Post chemo update

Kathryn_in_MN

I've been away form the boards for a while, other than one quick check one day while we were gone. I really needed a break from all things "cancer." My husband and I went to our second home in Mexico, and it was just what I needed. My days weren't focused on medical appointments and cancer. They were focused on enjoying the ocean, sun and warmth, along with resting and visiting with good friends. A wonderful place filled with energy to start me on my journey returning to health.

While we were there, we celebrated my husband's birthday and my end of chemo. We did it together - a Celebration of Life party. It was a fantastic day with lots of good food and good friends celebrating with us.

At first my energy started to come back, but then I had a set-back and am still struggling with fatigue. I am not nauseated anymore. Food is starting to taste pretty close to normal. My GI tract is healing. I still have a couple sore spots on my tongue, but the mouth sores are a lot better. Unfortunately the neuropathy is worse. It seemed to get a little better for a few days, and then got worse and worse. Now it has leveled off, but hasn't started to get better. Overall, this is a heck of a lot better than I felt during chemo, so I hate to complain about the lingering issues.

I have had a few very strange things happen. That isn't surprising to anyone. I'm always the oddball. I have not been able to figure out my current problem. I assume it is related to chemo, but then again maybe I shouldn't make assumptions. I haven't heard of this from anyone else, but maybe I've just missed it?

When I was on my walks, my fingers would swell a lot - to the point of being painful. My feet also did some swelling. (I do have a lot of neuropathy in both, but this didn't seem tied to neuropathy.) Each day I walked farther and faster for several days, feeling stronger each day.

Then I woke up one morning with my joints of my fingers VERY swollen, and my hands hurt very badly. And the fatigue was overwhelming. I could not go for my walks. It was all I could do to get out of bed. The swelling went down a lot, but the backsides of my fingers had big read blotches on them, and those hurt. The next day - same thing, but I also started to get little blisters in those red areas. If I so much as bumped anything against the backside of my hands the pain was awful. My middle fingers on both hands were affected very much, with the fingers on each side of them affected, but not as badly. Nothing on my little fingers, and only a little on my thumbs.

Then I got a big red blotch on the inside of one wrist, and a strange red blotch that looks like a large smiley face on the inside of that same arm. A few days later the wrist blotch developed the blisters too. My fingers went from hurting to itching. Most of the blisters on my fingers are gone - replaced with tough scaley skin. But I do have two new blisters, and one really hurts again. Off and on they all itch. The blisters on my wrist have gone down, but the spot still looks bad. The "smiley face" on my arm is still there and does not hurt or itch and has not gotten any blisters.

Now along with this, I haven't had all the joint swelling anymore, but every joint in my body aches very badly. I get up like an old lady. In many ways when I first try to stand up, I move like my mother who has fibromyalsia. Evertying is so stiff and sore it is hard to get things moving. If I sit for more than 15 minutes everything stiffens up. I can't keep moving all the time because I am so fatigued. Otherwise I would - just to keep this stiffness and pain away.

I stopped all supplements, and stopped my omeprazole. But I have had to continue my Coumadin. It is the only chemical I've been putting in my body. I did put Cortazone cream on my fingers when they started itching so badly. It did seem to help. But other than that I've done nothing for this.

Has anyone else experienced this? Any clue as to what it is? Some odd auto-immune response? A weird after effect of chemo? A reaction to the sun due to built up chemicals in my body? I've been just waiting for it to go away, but it has been over a week now. I'm so tired of doctors and medical facilities that I hate to go see anyone if I don't need to. But if this is something that could escalate, I'll kick myself if I don't go in. I did get full blood panels Wednesday.

I just got off the phone with my oncologist's nurse. My CEA is 2.1!!!! That drops my scanxiety level a lot! I have my PET/CT next Wednesday and my onc appt on Friday. My red count is low and my creatin is low, but everything else looks great! HOORAY!!!

I'm waiting for another call back after she talks to my doctor, to see if he thinks I need to be seen for my wierd skin and joint issues.

