CMF Question
Comments
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Carol, so good to hear from you. Please tell us a little about your week in Vegas with the Chemo group and of course we need to know if you WON!!!!
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Annie- thank you - those are all really good ideas. This wasn't just a rash and I haven't been out in the sun. I had lip and hand swelling, trouble breathing and trouble with walking. Why wouldn't they give you the epipen? That was the first thing I thought about asking for. They gave me Prednisome - I'm on day two, but I still had to come home from work today because of extreme itching. Gotta love chemo- the gift that keeps on taking.
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I had almost the same treatment, all slow drip by vein, on week and a booster next, No medicine helped with vomiting, mouth sores, etc, I lost eyelashes and eyebrows, my hair was very thin, I was never heavy but I gained 30 pounds!
Many drugs can be expensive and a patient needs to save them because of it.
I had a friend that had the same treatment and did not have a problem I had all the side effects under the sun. Some we have low tolerance to drugs.
Each person is different and whatever they do they have a reason .
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Good morning CMF'rs! I am a few days out from surgery, and feel better each day. It was a long surgery, and of course I was sick from the anesthesia....hate that!
Still swollen and taking it easy but the girls look pretty good - bruised, but I am happy even with the swelling.
Hope everyone is well, and Pat - hope they figure out the reaction - I would want an epipen too!
Susan
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Yea Susan! So glad you are doing well and that you're pleased with the initial "girls." You're being wise about taking it easy and letting things heal!
It's been rather slow on this thread this summer. I guess that is good news, meaning that everybody is out and enjoying the summer.
Take care...
Rita
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Thought I'd share my warm/fuzzies ...
My trip to Vegas with 13 other gals from the Jan 08 chemo group was phenominal. We all know what our bond is, but how it has become so powerful is amazing. We squeeled as we greeted and hugged each other in the hotel lobby.
We had a preplanned group meal at Wolfgang Puck's the first night, had previously bought tickets for the Beatles Circque Show and even took a limo ride to the Grand Canyon. We rented a poolside cabana for the day time (it was hotter than heck 110) and spent time visiting like know other.
Some stayed 3 nights and others like myself stayed 5. The last night we went to see Menopause the Musical (a riot) !!! It was so sad to say goodbyes as each gal departed, I was the last to leave and had myself a bit of a meltdown at the airport. Good news is that we're already planning for next year.
I see that another group from BC.org is planning a similar trip and I can only hope they enjoy themselves as much as we did.
This past weekend was my stepdaughters wedding that has been a work in progress for the past year. The day turned out perfect.
I'm up to walking now, the 3day/60 miler is 6 short weeks away!
Tomorrow I have a consult appt with a PS. Initially I was totally opposed to recon, funny how time can change one's mind. Although I more than likely will not do surgery, having an understanding of what can or cannot be done gives the power of that decision back to me.
Hoping that these summer months have brought you each some sort of peace and joy!0 -
Thought I'd share my warm/fuzzies ...
My trip to Vegas with 13 other gals from the Jan 08 chemo group was phenominal. We all know what our bond is, but how it has become so powerful is amazing. We squeeled as we greeted and hugged each other in the hotel lobby.
We had a preplanned group meal at Wolfgang Puck's the first night, had previously bought tickets for the Beatles Circque Show and even took a limo ride to the Grand Canyon. We rented a poolside cabana for the day time (it was hotter than heck 110) and spent time visiting like know other.
Some stayed 3 nights and others like myself stayed 5. The last night we went to see Menopause the Musical (a riot) !!! It was so sad to say goodbyes as each gal departed, I was the last to leave and had myself a bit of a meltdown at the airport. Good news is that we're already planning for next year.
I see that another group from BC.org is planning a similar trip and I can only hope they enjoy themselves as much as we did.
This past weekend was my stepdaughters wedding that has been a work in progress for the past year. The day turned out perfect.
