CMF Question
Comments
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Curveball- WTF !! I am reading and am in shock. I don't even know what to say. You are in my heart.
Has anyone experiences inner nose sores post chemo? I finished in November and still having issues with a nose sore.
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@Dianarose,
yeah, they were discovered more or less by accident on an ultrasound for something else, five months into the CMF regimen, but not identified as mets until a month after I finished up. Given the size (the bigger of the two was 37mm across on the first scan), I suspect they were there from the start, but since they don't cause any symptoms, they flew under the radar. I've been on anastrozole since finishing the CMF and have a followup scan next week to see how it's affecting the mets. I also had a PET scan yesterday (no results reported yet) to check for mets in other organs and clarify treatment options. If the two in the liver are the only ones it may be possible to remove them surgically, blast 'em with radiowaves or get rid of them some other way.I had some bleeding in my nose during CMF--not enough to be an actual "nosebleed" but enough to be noticed on tissues. But they cleared up fast after I finished the chemo. November is almost 6 months ago. Anything that hadn't healed in 6 months would certainly concern me, at least enough to ask my doctor about it.
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@curveball, sorry to hear about your story after CMF. That is crap. Beyond Crap! My fingers, toes and everything else that can be crossed is crossed for you that there are no other mets lurking around and that the 2 in the liver can be removed or be rid of quick smart. Total shock for you. But we all know that you are strong, and will get rid of this liver bitch. Keep us posted you are in my thoughts x
@Dianarose, I only had a few bleeds when I blew my nose in a tissue lasted a couple of weeks only after CMF and never really thought of it as anything other than when I was congested on the CMF that it was just clearing up. Best you mention it to your onc but sure there is nothing to be worried about.
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Curveball, sorry to hear about your new diagnosis. I'm hoping they can blast those mets out of there and also want you to know that I know of someone who has had liver mets for over 20 years and is still going strong. Sending you a hug and a prayer.
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Curveball- did you have any scans before your surgery? They wouldn't let me have my surgery until they did all the scans for mets. It totally freaked me out.
Sorry you have to go through more crap. I pray there are not any more anywhere else and they can zap the SHIT out of them.
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@Dianarose, I had a breast MRI before surgery to see if there was more cancer than the lump I found, but not a full-body scan. I don't think the MRI went down low enough for my liver to be visible. I am having a consult at Seattle Cancer Care Alliance and will ask radiologist to see if there is anything to be seen on the MRI that will give a clue as to whether the mets were there all along and how chemo affected them. That MRI is the only scan I had prior to surgery & chemo, so if it doesn't show the liver there is no way to know. So far my treatment is the same as it would have been if no mets or not discovered. I am taking anastrozole and so far don't have any side effects from that med or any symptoms from the mets.
@Mandy1313, that is amazing. Would you write about the 20-year survivor on the "Liver mets feel like I am dying" thread too?
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Curveball- I had 2 Mri's. one CT, and one PET scan prior to surgery. I also had 17/17 positive nodes so they were skeptical.
I was just reading about Femara because I have to make a choice soon and it said one of the common side effects is hair loss, so that one is out. I just got my hair back. How long have you been taking Anastrozole? They all scare me.
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Diana, I was on arimidex for years and had no hair loss
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@Dianarose, I have only been taking anastrozole (generic Arimidex) since I finished chemo in January, and still have a full head of hair. I'm still wearing my yarn braids for extra length but my real hair is growing. In fact I suspect I am starting to get a bit of a mustache as the anastrozole reduces the amount of estrogen in my system. I have dark hair, so if it gets any more pronounced I may have to do something about it! That is the only side effect I have noticed so far. Long-term, it can also affect bone density, but I don't think I've been taking it long enough for that to show up.
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I thought I could see a mustache, but it was only skin discoloration..the dermatologist zapped it with a laser and away it went...
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thanks curveball and all. This time I feel like such a wimp. They said I woulnd't need a port-I had to get a port. They said my hair would not fall out-just thin...going to have to shave my head today, it is ridiculous, so similer to my ACT regiment. The pills make me feel so sick for 14 freakin days and other say they weren't bothered by the pills. I don't get it and feel like I am just the freak that can't handle this shit-do you cuss here?:)
curveball-so sorry that you are now stage iv now. Did you realize this while finishing our CMF? Did you do Classic CMF? Sorry for all of the questions. My first go round-I was a rock. This round I am negative nilly and don't really trust anything.
