August 2015 Chemo Group
Comments
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Here's a serious question for y'all ... am I crazy to camp next weekend? I'm going to a workshop and the only free accommodations are on a campsite. I think I'll be surrounded by fellow workshoppers (writers don'tcha know) so it's not like I'm going to be all alone, but I'm starting to feel squeamish, with all these warnings about staying away from crowds & unsanitary conditions. And this not-getting-sick stuff is no joke - I've now heard of two women who were recovering during BC treatment and died of infections. I think they'd just had major surgery, which is not the case for me, but still. It gives me pause. (Then again the first thing I did after my very first infusion was camp for two days! But I had my hubby with me. This time he can't come along.)
Bunnybumps, your doctor sounds like he has some interesting bedside manner ideas! Sheesh. But he's also making changes to your treatment to make things better for you, so that's good.
The hair is falling out ... But I think I won't be shaving it. As much as I wanted to rock a bald pate for my son's ideal Halloween costume, I suspect I'm not going to lose all my hair and I'd rather not go through the stubble phase if I don't have to.
I got confirmation today that my insurance company will definitely pay for my Chemo Diva wig and they even gave me the form to fill out for the claim. By the time I get this silly thing, I'll probably be so used to having short hair that I might not even wear it! But it will be nice to have as a backup anyway, in case I get really patchy.
Just wishing everyone an easier time this week ...
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Travel, camping - not for me.
1 day at work yesterday = me in bed today with headache and nausea.
We pay the price.
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Mom2ABoy, yes my doctor has a wicked, dry sense of humor, but so do I (plus sarcasm) so we get along ;-). I think he was serious, not that I was at death's door, but that my system is so unbelievably sensitive and, not being able to metabolize the Adriamycin (up to 48 hours this time - very bad), my body was getting quickly broken down to almost beyond manageable levels. Had they continued with it I could have deteriorated completely. I was in the ER last Thursday with what appeared to be the very blushy beginning of cellulitis at the base of my neck. Luckily the antibiotics brought the swelling down almost immediately, but had that bloomed I would be in the deep doodoo today. I don't mind when he says things like that. Scary as they are, they're honest, and I may be a bunny, but I'm a tough bunny! (Usually...)
And I love your picture! That's me in a nutshell this week, except bald!
I don't think you're crazy to camp, as long as you're feeling okay. Just take some extra precautions re: hygiene/sanitation and make sure you'll be warm enough. I don't think it would be quite the same as traveling on a plane or train, just as long as you'll be able to stay clean, dry, and warm.
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Bunnybumps - I am sorry you are having such a rough time. We have a very similar diagnosis (I had 3/12 nodes). My chemo treatment is cytoxen and taxotere 4x - 3 weeks apart. I hope you have an easier go with it next round.
Feel better Ms Brompton.
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Bunnybumps - Sorry you had such a rough time on your former chemo regiment. I'm on TC, and it hasn't been that bad. I get skin-related SE in the form of bumps (looks like acne here and there), but manageable. I hope it will be more manageable for you.
Mom2boy - I've camped twice at the beach during, and my doc said it was fine. (Wear shoes, be mindful of germs, take a thermometer in case u need to check temp in middle of night). My doc wants me to live life as normally as possible.
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I am certainly feeling well enough to camp...and fairly sure my doc, who also said to live life as normally as possible, would approve. However, camping around here doesn't appeal right now: too dry, too many fires. MO has already ok'd a trip to the east coast the week after tx number two. BTW< the women who got infections post surgery, may well have gotten the infections in the hospital.
I'd think being around other writers would be good for the soul.
Octogirl
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I am a week out of my second round with a lowered dose, and started feeling human again yesterday. The nuepogen daily shots seem to be helping. I met with palliative care yesterday to address my constipation issues. They have a "pooping protocol" that they put me on and I am hopeful that that horrible side effect can be managed. For those of you that are having a really hard time with side effects, find out if palliative care is offered for you. It is not just for end of life, it was designed for people with a disease that need help with side effects or emotional support. Now that I am in the system, they will always be there for me if I need help. It's another big support layer. They also offer free emotional support to your caregiver. Lord knows they need it too.
Musogirl, I really encourage you to get some mental health support. I've had thoughts of "is this worth it". We are in a fragile state, physically and emotionally. I'm seeing a therapist, but there are many free support networks out there. Know that you are not alone, and there are people that can help, but you have to ask for it.