I'm up to walking now, the 3day/60 miler is 6 short weeks away!
Tomorrow I have a consult appt with a PS. Initially I was totally opposed to recon, funny how time can change one's mind. Although I more than likely will not do surgery, having an understanding of what can or cannot be done gives the power of that decision back to me.
Hoping that these summer months have brought you each some sort of peace and joy!0 -
Hello All: Got back yesterday from my trip to Delaware. We had such a good time. My dh and my kids went para-sailing which they loved. I was not up to going, I felt a little queasy. We went to the outlets, to the beach were the wild ponies are and to a water park. I felt bad, I usually love all the water rides, but after doing 2 or 3 of them I was done for the day. My son could not understand why I would not go back on. But after the initial 3 I felt really sore. And mostly we relaxed at night. My dh and I did sneak away for a nice dinner. Delaware is beautiful and where my brothers place is is really nice. We are just staying home for the next couple of weeks and then heading to Albany where my son is performing in the NY Honors Choir. We will visit Saratoga while we are there. At the end of Aug. my dh surprised me with a 4 day trip to Vegas. Neither of us has been there and we are looking forward to it.
I am glad to see that everyone seems to be enjoying there summer.
Annie: I am glad that you are doing well and it was good to hear from you.
Susan - Glad your surgery went well and hope that you are still feeling well.
Pat - Sorry to hear about your reaction. Hope that was a one and only time that happens for you.
Ritajean- I know what you mean about the weather. But now it seems to be getting really hot here in NY. At least the humidity is high.
golfer779 - Glad you had such a good trip to Vegas. I hope we enjoy ours!!! And that your step daughters wedding was so nice.
Enjoy your week,
Colleen
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Hi All,
Had my second CMF treatment last Thursday. That went OK, but Day 2 was terrible. Then things improved and today (day 5) I'm back to normal. I think that the anti-nausea drugs have their own side effects: Zofran gives a headache and Compazine causes serious drowsiness, and besides, they don't help much with the nausea. Here is another weird thing: I am a coffee drinker, but lately I had no desire at all for coffee. Today I tried coffee after several coffee-free days, and it tatsted like mud. Did anyone else have this experience? Also, hair loss started after exactly 3 weeks. It is not extreme, but my hair is thin anyway, so I expect to have to use the wig eventually.
Nice talking to you, and best wishes to everyone. Elisheva.
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Good monday ladiebugs!
Hope everyone is feeling OK today, and hope that rash is under control Pat! They would not give me an ephipen as i did not have swelling of anything like that....they did say if that happened they would get me one as a precaution. sure hope you are better now!
Colleen, how nice to ehear from you, and Carol, sweetie, how are you? Your trip sounds wonderful!! You are completely right on the recon question...one of the reasons I went ahead with it, is I am hm, how do I put this, sort of a control freak? It did indeed put it back in my hands and back on my chest also. It isn't easy, but it is doable. PM me with any questions you've got; I had a lat flap, I would not do it again. However, if you are young and fit, it's the best option, and I know you are young and fit!
...alot of options out there, including being free of boobies .Sue, glad to hear the surgery went well. You give those girls a few months and oh, the lovely changes that occur! It is truly the fun part of this whole journey, and yes, I know that sounds crazy, but for me, it was.
Elisheva, I couldn't drink coffee at all during chemo. It was, as far as I can remember, sort of like feeling a little bit preggers. Those first three aversion to foods months. Just go with it, your body will let you know what it likes and what it doesn't. I went to tea, it was fine, then after chemo, went right back onto coffee.
Love to all you beautiful ladies, ladies in waiting, ladies in txmnt.........beautiful, all of you.
xoxoxo
annie
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Carol, your trip sounds wonderful! It is indeed amazing how close we become to our bc sisters, isn't it? It's really just unexplainable...............it just happens. I knew you'd have a ball!
