcium
Hand Sanitizers by the Gallons
Hand soap and LOTS Handwashing!
Smile...deep breathe...we are all here for you, my friend!!!
Read WebMd and reviews...
I am here for you at any given time!!
Big hugs lady..Clay

Clay,

With all due respect, the above is not true for everyone. Many people have a hell of a lot more than flu like symptoms and many people do not have bone pain. It depends on the chemo drug and it depends on the person.

Additionally, please be careful making suggestions as to which vitamins or supplements a person should take. I went over a list of supplements with my oncologist and she picked and chose which ones were ok to take while I was on chemotherapy. For example, green tea is an excellent antioxidant, and I take it in large doses...NOW. It would have resulted in toxicity if I had taken it while I was doing my chemotherapy. The drugs used in chemotherapy are different depending upon the type of cancer and depending upon the person. Vitamins and supplements are drugs. Just like any other drug, we need to make sure that our drugs work in harmony.

I am not trying to bust your chops here, I just want to point out that we really need to be hesitant giving out medical advice to people, especially when it comes to medications people can get over the counter.

I have to step in and agree with Dapper. I know your advice is coming from good intentions Clay, but many people did that with my mother....and she was spending a fortune on supplements that were actually hurting her.

Yes, we have made changes in her care...but every single step was okayed by her doctor...even something as mild as adding Pedialyte to battle her dehydration.

Drugs, chemo, over the counter medications, supplements, even food....can have negative interactions....and no two people are alike. I'm a huge advocate of researching and learning all you can...online and from people who have/are living it....but ultimately I am a bigger advocate of checking EVERYTHING with your doctor first.

Also, I'm not a huge fan of WebMD and have found some downright incorrect information on that site. Personally, I prefer the American Cancer Society or The Mayo Clinic sites.

keeping the best thoughts for you and Jacob.

HUGE Sigh of relief!!!!!!

Just got back from the oncologist and my partner's CA125 was THIRTEEN!!! WOHOO!!! He did a pelvic exam and found no swollen or enlarged tissue or nodes. He feels 99.99999% sure she is cancer free!!! WOHOO!! We were all jumping up and down and hugging and crying.

We are so blessed and I am so thankful to have this support group here.

I didn't sleep well last night in anticipation of today so I'm gonna rest my eyes.

Lots of love, Novela :bunchflowers:

Wonderful! <High fives all around>

EXCELLENT NEWS. Thank you for sharing it with us.

Sending positivity and energy your way

There will be a large group with you in spirit. Anxiety and fear are certainly to be expected. Try to do some slow deep breathing when you are feeling that way. Some people try to visualize the chemo as an ally in your defeat of the cancer.
Keeping you in my thoughts and prayers. Jean

Heavenleahangel,
Mustangjeano is right. We all will be with you on Monday. I'll put you on the Unity prayer list.
Sending out positive energy to you for your peace of mind and for healing.

NorthWestern Conformation:
 

credits attached:
Popular herbal supplements may adversely affect chemotherapy treatment

Doctors urge cancer patients to discuss supplements with their doctors before beginning treatment