As for traveling, I was in the hospital for four days due to nuetropenic fever, so I don't advocate it, at least during your nadir. People do die from infections. If you do travel, make sure you ALWAYS know where the nearest emergency room is. Then again, if you're feeling better than I have, why not live your life? ah, it s a personal decision.
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molliefish, thank you! I live in Michigan, so I'm hoping that I can find the Schmohz!
Re: camping . . . As long as you can get to an ER if you need one, I say go for it.
I second what others have said about sanitation/travel--just be safe.
I'm off to teach in a steroid-induced haze.
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Ravensally, I am under the care of my PP, a trauma therapist, and a nutritionist for my PTSD. All my docs know what's going on. The big problem I see is if I say I am having suidical thoughts they usually want me to see a psychiatrist BUT the chemo meds are the direct cause of my suffering/flashbacks/bad thoughts--so there is nothing a psychiatrist can do. I need to talk to my MO and see what can change.
Which leads me to my next question. What is the Carboplatin for? I know the Herceptin is given with the Taxotere for efficacy, but if we get the Taxane, do we need the carbo too? I am seriously doubting my ability to do another round.
So, I have been reading about SSRI's and how Paxil interferes with Tamoxifen. Paxil is my little buddy and I have had bad experiences on other meds. Not sure how we will address that either. I need my sanity!0 -
Musosgirl, my onc says that Carboplatin and Taxotere play well together, because they work slightly differently on cancer cells. So, think of it like this: those are the two big guns/the big blasts (that thankfully are short-term), whereas the Herceptin and/or Perjeta continue their assault on any stray cancer cells over time.
I'm so sorry that you're having a hard time with the PTSD. My partner has PTSD, so I'm familiar with how it works, and it's no fun at all. Add to that the trauma of cancer diagnosis and treatment, and it sounds pretty miserable. I do hope that you find a med that works--have you ever tried Effexor? It seems to be the go-do drug for folks on Tamoxifen or AI inhibitors.
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I was on Effexor for a short while during my original trauma, but since I was pregnant I did not stay on it for long. I spent a few days on a psych ward after one med left me in BAD shape, and the psychiatrist there was amazing! He pegged me down so fast and got me stable and my PP has not been willing to change my cocktail in 3 years, it has been so good. (because he is a hospital doc I can't see him again unless I want to admit myself--and my last psychiatrist was the one who put me on the bad med). Anyway, he said I need to be on an SSRI for my specific blend of anxiety issues--OCD and trauma--and Effexor is an SNRI.0
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Sloan15 No duckling, but Linus here! I never shaved, & so far I still got my eyebrows (was told the hair there might fall off, too). Still have some hair for around my ears when I wear hats & skull caps. Will ask MO if hair continue to fall for a while after last treatment.
DeeRatz I'm super tired physically after round 3 TC (today is day 17), have to catch my breath & rest after walking across parking lot ... good thing I use my brain at work... as long as I don't move too much, I feel ok.
But the time has been dragging this past 10 days or so... I can't wait to get the last session over with! (next Monday!!) My MO said my immune should recovered before flu season begins, but a few people at work are already coughing up the storm...
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bunnybump
What are anti nausea narcotic cocktails and yummy anti nausea niblets.
I am so paranoid of nausea and vomiting when I start my chemo next week.
Thanks for your help Rosieo
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Superius:Thanks for letting me know how you are feeling. I had an appt with my PS today. It was my last expander fill....Yay! She had BC a year ago. I asked her for her opinion if I should embark on a trip and concert. She told me that as long as I am feeling good to go ahead. I trust her opinion as she has been a great source of info and advice for me. So I guess I will see how I feel and if I have to back out last minute I will. I am at day 14 of cycle 2 right now and I am feeling great.....I do get fatigued now and I have learnt to pace myself.
On a side note, I just found out my friend who had a bilateral Mx six weeks ago will also be joining a chemo club. I was hoping she would not have to go thru all of this fun we are all having. Good thing is I am a few steps ahead of her. I will be done my treatments and can help carry her thru her treatments. Fricken cancer.....0 -
Rosieo, they're so very good at managing nausea these days that it's almost a non-issue for many. My NP put it this way: twenty years ago, their idea of managing SEs was a barf bucket. These days, we can be armed with anywhere between one and six anti-nausea meds. The trick is to stay ahead of it. Take it exactly as directed, for the number of days suggested to you. For example, I get Zofran with my pre-meds, and then I take it every eight hours for the first three days after treatment. They also gave me compazine for "breakthrough nausea" (which I can take with the Zofran if I need to), and Ativan for steroid-induced anxiety (it doubles as an anti-nausea and is great at night for three or so days). If I need to, I can take all three.
