That first chemo session: Things I know now that I wish I knew then

The doctors are prescribing the gold standard, the protocol that works best to fight your cancer. That means it's pretty darn strong stuff. You want the most effective treatment you can tolerate, yes? So you start with the toughest treatment , which may be very unpleasant, and may be more than you can tolerate. Then you work with your doctor to make adjustments to get to what you can tolerate.
(1) Fluids are so important. Even though I was drinking 8 glasses of something (water, gatorade, juice, etc.) every day, it wasn't enough and my dehydration contributed to my pitiful mental state by Day 3. Next round, I'm getting intravenous fluids every day and on the two days following.
(2) Sleep deprivation. Another contributor to my pitiful mental state. Next round I'll make sure I have something from the doctor to help with sleep. Apparently the steroids threw me back into the land of night sweats, because I was up every two hours, soaking wet, had to change clothes, change bedding (once I ran out of other places to sleep in the house).
(3) Pain. My lungs were still quite sore from pneumonia when I started the chemo, and chemo seemed to make it worse. The initial drug prescribed, even though I used it exactly as prescribed, made me a bit out of my head - quite goofy and forgetful and depressed. Had I checked with my doctor, I could have used the heavy-duty one during the night only and a gentler, kinder option for daytime to minimize this problem. As it was, drug further contributed to my poor mental state.
(3) Laxatives. Wished I'd taken them from Day 1. A week of toxic back-up is not a good thing for mind or body - nuff said. :)
(4) That after-chemo shot to raise your white cell count. For me, that was far too painful, both the injection and the aftereffects.
(5) Perspective. I felt so awful after 3 days of chemo that I just felt that I could not go on if this is what life was to be. I forgot: This too shall pass. The misery eases, in just a matter of days, actually. And remember what I said at the beginning about starting with the toughest protocol? Well, now it's time to go back to the onc for adjustments to get to the toughest protocol I can manage. For me, it's a switch in the chemo cocktail, the addition of intravenous fluids already mentioned, more careful pain management, elimination of that after-chemo shot, help for sleep, and of course, the dang laxative.

So easy to see in retrospect, impossible to see at the time. I had a lot of the information, I just couldn't process it. So another change I've implemented is better and more frequent communication with the onc during and after chemo. I did call during Round 1, but messages were funneled through office staff and lost something in translation. My onc was happy to work with me to set up a more direct system to resolve problems as they occurred this time. So now I have no hesitation about the next round of chemo, to start December 7 after the spot radiation for the lesion on my brain this week. I'm not saying I expect it to be a walk in the park, but this time I'll remember that it's a temporary state to feel so bad and that I can and should ask for help.

Hope this helps someone - it helped me to get it out of my head by writing it down, so I can look back and remind myself, "It will be all right, give it just a little time. Things will change."

Today had the "thin-slice" MRI to get ready for the NovalisTX radiation procedure, and got fitted for the mask. Plus got the news that my white cell count is back up, so I can live and eat like a normal person again. Appetite is coming back, as is my energy level. Also, my hair is starting the falling-out process - don't tug too hard!

Edited November 23, 2010 at 9:57 pm

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10 replies. Join the discussion

Crystal,
What a good idea you had, well done! This will be very useful for newbies just starting out on chemotherapy. There is so much information to process in a short space of time, the early days following diagnosis can cause system overload.
Now, they can read your post, with its handy hints and reassurances, and be better prepared for the chemotherapy.
This is also a useful reminder for members on 2nd or 3rd line chemo. It may have been a while since the first chemo.
I hope you are well, and thanks again for your post.
With love and best wishes Carolyn

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If what it has is the capacity to achieve total destruction of the tumor cells directly, then sufficient drug should be given to achieve this goal. If the drug does not have the capacity to destroy the tumor cell, and the drug works through an effect on angiogenesis, then the drug should be given at a dose consistent with this aim.

There appears to be a number of patients who have had long-term survival after high dose therapy, but there are a number of patients whose tumors are responsive to chemotherapy who have had long-term remissions from low dose therapy, as well as a number who show no difference in survival when treated with low-dose or high-dose therapy.

