Inquiry re: Chemo histiories (pain, chemotherapy, treatment, blood)

[mvintar]

I'm doing my second (of four scheduled) chemos next week. I'm curious to know what other peoples' histories are with respect to their chemotherapy treatment. I tried to post a poll but it didn't turn out like I wanted it to; please use the questions to answer, rather than vote on them (sorry).

Here are my responses:

1. How many treatments or series of treatments, have you been scheduled and have you had?

Scheduled for four; second next week.

2. Did each treatment have the same effect or were they different?

N/A

3. What were some of the effects of your treatments?

Very weird and creaky feeling the night of the 2nd day afterwards and most of the next day. Not nauseous. Distracted myself with Diet 7up and ice cream. Alternating Ibuprofen and Tylenol helped.

4. In hindsight, what recommendations would you make to others?

Other people recommended (to me) that I stay ahead of any feeling of nausea by taking the meds, which I did. It was not nearly as bad as I thought it might be.

[Charley]

1. How many treatments or series of treatments, have you been scheduled and have you had?

Six cycles of CHOP-R intravenous chemotherapy (including rutaximab immunotherapy).
Four cycles of Intrathecal Methotrexate spinal cord chemotherapy.
18 radiation therapy treatments.
Hormone replacement therapy.

2. Did each treatment have the same effect or were they different?

The IV chemo was intended to kill any cancer in my body.
The intrathecal methotrexate was intended to kill any cancer that broke the "blood-brain" barrier.
The radiation was targeted specifically at the area where the tumor had been surgically removed.

3. What were some of the effects of your treatments?

The best effect was that there is now no evidence of disease. The other temporary effects during treatment included everything you can imagine, nausea, exhaustion, chills and sweats, not hungry and overly hungry, feeling too hold and feeling too cold, headache, body aches, chemo brain, steroid flush, hypersensitivity to poison ivy, insomnia, loss of all body hair, gain of sixty pounds and more.

4. In hindsight, what recommendations would you make to others?

The FREE e-book: Smashwords — The CHARLEY Approach to cancer — A book by Charles Silverman contains all of my recommendations, in detail. It's available at no cost and in a variety of formats. It's also available from Barnes and Noble, Sony Books, Apple I-tunes, etc. All sources are providing the book as a public service at no cost and can be read by most folks in about 30 minutes.

[SouthernBelleInUtah]

As a psychologist who has worked with chemo patients, I recommend not eating your favorite foods when you know you will be feeling the side effects, whatever they may be, not just nausea. Classical conditioning will make you associate those foods with the ill feelings; they won't be your favorite foods much longer.

[mvintar]

Originally Posted by SouthernBelleInUtah

As a psychologist who has worked with chemo patients, I recommend not eating your favorite foods when you know you will be feeling the side effects, whatever they may be, not just nausea. Classical conditioning will make you associate those foods with the ill feelings; they won't be your favorite foods much longer.

I wondered what your doctorate was in!

I really *wish* that that Pavlovian connection would occur (so I'd hate ice cream!), but unfortunately I'm having the opposite problem; I'm starting to worry about my weight. I lost 35 lbs. from the surgery and I was doing well (eating nutriciously and appropriately) but over the last four days I'm having trouble controlling my appletite and I'm very concerned about gaining weight.

Several posters in this forum have mentioned this problem. I typically use food to deal with emotions and kept my weight down, first by smoking for 18 years, and after that, by over-exercising. This problem is hitting me full force right now and it's scaring me.

[SD4020]

I had three rounds of chemo each three weeks long. The first week of each round was 5 treatments. Weeks two and three I had one treatment of bleomycin.

One of the side effects I have to always consider with bleomycin is oxygen toxicity and the development of pulmonary fibrosis.

As far as effects of chemo. The first week of each cycle was not fun. It was usually by thrusday or friday and throughout the weekend that I wore out. I didn't work those weekends. By Monday I was able to function, in time to drive the 180 miles for tuesday treatment. It was drive three hours, wait in the waiting room 15 minutes, 15 minutes iv fluids then 15 minutes of chemo. Lunch and head home. During this treatments I had major joint paint. Arm cramps, dizzy spells.

As a result of the surgeries I lost about 25 pounds which was good for me. Durning chemo I weighed in at 215 pounds. During chemo I maintained that weight within 5 pounds which was a goal.

[charolastra00]

1. How many treatments or series of treatments, have you been scheduled and have you had?

I was initially scheduled for 8 cycles, or 16 chemos (every other Friday). I only had 6 cycles or 12 treatments done because of organ (lungs, kidneys, and heart in particular) damage.

2. Did each treatment have the same effect or were they different?

Progressively worse in terms of fatigue, achyness, neuropathy, etc.

3. What were some of the effects of your treatments?

It felt a little like being enclosed by cotton balls - I felt like I couldn't move as quickly or with as much stamina, I couldn't think as well, and everything was hazy. My feet and hands were quite numb (I skinned my knees and sprained my ankles on several occasions). My scars were also quite dark due to the bleomycin (ie my cat scratched me and while it didn't even draw blood, the mark looks like a surgical scar now).

