Have a plan. What do I have to look forward to?

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4/26/2014 1:05am
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Looks like I have a treatment plan. I will be starting radiation on a my left axilla from my ribs to my neck. I will be doing 5 days a week for 4-5 weeks. I will be starting ipi about a week after the radiation starts. Although having a plan settles my nerves a bit it is causing me to stress about the treatments themselves.

What I am I looking at going through? I have seen/heard many things about both parts of the process. With radiation I have heard of everything from feeling tired to skin peeling off. With ipi I have heard of a little rash and fatigue to liver and intestinal problem. What experiences have any of you had with this? Were you able to work durring the treatments? How much time does the infusion take and how do you feel after it?

Honestly any information is helpful I just figured that was a good start.

 

Philippians 4:13 "I can do all things through Christ who strenghtens me"

Hi Mixta,

Are your doctors recommending both treatments at the same time?I am asking because only one of them is physically and psychologically demanding enough and with its own fair share of side effects to deal with.I was given the option to do radiation and Interferon at the time .I choose to do only radiation and retrospectively and it was the right decision for me.I would not do both treatments at the same time but then treatment decisions are personal decisions  and whatever you decide do to, is important that you feel comfortable with it.

Best wishes,

Teodora Chasse

I have had both radiation and ipi. If I could have had them at the same time I would have but at the time I did not know better. This is a link from one of our members talking about the benefits of ipi and radiation done at the same time. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-an...

My first radiation was 30 gray in  10 fractions to my spine. It was fairly easy. However they did not focus their beams as accurately as they could. For example I fould out later they can do a ct scan while they are getting ready for the zaps thus helping get the beams more accurately focused. This resulted in some radiation not going where it needed but basically just resulting in an upset stomach so I could not eat as well as I should have.

Second radiation was 30 gray in 5 fractions to my spine. It was done much better with the ct scan and all. I had no side affects at all other than feeling the tumor in the bone shrink. Yes I could feel it get smaller.

But all my radiation has been done to bone so that is all I know about it. Probably different to non bone.

Ipi was easy but I was declared a non responder. A little bit of rash off and on, some itching and a little bit of stomach rumbling a few times. I actually felt much stronger and energetic while on it. The actual infusion takes 90 minutes but there is all the overhead of them doing and checking your blood to make sure everything is ok so you can do the ipi plus the preparing of the ipi to your body weight that day.

 

I haven't had any treatments but it Sounds like a good plan to me.  I read somewhere that  Ipi may work in synergy with other treatments. IE both treatments may work better together than either one alone.  There is at least one person on this board who has done Ipi then IL 2 hoping for that synergistic effect and he had good luck with it.   Others with ipi experience will chime in to let you know their experiences. It's hard to say about side effects. Everyone experiences different side effects. But with ipi it sounds like the most frequent side effect is intestinal.  Others have said that any type of GI upset you may get with Ipi should have an MD notification right away as there are meds that can be given to counteract that side effect.  I do know one person who had radiation for breast cancer and it made her very nauseous and fatigued. She had no skin or hair loss.  But, as with meds, radiation does effect people differently.  Good luck and Best Wishes to you.

My husband had 3 ipi infusions at 10mg/kg which is a much higher dose that the FDA approved therapy.  He had virtually no side effects from it.  I think he had a little rash at one point but nothing bothersome.  Seems like rashes and colitis are the more common side effects from what I remember reading at the time.

Unfortunately he progressed on ipi and that treatment was stopped for radiation to his spine for LMD.  Only 5 treatments but again no problems.  He was told by the radiation onc that radiation is thought to boost the effect of ipi.  Maybe it did for him because he didn't have any more issues with LMD until Feb of this year (radiation was July 2013).

Hope all goes well for you!  