You may want to reserve aggressive therapy for those patients who will derive more benefit than harm, while identifying the most promising treatment regimens for everyone. In patients with tumors very resistant to cytotoxic chemotherapy, the most promising treatments may be angiogenesis inhibitors, growth factor inhibitors, or more integrative medicine approaches.

It may be better not to give more aggressive and toxic, mutagenic and immunosuppressive combinations, but to give "targeted" single agents, or give least toxic mutagenic synergistic combinations. Although something may be an above-average regimen in some patients, it may not be a highly active regimen in others.

More emphasis should be put on matching treatment to the patient, through the use of individualized pre-testing, having more respect for minimal partial response or stable disease, when it can be achieved through use of the least toxic and mutagenic drug regimens, and reserve the use of higher dose therapy or aggressive combination chemotherapy to those patients with tumor biologies most amenable to attack and destroy by these treatments.

I keep holding out hope that clinical level oncology will eventually shift from gatekeeper to integrative medicine, and with that shift will come a more imaginative approach to therapy models and treatment plans

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Good job, Crystal! This will be great for everyone approaching treatment.

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Hi Crystal,
Thank you for taking the time to write all of this information. Some Oncologist's offices will give patients some papers to read so they know what to expect, however, it's been my experience and some others as well that not many offices are so generous. I am certain your experience and writings will be very much appreciated.
Blessings ♥

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Dear Crystal:

This is great information that is bound to be very helpful to people undergoing chemo.

Thanks for being so thorough and so very thoughtful.

Blessings!
Brooklynda

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Crystal,

I went throughout total he'll last cycle. So far this cycle was has helped is:

Claritin 24 hr the day before and seven days after the neulasta shot

L -glutamine 1 tablespoon dissolved in water swishes around a swallowed for thrush

American ginseng for fatigue along with whatever movement you can manage

I followed the life over cancer protocol for supplements and vitamins after my integrative oncologist gave it the go

Senokot is a must.

Sleep to keep the white blood cells up.


I am on daY four following infusion and I will let you know how it works. So far no bone pain. Last time I was on morphine!


Thanks for posting. The more reality out there the better.

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Hi Crystal,
Thanks for sharing what you have been through. I'm thinking of you often and keep you in my prayers. Sue

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Having been the caregiver for three rounds i can identify with your enthusiasm to gather knowlege into a camper's checklist. Hydration you are right, is the most crucial. But its hard to get hydrated if you cant swallow a drop without yakking, so Please add the following to your protocol, you will thank me:

Ginger: Fresh ginger, ginger tea, or ginger pills. Take them at least twice a day starting 3 days before chemo and continuing to 3 days afterwards.

Ginger. Again. I am very serious about the ginger. A placebo-controlled, double blind study (that is neither the patients nor the doctors knew who had the active ingredient and who had the placebo), of 644 cancer patients proved substantial quality of life difference and i've seen it with my own eyes. more effective than anything.


But also take your antinausea meds as directed and before the nausea can hit you, take the first one first thing before your eyes even open.

Cannabis aka marijuana, if you can get it. Improves appetite and diminishes motion sickness.

Acupressure- use Sea Band or Psi wrist bands, they are proven effective for chemo nausea. Placement is important: three finger widths up from palmar crease.

Aim for a zero sugar diet between treatments and no meat the day before chemo.

Slippery elm bark which is sold in lozenge form, can also really help to protect your irritated stomach and prevent the spasming that makes you retch.

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You have pretty much said it all but I would like to add, I took 5 steroid tablets at 9 the night before chemo and 5 at 3:00 A.M. the morning of chemo. I stayed awake for 32 hours, there was no sleep within me, so tired but my brain would not shut down and I had not slept since I got up the morning of chemo until after I went for my neulasta shot the next day and then only for 2 hours. The shot to me was not pain in itself but the pain throughout my body was horrible from the neulasta. Came to the conclusion it was the steroids that kept me awake, they cut those down for the next treatments and it was much better as far as sleeping. Love and prayers Mitziger

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Thank you, great post. I wish I had read it before my husband's first chemotherapy 2 weeks ago. I have found everyone s comments helpful. This is a very stressful process and heart wrenching to see the ones you love suffering.
It's so important to share all of this valuable information. Thank all of you for taking the time with those of us that are new.

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