Taxotere, Carboplatin and Herceptin
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Racerdeb Welcome! Somehow I'm hoping that we now have a racecar driver in our midst?
The things I found helpful during TCH:
- Taking Acetyl L Carnitine to prevent neuropathy
- Chewing ice to prevent mouth sores but also using ice on the nails (bags of frozen peas work well) to prevent nail problems from Tax- Omaz has good links to the studies demonstrating the effectiveness of icing (my center had never heard of this practice)
- Staying very hydrated- it reduces a multitude of SEs
- If you receive Neulasta it can cause bone pain- taking Claritin can help reduce this reaction and I found that Aleve was the only over-the-counter med that helped the pain
- Attempt to eat a healthy diet and exercise when you can (even if you can only take a walk)-it's tempting when you are fatigued, have taste alteration, etc to turn to comfort foods and become inactive. I worked throughout chemo and did my best to eat well. I gained +12 pounds but it was all fluid from the steroids and Tax and it dropped off after chemo-no real weight gain. I had been told by my nurses to expect a 10-15 pound (actual) weight gain. Weight gain is not inevitable.
We will all be cheering for you and hoping that you have minimal SEs! All the best...
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racerdeb, dragonfly1 gave you some great tips. I will just add a note about preventing hair loss. I am using cold cap therapy and after 4 of 6 TCH treatments, I have a full head of hair. I can't begin to tell you how this has helped me in dealing with all of this. There is a topic on this message board if you are interested. I have found it very helpful. Good luck!0
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Adding on to dragonfly1's post - take the Claritin an hour prior to the Neulasta injection, and for several days afterward. Also, I added 30g of L-Glutamine powder (10g 3xdaily dissolved in a hot drink) and 1 caplet of B-6 to help prevent neuropathy. Clear all these OTC meds with your onc first though!0
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Thanks, ladies; for all your responses. I can see that this is going to be really helpful to talk with others who are having/have had the same experiences.
Dragonfly1: How much Acetyl L Carnitine and how often? Where did you learn about these therapies? I really don't know anything about this.
AbqTiger: I am sorry that you are here; but thrilled to find another CNM. Where are you? I am in a small town somewhat west of Cleveland, OH. We will definitely have to compare notes about how to make this work inside the job role! I had thought about being on call during those insomniac nights, also, but not sure it will work since we do 24 hr call. Therefore, I can't be on call on a day I am receiving chemo. Maybe I will have to talk with my partners about being creative with scheduling; they have been very accomodating thus far. What do you think about being safe in practice with the "chemobrain" I keep hearing about? That scares me. In answer to your question, I will be getting Herceptin with the T/C every three weeks x6, then weekly for the balance of a year.
Laura5: Googled Penguin caps. Did I not understand something or what? Looks like this would cost about $600 out of pocket per treatment???? There is no way I could possibly afford that. Am I missing something?
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Darlam I learned about Acetyl L Carnitine from the women here but have since read more about it. My MO and neurologist both agreed that very little is understood about neuropathy/nerve damage and had no problem with me taking something to prevent it.
Here is a link to an article: "Acetyl L Carnitine Prevents and Reduces Paclitaxel-Induced Painful Peripheral Neuropathy" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1805703/pdf/nihms-17123.pdf
I took 500 mg daily and bought mine at the Vitamin Shoppe. I did in fact develop mild neuropathy in my hands but I'd like to think the Acetyl L Carnitine prevented it from being far worse and I'm happy to report that it is rapidly improving.
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WOW! It's so great to hear from all of you. I truly appreciate all of the advice. I'll be meeting with my oncologist again tomorrow morning, and I'll make sure to mention some of these helpful tips to him.
I had also looked up the Penguin cap, but it's really expensive. Is there any cheaper alternative?
On another totally different subject, I was so happy to see my favorite racer - Tony (Smoke) Stewart win today at Texas Motor Speedway. Since I'm from Texas, it's my goal to be there for the next race in April even though I know I'll still be doing my final TC treatments.
I'm not actually a race car driver, but I've been involved in running a race track for several years.
Thanks to each of you who have replied and welcomed me to this forum. I know I'll be checking it out daily and hopefully making some new on-line friends.
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I used the elastogel caps (link), ordered 2 from Amazon. I would suggest using 3 or 4 and doing it during carboplatin as well as taxotere. I only did it during taxotere. I still lost hair but had some at the end, never wore a wig and it came back in fast for me.