Hi. I had ipi followed by radiation last fall. Fatigue and gastrointestinal problems with both. But also on pain meds at the time which have the same side effects. For nausea I drank ginger ale and tea and sister in law recommended classic coke. I am not a soda drinker and never colas but this did help when ginger didn't. Has to be the real sugar kind. I did take nausea meds when those " natural" items didn't work. General eating was difficult as along with nausea and constipation was general lack of appetite and aversions to certain foods and textures. Sister in law kept me supplied with homemade soup. If people want to help with foods I suggest foregoing casseroles that are often offered and suggest soups. People like providing food and this might be less likely to go to waste. 

With fatigue ... Rest. Means probably a different sleep schedule but just go with it. Hard to do if you have to be to work on time and well rested so maybe you will need to take time off. As they say everyone responds and deals differently. I was in a lot of pain with a bleeding tumor so I wasn't working anyway, but would have had to stop from side effects of treatment.  I did work other years when treatment was surgery and during 3 clinical trials. 

My radiation was in pelvic area so GI problems that already were an issue continued. I was not prepared for the extent of skin irritation in terms of burning itching and peeling so you know everyone different but it can get ugly. Just a shock and annoying but salves /ointments easily treat it, just want you to be forewarned to eliminate that shock. 

Since radiation will be from ribs up, stomach / food issues might arise. My radiologist suggested Jamba Juice to get nutrients and stay hydrated. Making your own smoothies at home (or with someone's help) option too and this did help me greatly .  I tried ensure and of corse a fruit drink is much better tasting!  Soup, smoothies, oatmeal, rice and toast were about all I could eat. 

The actual infusion and time on radiation table are not difficult -like a routine dentist appointment.  You are there,they take care of you, you go home.  There are more people being treated with this combo with good results. Hoping you are the next success story. 

Wishing you well,

 

Maureen Elise

Hi MixtaJones,

Glad to hear you have a plan  I have had radiation, but it was to my breain (twice) so I doubt I can offer you any advice.  After my third ipi infusion I had realy bad headaches which turned out to be hypophysitis (swollen pituitary).  The pain was right behind my eyes and they both hurt.  I told my oncologist and steroids took care of the swelling.  There are several others on this board also had this side effect.  I did not have a rash but I did itch everywhere.

I understand the "freaking out a but" part of the diagnosis.  I discovered I was stage IV when my wife was 8 1/2 months pregnant (Sept 2011) and I was released from the hospital (lung surgery) five days before my daughter was born.  Mentally, it is tough dealing with diapers and cancer; but I have also found it helpful to have young children-they'll keep you happy and busy, and they'll never let you feel sorry for yourself.

Good luck, brother.  Keep us posted.

Brendan

 

Anonymous - (4/27/2014 - 9:49am)

Hi,

I had two four infusion treatments with Yetvoy/Ipi and on both occasions had radiation. The combination is an effect to really stimulate the cancer killing ability of the bodies natural immunological defenses. Google abscopal effect. Although everybody is different I found yervoy very manageable with just itching and some diarrea on both occasions but more intense on the second cycle. It's super important to communicate every change you see to your doctor so he can treat the side effects before they potentially worsen. I had a prescribed creme for the itching and over the counter Imodium along with an occasional prescribed steroid dose to control the stomach issue.  My radiation was just a one treatment SRS the first time but 5 sessions over 5 days the second.  That second radiation treatment definitely made me cumulatively more tired and I had a sunburn type feeling and look in my right temporal lobe scalp. I did lost that patch of hair in a month but it started re growing in 3 months. The distressing part was the plastic mesh strapped over my face immobilizing my head to the table. Could hardly breath, blink or swallow but I stayed calm and it was over after 20 minutes per treatment. Your radiation treatment sounds longer and more intense than mine. My sister in law has radiation for 5 days a week for three months. She was also very tired and her sunburn like symptoms were mere intense. Hers were three times longer than yours so I wouldn't expect you would see the same level of burn and skinpeel she had but would be somewhere in the middle of my and her side effects. You look pretty robust in your picture and I bet you handle this well. Just make sure you communicate every side effect, no matter how small to your doctor so they can address. Weird have somebody so curious about your bowels but get over that fast and save yourself some discomfort longer term. Good luck.