SpringerSpanielMommy wrote:I am having neoadjuvant chemo/radiation for 30 sessions over 6 weeks, starting this Wednesday. I will be taking 1500mg of Xeloda twice a day only on the days I am having radiation. Then I will be having systemic chemo and will be having a port put in at the end of this first 6 weeks of treatment, and then about a week break before the start of the next type of chemo. The goal is to downstage me and if possible get me to a complete response. Both my chemo onc and radiation onc consider my treatment curative, and are very optimistic.
I am at one of the top cancer hospitals in the US and have a really talented team of doctors. It is scary because I have never been sick, nor taken medicine. I have always powered through headaches without even Tylenol or Ibuprofen because I wanted to protect my liver and kidneys. So, becoming a Pharmaceutical Queen is way outside my comfort zone, and reading the drug inserts, holy cow!!!!!!!!!!!!
I am a very strong Christian and I am confident that King Jesus is stronger and Lord over cancer, apparently this is the path that I am to walk. So, I am looking for friends, people who are walking or have walked this path to come alongside me and help share this chapter of my life.
SpringerSpanielMommy wrote:Happy Easter Everyone! We spent the day with my daughter and her family, quite a nice time together. I was concerned that I may have had an obstruction as the doctor told me it was a possibility, with the location and size of my tumor. I have been taking 3 stool softeners a day since diagnosis and for the last 4 days taking Miralax too with nothing happening, except passing blood and pieces of tissue, which I hope is the tumor dying, until this afternoon, Yay!
In other news, I have 3 sores on my tongue which I guess is related to the Xeloda, and I started the baking soda rinse my doctor's sheet advises to do it that happens. Tomorrow I am back at the radiation treatments for 5 days, and I do not know if this is related to the radiation or the Xeloda, as it was not mentioned in any of the paperwork I have received, but I have a very sore spot at the opening of my vagina, which is quite red, so can you get sores there too? This is not something I have ever had before......
SpringerSpanielMommy wrote:Happy Easter Everyone! We spent the day with my daughter and her family, quite a nice time together. I was concerned that I may have had an obstruction as the doctor told me it was a possibility, with the location and size of my tumor. I have been taking 3 stool softeners a day since diagnosis and for the last 4 days taking Miralax too with nothing happening, except passing blood and pieces of tissue, which I hope is the tumor dying, until this afternoon, Yay!
In other news, I have 3 sores on my tongue which I guess is related to the Xeloda, and I started the baking soda rinse my doctor's sheet advises to do it that happens. Tomorrow I am back at the radiation treatments for 5 days, and I do not know if this is related to the radiation or the Xeloda, as it was not mentioned in any of the paperwork I have received, but I have a very sore spot at the opening of my vagina, which is quite red, so can you get sores there too? This is not something I have ever had before......
SpringerSpanielMommy wrote:...
I MUST know and understand what their procedure is before submitting to treatment and they told me:
1. There is a physicist in the property at all times.
2. There are extensive tests done daily before the machines can be used for therapy on patients.
3. There are test X-rays done before treatment to ensure while you are lined up with the laser marks matching up exactly on the marks on your body from the simulation in the exact same position (on my stomach, with a big hole in table for abdomen to fall through to move as much small intestine as possible out of the way, and a very full bladder pushing and protecting small bowel) the radiation oncologist ensures all looks perfect and then the very exact designed treatment is administered.
4. My radiation oncologist day to work there is Tuesdays.
5. I am being administered 45 grays in 25 fractions.
O Stoma Mia wrote:Collateral damage can be minimized by using radiation machines that target specific locations and that modulate the radiation intensity according to the regions that actually need some radiation. In this case, the level of collateral damage depends on the skill of the radiologist who is responsible for programming the machine to target certain areas and avoid other areas.
There are several companies that make linear accelerators (radiation machines) that do targeted radiation. When you meet with your oncologist you can ask which machine will be used in your case and what type of capability it has to target the radiation so as to avoid radiating critical adjacent organs or structures.