Elisheva, Annie has given you good info. Just listen to your body. I think your taste for coffee will return when the treatments are over. I didn't drink very much of it either when going through the treatmetns.
Colleen, what a nice hubby you have. I think he is indeed a "keeper!" You will love Vegas! There is so much to see and do out there. I'm also glad that you enjoyed your family vacation. Next year at this time, you will be delving into EVERYTHING and nothing will bother you. You'll be back to your ol' self again!
Hugs to all of you!
Rita
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Hi all
Elisheva..I too could not stand even the smell of coffee when I was on CMF..
I used the compazine suppositories versus the pills...seemed to work better
for me, plus it did not go through my digestive system.
Hi Rita...good to be home...but I really loved that long, long drive.so many neat places and people to see..
Hugs all around...SoCal
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I'm through-I'm done- NO MO CHEMO!
I went in to have chemo today. Saw my onco - told him about the allergic reaction and he said that's it , you're through with chemo.
Now on to Femera.
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I'm through-I'm done- NO MO CHEMO!
I went in to have chemo today. Saw my onco - told him about the allergic reaction and he said that's it , you're through with chemo.
Now on to Femera.
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Hello, Ladies!
I just wanted to introduce myself and tell you how happy I am to have found this thread. After reading many other threads I started to feel like I was a minority, and one of the lucky ones to be receiving CMF. I finally decided to search on CMF, and there you were!
Elisheva, nice to see you here. Your posts in other threads have been very helpful.
I just started chemo Monday, the 27th. I am getting Cytoxan IV, and M and FU push. I don't know what other meds were in the IV. I do know there was some type of anti-nausea meds and, so far, I have had no problem with nausea. In fact, I received a call the other day from my pharmacy that my anti-nausea prescription was ready, and I didn't even know my onc nurse ordered them. It is called Prochlorperazine, but I have not taken it yet.
I did have a problem right away with constipation, which I never have. I found an unopened box of Correctol and took one before bedtime. The next day I was back to normal. I have been drinking a lot of water (Crystal Light).
I am diabetic, type 2, insulin-dependent, and noticed that my blood glucose (BG) shot up to 314 when i got home. After tx I was starving, so my husband and I stopped at Denny's. I suppose it could have been the pancakes and syrup that did it...lol! But I do notice that even when watching my diet, the BG is a bit higher than it had been. I need to find out what else they put in that IV, maybe steroids of some kind, which I read somewhere will elevate the blood sugar. Are there any diabetics on CMF?
I thought I would be lucky to only have to get chemo every three weeks. The schedule will be every 3 weeks, times 6. However, I didn't realize I still had to go every week for something or other. Chemo, then labs, then doc. My chemo nurse said, "From now on, you're MINE!" Then, another six weeks of radiation.
I get my chemo tx in the chemo cafe at my doc's office. Everyone is so great, and they all have just the right personality and attitudes for this kind of work. The hardest part of the whole thing, so far, is finding a good vein. It took several tries and lots of bruises before they found a good one. I'm hoping that I won't need a port.
I wondered what I should take with me, too, so I stocked up on magazines, puzzle books, peanuts, pudding cup, water. I browsed through two of the magazines, and that was about it. It was so busy with people coming and going, lots of conversation, and a big screen TV. Next time, I'll just bring the magazines and water.
Oh, one other thing I wanted to mention. One of my husband's co-workers said that eating bacon before and after chemo helped with the nausea. I love bacon, but I would be afraid that it would give me heartburn or make me sick. Has anyone else tried this?
I am trying so hard to stay positive, and know that some day all of this will just be a distant memory.
Thank you all for sharing!
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Welcome to the CMF thread, Susan. We are sorry that you had to "come find us" but the women on this thread are awesome and will be able to answer any question you might have.
I have never heard the "bacon" idea to avoid nausea. In fact, it is best that you don't eat your favorite foods the week of chemo as some have then been unable to eat these fodds when the treatments are done. Our brain plays lots of tricks on us as we go through this journey.