I saw an oncology nutritionist and she suggested the L-glutamine for the peripheral neuropathy as mentioned above.
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By the way, I was on the local news last week when one of the medical reporters did a story on the Breast Cancer Center at the hospital where I got my mastectomy. Here's a link to the story: http://www.kens5.com/home/SAnurse-is-professional-guide-for-breast-cancer-patients-132553683.html
I've been pretty open about my condition, and I know the extra support and prayers are a big help in my trying to keep a positive attitude.
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darlam and racerdeb, i see omaz sent a link for the elastogel cap, and maybe they are less expensive. I am using Penguin Cold Caps and they are around $530 per month. I have 6 treatments, so I will be renting them for about 3 1/2 months. Maybe someone will be using them at your treatment center and you could share. I think some larger hospitals have also purchased them for their patients use. I live in west central Illinois and I would have been happy to share mine if you guys were closer.
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The elastogel caps are $82.80 with free shipping.
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I'm in Day 6 post 1st TCH. So far today is worlds better than the previous three days! I'm getting Neulasta, and the bone pain has been the worst SE by far (despite taking Claritin 24 and Advil or Aleve). It has even affected my sleep.
Claritin as an antihistamine has never done anything for me, so I wonder if it may not be as effective in my case. But who knows...maybe the pain would have been worse without it!
Chlortrimeton is the only antihistamine that works for me, so I wonder if it would be effective against the bone pain, or if there is something else about Claritin that is supposed to prevent bone pain?
I will be having 5 more tx 3 weeks apart, so hope to get control of this SE!
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ThriverinGA - I was told that the first neulasta shot is the hardest because the bone marrow expands for the first time after that shot. Subsequent shots increase production of white blood cells from the already expanded marrow and can be less painful. I am a big fan of chlortrimeton, have taken it for years. I don't know the mechanism for the claritin effect. For me the first shot of neulasta was more uncomfortable with hip, back and neck pain. I still had some of that with the later shots but much less so. I started the claritin the day of the shot and continued for about 10 days. I also took tylenol.0
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thriver - hello! It can be difficult to distinguish whether the bone pain is coming from Neulasta or Taxotere, or both. The first time you receive Neulasta is when the maximum expansion of the bone marrow takes place, producing the additional white cells. Since it is the first time it is often the most painful. Hopefully the next injections of Neulasta will cause you less pain. The antihistamine properties in Claritin are thought to reduce the edema that occurs with this expansion. Unfortunately the anithistamines will have zero effect on any bone pain coming from Taxotere. I don't think there is any reason you couldn't try Chlortrimeton next time as long as you run it by your onc, some ladies have used Zyrtec as well.
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SpecialK, great info on the Neulasta. I got my first shot on Friday and my bone pain comes and goes. It is pretty intense when it comes but then it seems to ease off. Like ThriverinGA it seems to be worse when I'm lying down in bed and the pain kept waking me up last night. I'm also taking the Alleve and Claritin. Interesting, I didn't know that Taxotere also caused bone pain. If it's from the Neulasta, how long after the shot does the pain generally last? Thank you!
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tipnas - I was fortunate that I didn't have much bone pain from Taxotere or Neulasta. My first Neulasta definitely was mildly painful and I did take the Claritin prior. It was not severe enough to wake me up. I took Tylenol and had good relief from hot (but not too hot!) baths. I found the discomfort to last about 3 days. I ended up testing the relief from Claritin theory on tx#3, I totally forgot to take the Claritin an hour prior to the shot, remembered when I got there, so took it about 30 minutes after. Had the worst bone pain on that shot even though I took the Claritin later. The timing seemed to be the issue for me. Trust me, I never forgot it again!
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The neulasta shot is a time released shot. The pain will last for a couple of days.
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I'm glad that the first shot sounds like it will be the worst
. That makes sense about the bone marrow expanding, Omaz. I started Claritin day before shot, and cannot take Tylenol because my liver enzymes have recently spiked. SpecialK--I took a hot bath yesterday with Epsom salts, and that helped a lot. Last night I took my Restoril for better sleep, and I managed to sleep 7 hours...hallelujah! 0 -
thriver - I think a lot of ladies took Aleve. Sounds like you are doing the right things and yay for the 7 hours of sleep!
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Hello everyone. I am using elasto-gel cold caps. anyone else using these? I could only afford to order two right now. I hope to order more. I start chemotherapy on Wednesday. any advice/tips for me? Also any advice/tips on taking care of my hair through all of this? should I be using any special products?