For rectal cancer, I think the big problem with collateral damage would be with radiation to the sphincter muscles. If intense radiation is allowed to creep into this area, then I think there will be problems in the future in getting the sphincter muscles to work properly. (This is just my personal opinion)
- Here are links describing a machine that has capability in IMRT and IGRT
Intensity Modulated Radiation Therapy / Image Guided Radiation Therapy -- a Varian Clinac® linear accelerator.
IMRT. Intensity-modulated radiation therapy will structure the dose to spare healthy tissue
IGRT. Image-guided radiation therapy pinpoints a moving target.
.- Here is a document describing the Varian Eclipse™ Treatment Planning System, which is what the radiation oncologist is trained to use in order to program the machine to avoid healthy tissues and organs:
Varian Eclipse™ Treatment Planning System
.- Here is a leaflet with a general overview of rectal cancer radiation therapy:
RADIATION THERAPY FOR CANCERS OF THE COLON, RECTUM AND ANUS
.- Here's a prior post on this Forum with a link to a video, in case you're interested:
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48458#p366423
Here is a direct link to the video mentioned above :
My Radiation Treatment for Colon Cancer
.- A special warning: When going in for a radiation therapy session, remember,
Do not bring your cell phone into the radiation bunker, otherwise it will likely be "fried" by the time your session is over.
Do not use any kind of zinc-oxide based cream on your skin because this can cause severe radiation burns (proctitis) due to the interaction between the radiation beam and the zinc oxide..
Zinc oxide induced radiation burns -- "...Although a general consensus among radiotherapy centres is lacking, the advice given to patients has a few commonalities:
• During or after radiation treatment, avoid the use of metallic-based topical products (zinc oxide creams)... because they may increase the surface dose to skin
• Wear loose-fitting clothing over the irradiated area to prevent friction injuries
• Maintain a clean and dry irradiated area
• Avoid extreme temperatures
• Avoid the use of starch-based products because they increase the risk of infection
Reference: Prophylaxis and management of acute radiation-induced skin reactions: a systematic review of the literature
Skin Reactions From Radiation
Radiation Therapy and Caring for Your Skin
SpringerSpanielMommy wrote:I have been really diligent using the Utterly Smooth cream twice a day for my hands and feet and am so grateful for that advice. I have been able to balance working and having my clients not know what is going on with my diagnosis or treatment as it would be destructive to my business. Any hints on what to do to power through the systemic chemo as strongly as possible will be appreciated. I will be taking oxaliplatin, 5 fu and leucovorin for 6 months.
O Stoma Mia wrote: Here is some information on FOLFOX.
- FOL-F-OX (infusion)
FOL - Folinic acid (Leucovorin) side effects
http://www.drugs.com/sfx/leucovorin-side-effects.html
http://chemocare.com/chemotherapy/drug- ... vorin.aspx
F – Fluorouracil (5-FU) side effects
http://www.drugs.com/sfx/fluorouracil-side-effects.html
http://chemocare.com/chemotherapy/drug- ... racil.aspx
OX - Oxaliplatin side effects
http://www.drugs.com/sfx/oxaliplatin-side-effects.html
http://chemocare.com/chemotherapy/drug- ... latin.aspx
.- Side effects log -
_MON____TUE_____WED____THU____FRI_____SAT____SUN__
.AM PM...AM PM....AM PM...AM PM...AM PM....AM PM...AM PM.
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Diarrhea
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Vomiting
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Nausea
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Mouth Sores
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hand-and-foot syndrome (HFS)
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fever or infection
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Stomach area pain
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Pain (other)
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Fatigue
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Constipation
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Loss of appetite
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dehydration
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Skin problems
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Hair loss
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Dizziness
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Headache
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Insomnia
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| Taste problems
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| etc..