I guess what I'm trying to say is this: don't worry too much about side effects you may never have, and stay proactive. Stay hydrated. Take your meds. And feel free to ask any questions you have to our group; we're a pretty cool bunch.
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Rosieo, they really are amazing at treating nausea and vomitting. I know my posts sound harrowing but my MAIN PTSD trigger is nausea and that has not been a problem. The pre-meds they give me plus a few zofran/compazine here or there and I am good. Like Kate said--be PROactive and take the meds as directed--don't "wait and see."0
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Rosieo, KateB79 is right, and you should definitely follow her advice. Those names are my playful way of talking about the large amounts of narcotics my VERY complicated body needs to get though the chemo, something about 99% of patients DON'T need. I very much predict and hope that, as my doctor says, you will "Be normal, don't be special." I have a lot of medical problems that started before I got cancer and have caused problems with my treatments. I'm "special" and it's not what you want to be when it comes to chemo. Some of the stories you may come across, like mine, can be frightening, but rest assured, we are not typical of the chemo experience.
Fortunately the majority of patients don't have the side effects I've gotten. The reason I have so many medications for before, during and after is that I didn't metabolize the Adriamycin, even at a lower dose, so I was hit particularly hard. This is extremely rare. I have a side effects specialist that consults on my case and he was called in to make sure I could get through the rounds, especially now we're changing my drugs. Like Musogirl, I developed PTSD from the chemo, but the specialist is helping me manage it and I keep going back for my appointments and treatments. I don't like it, but I have to do it if I want to get well.
As I was told, it is scary the first time because you don't know how you'll react until you get the treatment, but as KateB79, and everyone on here can tell you, just follow the advice of the doctors and nurses and stay on the medications as they advise you. I will also add that you can ask any questions here that you need to and there will always be someone who can answer or point you in the right direction. Best of luck for the first round and be sure to check out the Chemotherapy Shopping List. There are a lot of good product suggestions and tips.
xxxooo
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Roseio also eat small amounts of food, keep something in your stomach. That helped me a tremendous amount, and I had no nausea and never took any medication other than what I got during a chemo infusion. I did have to take Pepcid AC for a week after round 5 for gastrointestinal and esophagus burning, but I never threw up. You can read on here about every worst case scenario, which is helpful if you need the tricks, but just prepare for the worst, have everything you can think of on hand, and hope for the best. Doctors are excellent at managing side effects now, and you should never have to suffer. Report everything, no matter how insignificant you think it may be. Remember, they have seen it all, and treated everything.
I am now almost four months out from my last chemo treatment, and all is pretty much back to normal except hair is still growing! And I had neuropathy and round 6 was cancelled, and the burning gut thing. All gone now
Gentle hugs. What chemo are you doing?
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Did someone mention Linus?
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Thank you all for the excellent advice about camping. My husband (who knows me well) reminded me that the evening after my treatment I am usually pretty tired, and I also don't even know how to set up a tent myself! He was pretty much dead set against me camping, and I saw the light. (Okay, I also read the descriptions of motel rooms and thought, hmm, fridge, microwave, nice soft bed, coffee 24/7, free breakfast ... Yeah ...) it helps that hubby is paying for my reservation. (This whole weekend was a present from him, so it's the least he could do, seeing as how he won't be going with me as planned ...) Anyway I am all set and getting excited to spend the weekend writing something other than forum posts, lol.
RavenSally, your photo cracks me up.
Gentle hugs to all, stay strong!
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Came back to say that I saw my parents this morning - they noticed my short hair of course, but had no questions at all! Just complimented me on how it looks. I don't think it was nearly as traumatic for them to see me looking so different as I had feared. (Wait till they get a load of my plucked chicken/baby duck/Linus look though!)
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Rosieo I'm chiming in with everyone. Follow nurse & doctor's instructions. I only take Zofran day of treatment. It was given 30 min before Infusion. Was told it's the "C" that makes one nausea.
And you must EAT. that's what the nurse said at the chemo class. My friend also said that if I couldn't tolerate real food, make milkshake with Ensure and ice-cream. I know that at the medical center I go, they sell Carnation Breakfast drink at pharmacy.
RavenSally LOL!!! Me! I'm Linus!
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Ladies. So many of you responded to my cry for help :-)
I have written down all your suggestions. I guess I am as ready as I can be to get this thing started, athough I count down the days and get that butterfly feeling in my stomach. I am going to get my port put in tomorrow morning. (There goes those butterflys again :-)) And I start chemo 9/29 Taxol and Carboplatin I think.