CHICAGO- Acai berry, cumin, herbal tea, turmeric and long-term use of garlic – all herbal supplements commonly believed to be beneficial to your health – may negatively impact chemotherapy treatment according to a new report presented at the American Society of Clinical Oncology (ASCO) meeting in Chicago this summer. Researchers from Northwestern Memorial hospital say there is growing evidence that these popular supplements may intensify or weaken the effect of chemotherapy drugs and in some cases, may cause a toxic, even lethal reaction.
"With the growth of the Internet, patients have better access to information about alternative products and often turn to dietary and herbal supplements to treat their illness because they think they're natural and safe," said June M. McKoy, MD, geriatrician at Northwestern Memorial Hospital and lead investigator on the ASCO presentation. "What people don't realize is that supplements are more than just vitamins and can counteract medical therapies if not taken appropriately".
McKoy, who is also director of geriatric oncology at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, says more research is needed to understand which supplements interact with chemotherapy drugs and the extent of those interactions and encourages patients to openly communicate with their physicians about the use of supplements.
"Patients need to tell their doctors what medications they are taking – including vitamins and supplements – to avoid any possible interaction," said McKoy who is also an assistant professor of medicine and preventive medicine at Northwestern University Feinberg School of Medicine.
Herbal supplements, defined as plant or plant parts used for therapeutic purposes, can interact with chemotherapy drugs through different mechanisms. Some herbs can interfere with the metabolism of the drugs, making them less effective while other herbs such as long-term use of garlic may increase the risk of bleeding during surgery. While culinary herbs used in small quantities for flavoring are generally safe, consuming large amounts for prolonged periods of time may have a negative effect on the body when going through chemotherapy.
Recent research shows that 50 percent of patients undergoing chemotherapy did not tell their doctor they were taking alternative therapies. "Some believe it's not important, while others are uncomfortable admitting they are pursuing alternative therapies," said McKoy. "The truth is, integrative approaches can be beneficial for cancer patients, but it's important to take these approaches at the right time and under the supervision of your doctor."
McKoy urges patients to stop taking herbal supplements while receiving chemotherapy until more is known about possible interactions, but encourages those who are interested in complementary approaches to have a conversation with their doctor about other approaches that may be beneficial.
"Integrative therapies such as massage, acupuncture and meditation can address important patient needs by alleviating stress, addressing pain and helping patients cope," said Melinda Ring, MD, medical director for the Northwestern Memorial Physicians Group's Center for Integrative Medicine and Wellness.
No matter the course of treatment, McKoy stresses the importance of physicians and patients being more cognizant of this potential interaction and encourages communication about all herbal supplement intakes. "Patients should bring in labels and bottles to their appointments. This can help the doctor calibrate drug dosage with other supplements in mind in order to prevent toxicities," stated McKoy.
McKoy plans to launch a pilot study this fall to examine how frequently conversations about supplements come up between cancer patients and their doctors.
"By identifying communication barriers, we can take steps to improve doctor patient communication in order to prevent potentially dangerous drug interactions," said McKoy.

For more information please visit www.nmh.org or call 312-926-0779.

About Northwestern Memorial HealthCare Northwestern Memorial HealthCare is the parent corporation of Chicago's Northwestern Memorial Hospital, an 854-bed academic medical center hospital and Northwestern Lake Forest Hospital, a 205-bed community hospital located in Lake Forest, Illinois.

Well....we are up and down over here.

Mom has started chemo again...the "modified" chemo she had high hopes for. Turns out it makes her just as sick...and she will still have to have it every 2 weeks....basically for as long as she can stand it.

Right now she is in the first couple days after the treatment....which means lots of sleeping, lots of depression, lots of anger and tears, lots of throwing up, and lots of conversations that are pretty rough on both of us about is it better to live a long time miserably or a short time feeling relatively normal?

Given the level of abdominal pain she has I think the "relatively normal" part is a moot point.

She has not gone back onto the morphine, but has had to up the number of Lortab she takes each day....and is still using the Fentanol (sp?) patches as well.

We have fixed the dehydration problem, which helps...and she is still eating better and managing to keep the weight up (after a brief issue when she got overly cocky and ate salad and pizza in the same day). Her goal is to hit 130 lbs so she can go off the TPN and get the Pict line out.

Evidently the issue, for her, is that she is literally freckled inside with punctate lesions all over the external tissue of the small intestine, liver and kidneys. These are cancer, but can stay "dormant" (for lack of a better term) indefinitely...perhaps longer with chemo although they can't tell us that for sure....or can become active and develop into tumors at any point.

The only procedure that is possible is called a "belly bath" or "belly wash"....and she is in no way strong enough to survive it. Even with the procedure....chances are it won't eliminate the problem. Her doctors don't recommend that she have it, at this point anyway, because she is more likely to die on the table than have it help her.

Right now....it's one day at a time....a little better now that she can eat and drink....but still very, very rough.

OMG Heavenleah, I was thinking about you just a little while ago and sending healing energy for a smooth and uneventful chemo appt. tomorrow. I wonder if they will postpone the chemo if you have a broken ankle. Do you have someone going with you? Yes, please keep us updated. Sending prayers to you now and tomorrow.
Jean

Jo, I can only imagine how terribly hard this time is for your Mom and you. Keeping you in my thoughts and prayers.

Heaveanleahangel,
I put your name on the Unity prayer list. It's prayed over locally for 30 days and then to Silent Unity for another 30.

I will keep you in my prayers myself.

JustJo,

I'm keeping you in prayer, too.