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subelle: I had a different regimen of CMF--every 3 weeks IV for 8 tx. But while I did not lose my hair (it thinned but I did not need a wig), like you I tried out each possible side effect. I would come onto this site and wonder why I had the side effect that no one else had. Some of the gals who were on CMF when I was seemed to breeze through with no problems at all. But in the end, I survived and made it through the long treatment. I know it is discouraging to be the one with all of the side effects---talk to your onc because some of them can be taken care of. Hope that things soon look up for you. Hugs. Mandy
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I had the side effects, but back then, there was no BCO like now to help. They also did not have the meds to help like now. All we had for nausea was compazine. Had to take it before the chemo. I had horrible diarrhia for months but they only had Immidium AD?
They were still experimentling with Neopogen so I had a horrific reaction until I figured out I could give myself a lower dosage and it would still work. I got progressively weaker and weaker. It was not the easy ride some have had..so Suebe I can relate to what you are saying sooo much. I had no support group oh, I did lose half my hair. My main problem was liver damage. My oncologist just looked at my blood which didn't show it. That is why I warn people to stay aware. But here I sit 12 years later. I send my warmest hugs..0 -
@suebele, I don't know which CMF recipe is "classic". I had oral cytoxan every day and weekly infusions of the methotrexate and 5-FU, for 6 months. The growths in my liver were discovered before I finished chemo, but I didn't find out for sure that they were mets until about 6 weeks after I finished.
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I had the MF infusions on day 1 and 15 with oral cytoxin for the first 14 days, then two weeks off for six months
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suebele,
Hang in there, maybe it will get better. My first 2 treatments were horrible. I was throwing up, terrible fatigue and every time I combed my hair there were so many strands coming out and I thought I would have to wear a wig. I actually did get one. I couldn't sleep, I had bags under my eyes, I couldn't sleep. I was a wreck.. Make sure you let the nurses and onco know about your side effects. I was taking only Zofran, but they included Compazine to it and that has helped tremendously. I also have neuropathy of my legs and believe it or not my nurse told me to take B6 vitamins and it helped a lot.
I also went to the Look Good Feel better I think is the name. The cancer society. They gave me a bunch of make up. I started wearing concealer under my eyes and that helped. I started juicing with my nutribullet. Get proactive. Initially everyone was telling me how terrible I looked and I felt the same way but once my team was able to get my meds right. Xanax for anxiety to calm me for overthinking everything, Ambien helps me sleep, because I was getting maybe 3 hours sleep. (it helped with the dark circles and bags) . B6 for my legs, colace for constipation (it was horrible), and additional nauseous pill. Also strands still come out but I still have a head full of hair. it's strange how my hair is getting longer but a little thinner. No one can tell but I know. I have hair all over me. I shed like a dog. Long strands of hair on my clothes, sometime I see on my desk at work, but it's still a lot on my head so c'est la ve
I still feel it. I think I'm going through menopause. I was up sweating last night and had hip pain (from the neulasta shot) but I popped a Claritin (allergy pill I read on this site) and that helped me with the hip back pain. Just hang in there because I'm going on my 5th treatment and I will tell you after the 2nd treatment I was going to quit.
Ann
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Thanks everyone. I did see my oncologist today and feel better about where I am. "Classic" is just that-cytoxan pills plus 2 infusions of Metho and 5Fu. He explained that doing chemo for a 2nd time does effect you and side effects can be worse. My blood was not good today so I cannot start my treatment Thursday and he will more thank likely alter my dosage. Thank goodness! Maybe the next one will be better. I did shave my hair today and feel better. Ann thanks for all the great info.
I appreciate the help!
Susan
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@softness, I don't know if you are going through menopause. I used to wake up sometimes two or three times during the night with my PJs soaked in sweat, and I was already post-menopausal when I started chemo. I think maybe the CMF causes night sweats all by itself. I hope your meds continue to keep disagreeable side effects down to a minimum.