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...|
.- FOLFOX Treatment Journals - Several members have posted journals of their FOLFOX experience. Here are some links:
FOLFOX Treatment Diary
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55011
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59205&p=468320#p468320
.- Medications for each side effect - For each of the major expected side effects, you should have a plan for treating the side effect at three possible levels of intensity, for example:
1. Mild level - Home remedies or over-the-counter preparations
2. Moderate level - Mild prescription medications or over-the-counter preparations
3. Severe level - Strong prescription medications
It would help to have the options identified in advance at these three levels for each major type of side effect (and approved by your doctor), although it may not be necessary to purchase everthing in advance. Some products may be hard to find, so it may be wise to do some research in advance to determine where you are going to obtain the products in case you ever need them.
It is important to be pro-active and start treating the problems early, as soon as they start to appear. There is a reason for this: Under chemo/radiation therapy the immune system becomes somewhat compromised and a bit dysfunctional. It takes a bit longer for medications and treatments to take effect, so you need to start the treatments early, at the first sign of a problem. If you decide to wait until the problem becomes almost unbearable, then this might be a bit too late for your immune system to step in, catch up, and quickly solve the problem. In a way, there is no point in taking a 'macho' approach by trying to be a hero by toughing it out. Now is the time when your body needs tender loving care by giving it some form of treatment whenever something starts going wrong.
.- Consent form - If you have not done so already, you will need to read and sign the hospital's "Chemotherapy Informed Consent" form. This is a form that describes the major risks and benefits of the treament procedure. I would recommend that you read your form thoroughly before you sign it, and be sure that any questions you might have are answered before you sign. Also, ask for a photocopy of the form that you have just signed. A sample template of such a form can be downloaded from the link below. Click on the link, and use the SaveAs option to save the file to the Windows Desktop. Then after the download is complete, open the file and look at its contents, in particular the section on "Risks/Side Effects of Proposed Treatment". This is where the main side effects of your treatment (FOLFOX) will be listed on the form that they give you to sign. Chemotherapy Consent Use and Discussion Guide
.- Book - I would recommend reading the following book, which gives a general introduction to chemotherapy without focusing on any particular drug. The emphasis is on how to deal with the main side effects that are common to most all chemotherapy regimens, i.e., nausea, diarrhea, fatigue, neuropathy, etc. It is a good guide for someone who has had no prior experience with chemotherapy
"Chemotherapy Survivor Guide: Everything You Need to Know to Get through Treatment ", by J. McKay and T. Schacher, (2009)
.- Your weight - Oxaliplatin dose is determined by patient body surface area (BSA) measured in meters squared, the formula for which requires your height and weight as input. Body Surface Area (BSA) Calculator. Be sure that they get your exact current weight, otherwise they may put the wrong dose of oxaliplatin in the syringe (i.e., don't get weighed with your pockets full of keys, cell-phone, wallet, etc, and be sure to take off your shoes and any heavy clothing). If you weigh in at a heavy weight, the dose they calculate for you may be too high, and it may amount to an overdose. A normal dose of Oxaliplatin (85mg/m2) is bad enough, and you certainly don't want to get an overdose. Also, make sure they re-weigh you properly for each new cycle of Oxaliplatin, since you may be losing weight from one week to the next, so your dose should be decreased each time according to amount of weight lost.