One of my drugs caused nerve pain. It started with serious pain in my jaw (what I can only imagine what dental surgery without novacaine would feel like). That only happened during cycle 2 and never again. During cycle 5, I developed a weird spot on my outer thigh that felt like shingles. It hurt so bad that I couldn't even wear a tshirt because the tshirt brushing against it would cause searing pain. Those were the only times where I missed work - so so so bad. I learned that I am very sensitive to nerve-altering agents because my onc never really experienced anything like it with other patients.

4. In hindsight, what recommendations would you make to others?
Don't eat your favorite foods while on chemo. A local cupcake truck brought me 2 dozen cupcakes to share with other people at chemo and nurses during cycle 2. I ate one and the thought of a cupcake has only just now stopped making me feel nauseous, over a year later. Oddly enough, cake was fine for me. I might never have salted caramel ANYTHING again though. Or ginger ale. Blech.

[chele123]

How many treatments or series of treatments, have you been scheduled and have you had?
I had 4 treatments of dose dense Adriamyicin/Cytoxin followed by 4 treatments of dose dense Taxol followed by 33 radiation treatments. I have since lost count. I had another 15 radiation treatments. I was on CMF it quit working, then on Halaven until it was clear it wasn't even trying to work, now I'm on Navelbine. I've been on Navelbine since November.

Did each treatment have the same affect or were they different? The A/C wasn't too bad, was able to work full time throughout treatment. The Taxol was tough on my joints. I don't know if they could have gotten me to do a fifth treatment. CMF, Halaven, and Navelbine been no big deal.

What were some of the affects of your treatments? Nothing lasting. Sore joints with Taxol. A risk of lengthing Q-wave on Halaven, but I wasn't on it long enough to worry about that. Insomnia with Navelbine, but that stopped after I stopped taking the steroids with my Navelbine.

In hindsight, what recommendations would you make to others? There are drugs to help you through all the chemo side effects. Use them if you need them. Do not try to tough it out, there is no reason to suffer.

[mvintar]

@chele: I'm taking Taxol, too. That explains why my joints hurt so bad, that one 24 hour period, about two days after my first chemo. Not looking forward to that again.

[theatergypsy]

I seem to be the only respondent who was on oral chemo, so my experience(s) differ.

Here are my responses:

1. How many treatments or series of treatments, have you been scheduled and have you had?

Six months of oral chemo, which was delivered to my door every two weeks by the USPS. I took Xeloda, 1,000mgs, twice a day for two weeks. Then off a week, and restart for a total of eight rounds.

2. Did each treatment have the same effect or were they different?

About the same for the whole six months.

3. What were some of the effects of your treatments?

I did experience some nausea but only two actual occasions of vomiting. I didn't have much of an appetite. I was fatigued, but that may have been a result of the surgery/anaesthesia/wound infection and not the actual chemo. Also experienced thinning of my hair.

4. In hindsight, what recommendations would you make to others?

Ask the medical staff about anything and everything. Fill every prescription you're given and at the first sign of ill effect, take it. Realize that this is a bump in the road. That the chemo is, for now, the only way to fend off the cancer. Try to keep an optimistic outlook and to maintain as nearly as possible, your day-to-day routine. Give in only when there's no other choice. And when the ill-feeling passes, get up and get at it!

The day I took my last chemo pill, I moved back to my own home. Ten days later, I auditioned for a play, got the role, and was back on stage the following month. I'm the Christmas Lady - the whole family - 23 of us - come to my house for Christmas Day. Food, cookies, presents, all by Yours Truly. I'm 76, and I still take care of myself, my house, and cut my grass every week in the Summer.

It ain't over 'til it's over!

[christina0001]

1. How many treatments or series of treatments, have you been scheduled and have you had?
I am to have six treatments (taxotere, carboplatin, and herceptin, AKA TCH). I am receiving #5 right now. When I'm done, the herceptin will continue into early next year, but that's not chemo.

2. Did each treatment have the same effect or were they different?
They were similar in many ways. I can predict my "bad days" almost to the hour.

3. What were some of the effects of your treatments?
Hair loss. Fatigue, weakness. Mild nausea, well controlled by meds. Stomach pain. Diarrhea. Loss of appetite for a few days (which then returns with a vengence - I have actually gained about 8 lbs). Terrible taste in my mouth for several days, which has gotten progressively worse with each treatment. Sore fingernail beds that have become discolored on a couple of nails. Hot flashes in the evening and overnight. Had weird skin redness and peeling after... I think it was treatments #2 and #3.

4. In hindsight, what recommendations would you make to others?
Take everything that you read and are told about side effects with a grain of salt. I think it's good to know what might happen, but realize that a lot of it won't happen or will not be as severe as it sounds. Also, rest and take it easy on your bad days so you don't make yourself feel worse than you have to.