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LouLa - I used the elastogel caps as well. I only used them during taxotere. I would suggest using them through the carboplatin as well. I don't know if they have changed their design since last year, but be sure there is really good contact between the cap and your head. The top of mine didn't fit tight and that is where I lost the most hair. I contacted them and they wrote me this:
When speaking with consumers that are going to be using our Chemo Caps we usually suggest that you purchase an ace bandage and wrap it around the top of your head (over the cap) and around under the chin to pull the cap tightly and closer to your head.
I washed and brushed my hair regularly, nothing special, and I got a chin length cut before I started.
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Re: the neulasta bone pain-I had really severe pain in my lower back following the first neulasta shot. It hit me approximately 48 hours after the injection and amounted to waves of pain (almost like contractions). I can remember it so clearly even now-Aleve took the edge off but otherwise I had to wait it out. It was only that severe for less than a day. The bone pain was much milder following the remaining neulasta injections thankfully (always approx 48 hours after the injection for me).
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I have to say, I didn't have what I would call severe bone pain from the neulasta - it was pretty manageable, and I had none worthy of medication this most recent round. However, I still feel like crud, with a low-grade stress headache that doesn't seem to want to leave me. I've never felt this puny 11 days after treatment - I am blaming the aranesp, which I completely regret taking even after all the reassurances that the scary SEs are extremely uncommon and not associated with short-term use. The onco nurse tells me its the "cumulative" effects that I'm feeling at tihs point.
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MizMarie--I developed headaches, dizzy spells and lightheadedness almost 3 weeks after my second treatment. I was dehydrated. Make sure you drink juices and sports drinks along with water. Dilute it if you have to. I was drinking about 90 oz of water a day, but still was dehydrated until I switched to a 'mix.'
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More info I came across related to the use of Claritin and Neulasta (I'm always looking for the science behind why things work):
http://www.medscape.com/viewarticle/566300
Do Antihistamines Relieve Drug-Induced Bone Pain?(excerpt)...bone pain is a common adverse effect of these drugs, occurring in 20% to 50% of patients; the incidence is similar for both filgrastim and pegfilgrastim (neulasta). The exact mechanisms of bone pain have yet to be elucidated, but possible causes include change in bone marrow pressure and inflammation.[4] Histamine has been suggested as a chemical mediator causing pain associated with bone marrow edema.[5] Although the role of G-CSF (granulocyte colony-stimulating factor) in histamine release is unclear, this concept could be the basis for anecdotal use of antihistamines to treat G-CSF-induced bone pain.
And, interestingly, the University of VT is currently doing a clinical trial looking at whether Loratadine (claritin) prevents neulasta pain:
Evaluation of Loratadine for Prevention of Pegfilgrastim-Induced Pain
http://clinicaltrials.gov/ct2/show/NCT01311336
Edited in an attempt to get the article links to work but could not-sorry about that but please cut and paste them into your browser...
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mizmarie - how many tx have you had so far?
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omaz. can you tell me your routine when you went in for cheap and used the cold caps? Over all how much hair loss did you have? Are you all done with treatment?
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LouLa - My husband was the cap master! we brought in a big cooler that included the caps and my peas for my fingers and toes. I think they talked about us at the nurses station! I would start cooling my head during the premeds then the taxotere. AFter about 30minutes we would switch caps and my husband would put the first one back in their freezer for 30minutes then we would switch again. On the first infusion it went long and my caps warmed up. That's why I think 3-4 caps would be better. Also, for some reason I didn't think to do the caps during the carboplatin, but it can cause hair loss too so between the warm caps on the first round and the lack of wearing a cap during the carbo I did lose hair. When I would tug on a bunch of hair some would come out. this continued the whole time until it was pretty thin. But I kept my hair line in front and where the cold cap pressed closely on my head I didn't lose very much. I am a believer in their benefit. Hope that helps.
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SpecialK - Thank you for the information regarding bone pain and taxotere. I had no idea! I had my first TCH without Neulasta and had terrible bone/joint pain. 2nd & 3rd TCH were followed with Neulasta and Clairtin, and the bone/joint pain was about the same. This always confused me. The only thing that takes the edge off the pain for me is dilaudid. I just thought I was being a big baby
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Omaz, thank you so much for your help. do you know of a place where maybe I could pick up dome used ones so I wouldn't have to pay full price for a couple more?
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LouLa - I don't know but the company responded to my emails quickly so you might want to contact them directly.0