- Oxaliplatin side effects - Treating peripheral neuropathy by naturopathy -
Re: Oxyplatin advice (post)
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50311&p=385241#p385241
Prevention and Management of Chemotherapy-Induced-Peripheral Neuropathy in Survivors of Adult Cancers: ASCO Clinical Practice Guideline
http://jco.ascopubs.org/content/32/18/1941.full.pdf+html
Complementary Therapies for Chemo-Neuropathy: An Integrative Oncologist's Bag of Tricks
http://www.integrativeoncology-essentials.com/2013/06/complementary-therapies-for-chemo-neuropathy/
°- Note: Oxaliplatin toxicity and oxaliplatin desensitization protocols -
Oxaliplatin desensitization questions
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=35164#p246839
Allergic reaction to Oxi
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=43093#p304849
Desensitization protocol for oxaliplatin
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57906&p=456018#p456018
Hypersensitivity Reactions to Oxaliplatin and the Application of a Desensitization Protocol
http://theoncologist.alphamedpress.org/content/9/5/546.full.pdf+html
°- Oxaliplatin - Slower infusion rate. Normally, the Cycle 1 infusion is run at a slower rate (like 3 hours instead of the normal 2 hour infusion). This is so that they can better monitor the patient for reactions during the first infusion. From Cycle 2 onward, however, they will probably try to set up the infusion at the normal rate (like 2 hours to deliver the same amount of chemo that was delivered over a 3-hour span in the Cycle 1 infusion). This might be too fast for you. It would be less stressful on your system if they continued with the slower infusion rate from Cycle 2 onward. The down-side to this is that your infusion sessions would be an hour or more longer than standard if you choose to go with the slower setting. This is something that you could discuss with your oncologist.
.- Oxaliplatin -Lower overall dose of oxaliplatin - I think the standard dose for oxaliplatin is 85mg/m2, but the fall-back dose for patients who cannot tolerate this level is 75mg/m2. It might be better for you over the long haul if you were given the lower dose instead of the standard dose. With the lower dose you would have almost all of the benefits of oxaliplatin, but would have the added possible benefit that you may be able to tolerate oxaliplatin for the treatment period as opposed to having to drop it completely halfway through. This is also something you could discuss with your oncologist.
°- Note: 5-FU toxicity and DPD deficiency (Dihydropyrimidine dehydrogenase deficiency)
Several sources indicate DPD Deficiency affects from three to eight percent of the population.
Over 11 thousand new cancer patients can expect to have some degree of DPD deficiency. Unfortunately, this is not typically discovered until a cancer patient receives some form of 5-FU.
In its most severe from, the combination of the deficiency and 5-FU toxicity has a 33% mortality rate. Thirteen hundred people die annually from 5-FU toxicity. 1300 people...if those same people were dying in plane crashes, by crazed gunmen, etc, there would be a media outrage. Instead, these are people dying quietly in hospitals and their homes.
Genetic testing is readily available but not part of the standard of care. It may not be covered under insurance plans as part of treatment. The cost of testing is relatively inexpensive. If your treatment is going to include 5-FU based, DEMAND TO BE TESTED. Pass along this information and do everything you can to make testing a standard part of the use of this dangerous drug.
Reference: http://dpd-deficiency.com/
Dihydropyrimidine dehydrogenase deficiency (DPD deficiency)
ColonClub thread: 5-FU & Xeloda Extremely Allergic-
Caat55 wrote:Part of the chemo is some pretty intense meds to help with side effects, nausea. They make Friday and Saturday okay but by Sunday I am beat. The cold intolerance is mentioned by all and it is hard to overstate how strange and uncomfortable it really can be. I am tough, thought it would be a nuisance but it is more than that. I wear oven mits to cut veggies, but end of second week can use thinner garden gloves but even 18 days out it is uncomfortable to slice strawberries, imagine holding an ice cube in between your fingers, the tingling and burning, that’s what those yummy berries felt like.
I choose you knows about my treatment, most people would never guess as I have gone about my days as I always have, work, volunteering, social engagements, gardening and hiking. I find that my energy drops and I have to plan a bit, conserve my energy is I want to make it through a night event.
I love potatoes, a comfort food, and they help with the bowel stuff. I haven’t taken any meds for it as yet. I did try the nausea meds but maybe not soon enough as they didn’t really help.
My burned bum has been helped by CBD salve, I don’t know if its the high quality oils, shea butter, essential oils or the cannibaboids, but it has relieves the pain and finally healing .
Best of luck.
S
Deb m wrote:............... Prayer was they only thing that kept me sane through out the whole ordeal. It's just our cross in life that Our Lord wants us to carry. He will give you the strength to do so.
Praying for your well being along with everybody on the board.
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