Kathleen808

Kathryn
Kathryn,
So glad that you were able to enjoy the water, beauty and sunshine in Mexico. How lovely that you had a Celebration of Life! Way to celebrate coming off chemo.
It is good that your doc is on board with the joint and skin issues. When I hear about joint problems, I think auto immune as well. I'm sure your doc will figure it out. The weather in MN should be warming up and blooming into a beautiful summer. I hope it is a great one for you.

Aloha,
Kathleen

AnneCan

Kathryn,
I think it is
Kathryn,

I think it is wonderful you were able to have such a lovely break. I am also glad to hear such good CEA results. Sorry i don't have any answers regarding the pain; I hope someone else can help you.

Sundanceh

Hi KnM
I saw you on Pat's CaringBridge site a week or so ago - you were on your island.

Sounds like a wonderful time - I think we need a getaway too - one day we're going to get one.

I don't know what to make of your description. Perhaps it is sun related and coincides with your chemo, that stuff does not go away right away.

I have a hard time moving too when sitting, but I did alot of radiation and the surgeries they did on me, busted up my right side pretty good: nerves, muscle, fat. I feel like I get out of bed or up off a couch much older than my age.

I guess we'll see what your doc says.

Good to see you.
-Craig

C Dixon

Hi Kathryn
I also had pain after I finished with 12 rounds of Folfox. My onc was clueless but I found a lot of people online who experienced this after breast cancer chemo and have talked to several colon cancer patients who have this also. I did have mild neuropathy but never any pain, just tingling. The pain after chemo showed up for me about 3 - 5 weeks after I finished and it was in the upper body. I also remember my legs hurting if I sat for a long time. On the message boards, people were talking about chemo induced arthritis and I just did not want to deal with that! I did get pretty scared because I just wanted my life back.

The only thing I found to help me was to exercise to the point of getting sweaty - it was summer in Columbia, SC at the time so that was not hard - and the internal heat loosened me up and gave temporary relief that lasted longer and longer each day. It was finally gone after about two months.

I just finished 12 rounds of Folfiri and am getting the sore legs again. I am sore from exercise (not taking much to make me sore, sadly) and I too feel like Granny when I get up to walk. It loosens up after a few minutes but ooh, it hurts at the beginning.

I also do yoga and when I hurt I just do gentle yoga.

I think you may be wanting to get back to normal too quickly. I'm the same way. It is just going to take time. Slow your walks down and be patient with your body. It has been through a lot. I am preaching to myself also. I'm so sore today!

I don't know if skin is super sensitive to the sun on this chemo but I did get sunburned right after my last Folfox round and it hurt down to my bones. It was awful.

How about a massage?

Catherine

Annabelle41415

You Poor Thing
Oh my goodness girl you have been through the wringer. Hoping that they can figure out what is going on. Wondering if being in the sun has something to do with it. I was told to stay out of the sun for quite a while. Hope you feel better soon.

Kim

chicoturner

stifness and pain
Hi Kathryn, I loved hearing about your wonderful time in Mexico! Good for you! About the swelling and red splotches - I don't know, but I too have the achy stiffness. When I get up I feel like I am 200 years old! I have mentioned this to my onc here in chico and to the onc at UCSF. The only answer I have heard is "once you have had chemo........" so I have quit asking. When I hear the commercials for Fiber Myalga (spelling@#!) I am sure I have that too! I have just begun taking Glucosamine Sulfate. I have only taken it for about a week so really don't know if it will help, but am willing to try. I am not on chemo right now, taking a break, so felt it was a safe time to try a supplement. I did make a mistake the other night and took it before bed, then within about 1/2 hour I took Tylonenol PM and within about 3-4 hours was throwing-up and sitting on the toilet. That lasted about 4 hours.
I talked with the pharm. at the drug store and she said it was most likely a drug interaction. Both can cause stomach problems especially on an empty stomach. So.... don't do that!If you talk with your onc and hear something different then I did or find something that helps you feel better, please share the info. I am a preschool teacher and am up and down all day. I am sure that being busy and with that discomfort it makes you very tired.
Hope you feel better soon. Jean