Mikenh and Surgery

Mikenh

airborne72 said:

Chemo effects...

Mike:

Your situation is just as mine was.  The only difference is that I am stage II and you are stage III, so I was able to say with some level of confidence that I was not going to do any more chemo.  It was killing me.  YHowever, you are in a different position.

I am confident that you are both knowleable and strong, which will enable you to make a decision and withstand the effects.  I wish you luck.

Jim

Thans Jim. I may sound like I

Thans Jim. I may sound like I have my act together but things are often a crapshoot. Today was my first good day and it's 17 days after infusion. I really don't like only getting four good days for recovery.

I didn't have cold sensitivity today (50 degree temps helped) and was able to drink cold water today. The difference between today and two days ago is like night and day in terms of my mental health. My wife is heading to Singapore on Monday and will be gone for a month to deal with some real estate stuff so I'll have less help but we should be able to manage. I will get tests on Tuesday and then decide with the oncologist what to do. If there are test result issues, then I might get a chemo break. If not, then we could delay for two or three days. I would need two days advance to order the Xeloda and schedule the infusion.

My regular responsibilities are weighing on my workout time as well. I did an aerobics workout that I haven't done in some time and it felt nice to do it - I wasn't sure because of the bag. I want to get more walking, weights, etc. but I'm under a lot of time pressure.

Mikenh

WSJ:

WSJ:

​

Chemotherapy, a Trusty Weapon Against Cancer, Falls Out of Favor

Breast-cancer doctors are at odds over whether some patients should get less chemo-or none at all

By Lucette Lagnado Updated Jan. 29, 2018 6:02 p.m. ET

 

Chemo or no chemo? That is the question.

Doctors are at odds over whether some women with breast cancer should have chemotherapy—one treatment among the arsenal long seen as crucial to fighting the disease, along with surgery and radiation.

Many oncologists are shunning chemo as risky and ineffective at combating some early-stage breast tumors. Traditionally, the majority of women with invasive breast cancer were treated with some combination of surgery, radiation and chemotherapy.

A shift to less chemotherapy or none at all, called “de-escalation,” is being hailed by some as revolutionary, following what some doctors see as years of overtreatment with drugs that may have harmed more than helped. Proponents of de-escalation say chemotherapy—the use of chemical agents to treat the disease—should be used only when it appears likely to reduce the chances of the cancer spreading.

 

https://www.wsj.com/articles/chemotherapy-a-trusty-weapon-against-cancer-falls-out-of-favor-1517242200

(It's behind a paywall but an interesting article if you can get a hold of the whole thing).

Mikenh

Met with the oncologist and

Met with the oncologist and we're going to skip a week and resume next Wednesday. I could do it Monday or Tuesday physically and mentally speaking but I have obligations both days. We will do Oxaliplatin at 80% unless I change my mind during the week. My bloods are okay. Somethings are slightly better and some are slightly worse. The brown skin stuff is likely the Xeloda and not the Oxaliplatin. I didn't have them on the Neo-Adjuvant so it's likely the higher dosage.

I think that I have the Neuropathy now as the feeling is all the time. It's worst when I get up in the morning. And it's not related to cold sensitivity. If you see typos, that's the reason why.

BRHMichigan

Best to you, Mike!

Hope your adjustments help you through treatment. And thank you for sharing that article. My new doctor gave me a full physical/breast exam and I said that's all I need, to get breast cancer on top of all this. I remember seeing a story on CBS Sunday morning about a new trend in treating many cancers less aggressively. That sometimes very small tumors disappear on their own and don't require excessive chemo. It's an interesting, if risky approach. But aren't they all? 

Mikenh

I'm feeling quite a bit

I'm feeling quite a bit better. I didn't notice the arthritis and neuropathy when I woke up this morning so that appears to be gone and I think that the cold sensitivity is finally all gone. So we should be all set with the infusion next week.

I also ran 0.3 miles on the treadmill at speeds between 4.5 and 5.0 MPH. I haven't done this since the surgery so it felt great. I also wore shorts and a t-shirt. Lately I just walk with my regular clothes as I don't get enough of a workout to require shorts and the cold sensitivity made me want to be warm.