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Dear Peggy, thx bunch for the arm wishes! Two more dys to come to it. Yes , I'm scared nt just the SE but also the any changes. It helps a lots by reading the post, however, the anxiety still got me really bad....
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Just want give everyone here a warmest hug!, love all of you
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Haven't been here for a while. Nice to see so many women still helping each other out with advice on side effects, etc.
It's now three years for me since I finished chemo and rads and the memory is still sharp.
Curveball, so sorry to hear of your change in diagnosis. I'm suprised that they didn't do a full body scan on you before you had surgery and underwent treatment. I had breast MRI, CT and CAT scans before surgery. Surgeon just wanted to know as much as possible beforehand. How did they make the decision to give you CMF rather than one of the newer chemo treatments?
Everytime I see my oncologist, the bloodwork includes tumor markers. There seem to be mixed views on how useful they are. This oncologist would only do scans if I was complaining of some symptoms that she wanted to investigate. Do the rest of you have follow up scans/testing for tumor markers?
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I have had no testing for tumor markers after the initial DX. If I have a symptom my onc may order tests like a bone scan or MRI. I still see my onc every six months but it is because we did watchful waiting on atypical ductal hyperplasia.
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At Sloan they refused to do any scans. I just had my first bone scan because of tremendous leg pain that I'm sure was a result of Aromasin.
I asked him about tumor markers and he said it was meaningless and he didn't do that test but they did at Sloan.
Unbelievable, no? It seems to be a matter of opinion, no fact.
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I think we are always going to have anxiety about this no matter what. I'm almost done with CMF and I'm starting to have nightmares about recurrence and bone mets. And i'm IN treatment. This certainly has been a life changer. 7th one done, one more to go! May 22nd cannot come soon enough! :-)
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Before my surgery I had a cat & bone scan. After surgery and before chemo started I had a PET scan & Muga scan for my heart. I'm wondering after chemo will I have to go through all of these scans again?
Congrats Robin!!! You're closing in to the finish line!!!!
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I am about to have my 8th and last CMF next week. I am having a hard time boucing back from #7. I had it a week ago and the fatigue is umbelievable. I am a runner and have been running through this when I can, but this week I can barely get out of bed. I get nauseous during the day. I am also working full time and commuting via mass transit in NYC so its exhausting. I am doing the CMF via IV every 2 weeks. HAs anyone had these side effects toward the end.
@timbukto - I am also going to Sloan. Did not have one scan yet. I got my BC from radiation to treat hodgkins disease and had a double mastectomy, but no mention of any scans
@Afn17 - welcome and glad to hear that your first treatment went ok. As you get toward the end the fatigue really hits you.. Sounds like you are tolerating really well.
@Robin3 - congrats on being near the finish line. I am almost there myself and have these fears that while I am so happy to be done, i no longer have a safety blanket. I will be on tamoxifen for 10 years, but still have this fear.
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K C that is really a tough schedule you have with all you do. Yes, it was cumcultive for me. The first ones not so bad, I think the apprehension is always with us of recurrence, but we think about it less and less.
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after my dx and lumpectomy with positive nodes, the BS immediately issued MRIs, CT scans ,Bone , Chest and liver scans.
Because I got this from prior chest radiation from Hodgkin's Lymphoma and had the Adriamycn 17 years ago, I had a heart test also. It was good but they still opted for Taxotere and CMF
Robin, 1 more to go, bring on 22nd May
kcmanis, congrats to next week...bet it can't come quick enough for you.
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Traii - I had the same thing.. Radiation caused my BC from HD 20 years ago. I also had Adriamycin. Im surprised you had Taxetore. Are you finished with treatment? Do you know if you will have anymore scans?
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kcmanis, hi.
I had MOPP, ABVD , Stem cell transplant (after relapsed while still in treatment) and something Chopp ?? Plus many rounds of radiation .
Why you suprised with Taxotere ? How many rounds of CMF did you do hun ? I only had 3 x Tax and 3 x CMF. Finished treatment in March
I'm having the BMX end of this month hopefully.
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