What a great group of ladies. I haven't posted a lot but I read all your posts. Thank you, Thank you.
I will post as I go and hopefully will be able to help someone else as you have helped me.
Rosieo
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@Rosieo I don't know if I mentioned this before, but for me the port surgery was the least difficult to recover from of the three I've had. And I've been so grateful for it - even with the difficulty the nurse had placing the needle last week, I know I've spared my veins a lot of trauma. Best wishes for an easy surgery & quick healing! Then you can get on with healing from the cancer, which is the really important one, right?
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Afternoon to those in my time zone :-)
Just got back from the pre treatment checkup and bloodwork. Unbeknownst to me, I'm part of a short study in that may remove the need for patients to travel to hospital the day before for bloodwork. So I got two pokes today. No big deal but a brilliant idea for the future to prevent having to make an extra trip to hospital, from being exposed to patients who are contagious, and having vials of blood drawn. I'm optimistic that I won't be requiring treatment o use this device but it will be great for all of those who come after us.
I got answers to come questions about radiation, and about hormone therapy, but very generic answers as my MO is on vacation and another MO was filling in for him. He told me (as I heard in another thread) that radiation should cut the chance of local recurrence at least in half, but what the actual benefit will be is based on what your actual chance of recurrence is (ie if my chance of local recurrence is 10% then with rads it should cut it to 5%.) What I liked about his answer is that he was quite honest when he said rads present a problem when I asked why would I use my one chance to use rads to drop my risk by that small of an amount. It's going to be a personal choice I think. But what he did say was they would use all three treatment modalities to give me the best shot at a cure. So it's the same thing with the HT. He said it would most likely be Tam for 2-5 years and then Arimidex (anastrozole) after that. Pretty much what I expected to hear. Now I have to find out what the risk is with and without HT to make an informed choice about it. Blech.
Forgot to take my dex this am, as I usually go for blood two days before chemo, so I chugged it with a glass of water at lunch. Hope it's not too late. What a dope I am. Anyway, I digress.
It's a beauty fall day in southern Ontario, and I think I'll cut the grass and go for a swim.
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Greetings from infusion #3 from this fuzzy duckling.
Hope everyone is feeling okay today. 
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Love the pictures ladies! To those who are currently flattened by side effects, may the force be with you.
Question: by what physiological mechanism does chemo give you a 'reverse Brazilian'? The only hair that is left down there is the bits you'd normally wax off in anticipation of wearing a swimsuit on holiday.
Just askin'.
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Bluefrog, I'm in the chair right next to you, metaphorically speaking. I like the duckling look! I took the razor to my head again last night, and now it's as soft and smooth as a baby's bum.
MsBrompton, that's hilarious. I've actually got more of a Brazilian going on right now. Maybe it's one of those "it depends on the person" things.
molliefish, I only get blood draws on the day of infusion. I go in half an hour before my appointment with the onc and they run the labs. By the time my onc sees me, we have the results! If we ever have to hold chemo for low counts, I could see how that could be annoying, but I agree that it beats two separate trips.
My MO wants to do my next echocardiogram in two weeks. I've never once in my life had test anxiety . . . until now. Although it's rare, Herception/Perjeta can cause heart problems, and I think they're a little worried about some chest pains I had a couple of weeks ago (which I'm certain were related to coming off of Decadron). I've got my fingers crossed for the millionth time.
I also asked about baseline scans: this practice doesn't do them. She said it's just unnecessary to do PETs or MRIs unless there are symptoms, but I will follow up with her every three months for the first three years, and then every six months until (fingers crossed AGAIN) I'm NED for five.
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Hahahahaha --Jury duty notice for October 19.... I'll be busy celebrating with my last round of chemo that day.
It's funny how things that used to frustrate me I shrug off now or, conversely, I burst into tears. Politics, jury duty, barking dogs, my son losing my credit card...shrug.... However, I've been dealing with my cell phone company over the same problem for four months now, and I finally burst into tears with the guy on the phone exclaiming, "I have cancer, and dealing with this issue every month is NOT how I want to spend any more of my life on earth!" Anyone else bouncing between calmness and having these exasperating moments?
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Sloan15 I know those mood swings! I heard my husband on the phone to some call centre Dobbin the other day "I can't cope with this, my wife is going through chemo...". When he'd finished on the phone I told him off. You can't use MY chemo as ammunition in call centre arguments! But actually, spouses go through it all too, huh?
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