On a sour note, CEA is 2.2. It was 2.7 at diagnosis and the low point was 1.7. It was lower with the test at Brigham and Women's but I think that they use a diffent type of machine as the tolarances are different. Normal CEA from my local hospital is considered < 3.8 so I was actually normal even though I had a big tumor in me. I sent a note to my oncologist asking if it's a concern.

I'm somewhat buried at work.

airborne72

The Big Chill

I live in middle Tennessee and I have been cold since the 1st of November.  Just can't get warm.  So looking forward to spring!

Based upon your update, it sounds like you are ready to get your next infusion.  I wish you luck with it and with work.

Jim

Mikenh

airborne72 said:

The Big Chill

I live in middle Tennessee and I have been cold since the 1st of November.  Just can't get warm.  So looking forward to spring!

Based upon your update, it sounds like you are ready to get your next infusion.  I wish you luck with it and with work.

Jim

Hello Jim,

Hello Jim,

My wife is in Singapore right now and she said that it's hot and humid there. Singapore is one degree north of the equator so you can imagine how warm it is. It's 16 degrees outside where I am right now and I was using my Balaclave.

I think that your problem with cold is due to bodyweight and I do hope that you can get that fixed so that you can better enjoy life. The folks up here rely on a ton of clothes to keep warm as you can't stay inside forever. I asked the Oncologist's office to order the Xeloda so I'm hoping to get it by Tuesday.

michael

Mikenh

Feeling 100% today (well with

Feeling 100% today (well with the bag and all). I got six days out of the last bag and it took under 10 minutes to change. So enjoying the good feelings until I'm back in jail on Wednesday. And then it will be back to boiled water, warm drinks and no fruits.

Mikenh

Infusion early tomorrow

Infusion early tomorrow morning so back in jail. I've been tired lately though still getting over 8 hours of sleep. I think that it's the time spent working and writing a 32-page paper. We're expecting 5-8 inches of snow tomorrow afternoon.

Mikenh

I'm glad I did the 20%

I'm glad I did the 20% reduction. I had the infusion and felt symptoms with 30 minutes to go. Cold sensitivity in my hands, and face and throat closing. I think that the infusion center room was colder than usual as someone else complained that she was cold. I had a ton of clothes on so only exposed areas were affacted. It was painful cleaning the snow off the car and driving home as the steering wheel was cold. The snow as unplowed and very slippery so I had to take it slow.

I got home and turned the heat up and feel better though my typing is somewhat impaired.

The other problem is that I spent 3 hours on Monday trying to get the medication and they sent me 1/8th of the pills. I called last night to get it fixed and they said that they would fix it. They want to send out the full order but I already have 1/8th of it and I'd guess that they'd bill my insurance for the extra pills which I would just throw out. So I've been on the phone for about an hour waiting for them to fix the problem. It's taken me typically 3-5 hours on the phone for every order with these folks.

Mikenh

Labs came back. CEA stable at

Labs came back. CEA stable at 2.2. RBC and WBC and some other things improved - consistent with taking a week off chemo. 20 minutes clearing snow off the cars this morning - not fun after an infusion day. There was a lot of ice on the driveway. Only 3 inches on the roof and warm temps this weekend so I won't need to clear it for this storm.

Mikenh

Someone on another board

Someone on another board recommended Hypafix tape for running with to provide extra security. I ordered a roll on Amazon and I tried it out this morning. It was not what I expected. It is very close to or the same as the wafer tape. So I put a three-inch strip on the top of the wafer and on my skin. Price was reasonable at about $10 for 5 cm x 10 m and the 5 cm width is perfect for 1/2 on skin and 1/2 on wafer tape. I will use it on three sides on the next bag change. It's nice to have a bit more security when trying to be active.

Some of the tapes that hospitals use are eye-popping in cost. Amazon is looking at getting into medical supplies and that might be something revolutionary.

Mikenh

I got into the office at 7:00

I got into the office at 7:00 AM which hasn't happened in a long time. Have been getting in around 9:30 AM to 10:00 AM because I felt so crappy - and I'd work until 5-7 pm and then work at home in the evening. So I'm feeling moderately better. Not 100%. Probably won't see 100% until the weekend at the earliest. But I'm on schedule for my big work project and I'm happy about that. I am considering taking infusion day and the day after off in the future. Or some combination of that. We have "unlimited vacation time" at the office as the new policy but I have to figure out what that really means. My manager keeps track on a 4 weeks/year schedule and I need to find out what I have in the bank.