Constipation will probably be a continuing problem throughout the treatments so tackle it early before it really gets you. I always took the constipation pills and nausea pills immediately after an infusion to ward off these problems, as it seems to be easier to be preventative than to treat it once it arrives.
Be sure to drink plenty of water. That will help flush the chemicals out of your body. Also ask for ice chips while doing your treatments. Sucking on them will help to ward off the mouth sores that are often assoicated with CMF.
I am assuming that you had a lumectomy since you are doing radiation. Am I correct?
Hugs to you as you continue on your journey and deal with this nasty disease. You are so right.............one day this will just be a distant memory so keep that in mind and take it one day at a time!
Rita
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Ritajean, thanks for the advice. Yes, I had a lumpectomy. The surgeon did a great job. I'm having the most trouble from having 14 nodes removed. Still experiencing pain after 7 weeks post surgery, but it's definitely better than it was.
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Patme -congratulations on the end of chemo!!!!!! You must be so happy. I know I was!
SusanFL - welcome! I completed my CMF in the end of June. I am happy that you found this thread - I know I felt a bit lost until I found it, and it has been such a godsend. It sounds like you are off to a good start.
Susan
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Hi Everyone,
My name is Sherrie (pronounced Cherie) and I was very happy to find this forum. I live in NH with my 8-year old daughter. I was recently diagnosed with IDC and DCIS bilaterally and underwent bilateral mastectomies July 23rd. I am still recuperating and finding the axillary dissection has caused the most discomfort with the numbness and tingling and limited movement. The left side is worse as they took 20 nodes on this side...good news only 1 positive. I have a 4 hour meeting with the oncology team next Monday which include Rad Onc, Med Onc, Surgeon, nurse, social worker, and physical therapist. I am also returning to work on this day! I am a nurse, but it seems a little overwhelming so I asked that the wrap up session where I make decisions about the treatment options be held with the surgeon separately. Has anyone experienced this?
I will need radiation because they didn't get clean margins with the DCIS. I am also considering an oophorectomy as I am 42 and there were multiple malignant nodules bilateral that were ER and PR +. Tamoxifen is a given... Has anyone had an oophorectomy and how did you time it with all the other treatments. I am leaning towards CMF because of the more tolerable effects which is important given how young my daughter is now. I also like it because you can have radiation simultaneously but I don't know if anyone has done this. If you have, I would love to hear your experience. :-)
Thank you!
Sherriie
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Hi Susan,
Welcome to this thread. Nice talking to you again! We have similar treatments, except I'm a bit ahead of you - had my second treatment a week ago. It was a little harder after the second time, but as we all know - everyone's reaction is different. The little hair loss I had experienced has almost stopped, and I hope it will not resume. I hope you have an easy time. CMF is definitely easier to take than the other drug regimens.
Elisheva.
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Hi Susan and Elisheva,
Nice to meet you both... I imagine I will soon be joining you on the CMF pathway. Glad to hear that you have both done so well with your first treatments. Susan - I am not a diabetic but I am a nurse and I would definitley have a discussion with your oncologist if they are using steroids for nausea control and your blood sugars are elevating. :-) Are you both on 3 week IV cycles?
Take care,
Sherrie
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Hi Susan,
My first sentinel node was positive on the left so they did axillary dissection on left (20 node) and did another 5 on the right. I am 12 days post op and have tingling, numbness and cannot move the left arm higher than shoulder level without getting shooting pains. I read the numbness and tingling could be temporary or permanent, but I am most concerned about being able have full use (range) of the arm. Has your movement improved with time? Are you working the a physical therapist? I hope it is getting better for you. :-)
Sherrie
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I just wrote a long post and lost it all. That's what I get for not using a text editor like I usually do. I don't know what the heck I hit, but it went to a new page. I will come back later and post again.