Also got in a fast 1/2 mile walk at 4.5 MPH. The guy on the treadmill next to me was running at that speed. 4.5 MPH is a quick walk for me but I suspect that I could walk at 5.0 MPH and perhaps 6.0 MPH with some racewalking training. Anyways, overall feeling better today.

Mikenh

I looked through the

I looked through the obituaries in the paper on the office kitchen table and was noticing that cancer takes a lot of people.

Trubrit

Mikenh said:

I looked through the

I looked through the obituaries in the paper on the office kitchen table and was noticing that cancer takes a lot of people.

Don't make a habit of doing that

it can become very addictive. 

I would read the Wiki Obits every day, trying to keep up on names from my years in England. In the end, I had to quit, because so many died of Cancer that it became quite scary to me when I was doing treatment. 

tru

plsletitrain

Obituaries

I remember last year when I was just about to start chemo I kept reading headlines of famous people being taken by cancer.  And news of ordinary people, some acquaintances, being taken by cancer.  I just wanted to scream silently it was very hard for me.  I remember saying to myself everytime I read of a headline that reads "This person died", I say to myself, "I bet its cancer".  I just cried.  Now, I'm more accepting and open to the idea that the cancer might kill me, it might not.  There are still times that the thought of cancer winning hovers in my head and I just think of some other thoughts and say blah! I've been too tired worrying of death already.

abita

Hearing y'all talk about

Hearing y'all talk about obituaries is very depressing and not helpful in staying positive so can face treatment with hope. 

plsletitrain

Abita, I'm sorry if our

Abita, I'm sorry if our discussion on obituaries made you depressed in any way.  I guess cancer is really that elephant in the room, we don't want to talk about it, but it is there.  I was, and still, dread the thought of cancer winning but sometimes we need to face reality and come to terms with it.  It is a known fact that cancer has taken lives and it can, and has the capability of takoing our life.  But it doesn't mean it will.  That's why we do what we do to increase our chance of survival.  Some people have gone and cancer took them.  Doesn't mean same thing will happen to us.  Don't let bad thoughts get into you, instead, focus on the most important thing now: which is to eradicate those cancer cells.  

Mikenh

I changed the bag on

I changed the bag on Wednesday after four days. The high watery output resulted in stinging starting on Tuesday and I used the flat Convatec wafer instead of the Convex wafer. I wanted to alternate to use up some of the old supply. That was a mistake. Once the stinging starts, it lasts for a couple of days. I used the Convex wafer for the replacement and I did the crusting thing (powder + Cavillon + powder + Cavilon) and the stinging went away after a day and a half. I really should just stick to the Convex wafers as they work so much better for me. I have 15 of the old ones though - I'll look to give them away as one of my other websites has a mechanism for doing that. A new order of Convex wafers arrived today and I'm going to pick them up this afternoon. I think that I need to change more frequently the week after infusion as the output is different. It firmed up today with a banana last night, some potatoes, and several slices of whole wheat bread.

abita

plsletitrain said:

Abita, I'm sorry if our

Abita, I'm sorry if our discussion on obituaries made you depressed in any way.  I guess cancer is really that elephant in the room, we don't want to talk about it, but it is there.  I was, and still, dread the thought of cancer winning but sometimes we need to face reality and come to terms with it.  It is a known fact that cancer has taken lives and it can, and has the capability of takoing our life.  But it doesn't mean it will.  That's why we do what we do to increase our chance of survival.  Some people have gone and cancer took them.  Doesn't mean same thing will happen to us.  Don't let bad thoughts get into you, instead, focus on the most important thing now: which is to eradicate those cancer cells.  

Yeah, I have those thoughts.

Yeah, I have those thoughts. I also have discovered, after my diagnosis, that I have friends, more than I would have thought, who had cancer and are surviving. I guess I never knew how prevalent it is. I know this is now something that I will always worry about. I have always been sensitive, but I have found that any death now gets to me even more. I cry at any of it now.