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Sherrie and Susan,
Sherrie, I hope your pains will be better soon. I think the danger when many nodes are removed is mainly lymphedema of the arm. I hope you don't get that.
It is interesting what you wrote about steroids and diabetes. I am not a diabetic but have prediabetes, and because of that my oncologist specifically avoided prescribing the use of steroids. There are other measures that can be used for nausea. To answer your question - I am on the 3 week IV cycle. Hope that all goes well for you.
Elisheva.
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bump
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Sherrie: I had rads simultaneously with chemo. Due to timing, I had to do it that way. I did not find the rads to be particularly difficult. But the combination made me far more exhausted than either would on its own. By the end, I could hardly walk around the block. If you have any specific questions, feel free to private message me.
To everyone else: I hope you have a wonderful day.
Mandy
PS I wrote a long post about my trip and managed to delete it. Will write more later.
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Sherrie, I had three CMF chemo treatments and then broke for the rads. When the rads were finished, I came back and finished the last three chemo treatments. All my chemo treatments were IV infusions every three weeks. Although I hated to come back to finishe the chemo, I think the side effects of the chemo were less for me at the end because some of the chemicals left my body during the rad session and it wasn't quite as cumulative for me.
Rita
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Thank you for all the feedbackand support. It is nice to know that RitaJean and Mandy had experience with radiation treatments while undergoing therapy. I am hoping to do the same. My surgical follow-up is being done my the reconstructive surgeon and she is sending me to therapy for the limited arm movement. She is also going to fit me for a sleeve to hopefully prevent lymphadema. I developed cords under my arms from the dissection and node removal. She suggested massage. Is this effective? Elisheva... I am not diabetic but I am hoping to avoid steroids if possible given all the potential side effects. :-) My surgeon who did the mastectomy does not want to do an oncotype... she said that because I have a positive node I need chemo and it is unnecessary. I disagree that it is unnecessary... as I am ER and PR+ I think it would be beneficial to have this information, but I thought this would be a qood question for this group. I am also being BRCA tested given my age and bilateral malignancies
Thank you!
Sherrie
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Sherrie, I think that many surgeons believe that chemo is beneficial for anyone who's had node involvement. Some call it the standard protocol for that diagnosis. That doesn't mean that you should blindly accept this as your standard of treatment. Second opinions are always good and often relieve your mind and give you a better foundation on which to base your decisions. The decision-making process is one of the hardest parts of this journey. You can request the oncotype test anyway and then make your decision, too. Perhaps you should discuss this with an oncologist in your area and get another opinion.
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I just got back from my long awaited vacation....I had waited for a year since last year's was postponed so I could have surgery. In fact, I left on the anniversary of my diagnostic surgery...a good way to spend the anniversary and went to Paris and England. I spent most of my time in Paris with a close friend (who is French), which made it better. I loved Paris and even managed to speak some French there. And the birthday party for my 95 year old cousin in England was fantastic...I discovered that I have many English cousins that I did not know. My hubby joined me for a week and went to the family party with me as well as traveled to see a close friend who lives near Cambridge. I stayed on for a week in London at my close friend's home....we stayed up and talked "girl talk..." It was great. My last night in London, my friend of over 40 years and I treated ourselves to dinner at Gordon Ramsay's restaurant on Royal Hospital Road (he has several restaurants in London) It was fantastic...if you ever want to mortgage your house in order to have dinner, it is the place to go---the food was amazing; the service was superb without being snotty; and the restaurant actually had a jolly atmosphere--people were enjoying themselves--it wasn't one of those stiff places--but was full of laughter and happy people. A perfect place to go celebrate our long friendship. .... Of course now that I am home for 2 days, the holiday seems to have vanished somewhere. But I think I'll start planning the next one.
I just wanted to add that I never would have gotten through CMF without the wonderful gals on this thread, who took the time to perk me up when I was down and who gave good advice about things to do for the SEs. So thank you to all of my friends here too!!!0
