Hello everyone!
I am 46 year old female patient, with stage III myeloma. I had several tumors on my rib cage, and a large one at the base of my spine. I was diagnosed in March of 2014, and immediately had plasmapheresis and began radiation. I started chemo in April, with 2 cycles of Revlimid, dexamethasone, and Velcade. I am also taking Zometa every 3 weeks.
Recently, my doctor decided to stop the Revlimid and switch to oral Cytoxan (550mg) because of a pulmonary embolism (PE) I had 15 years ago. He is concerned about DVT [deep vein thrombosis].
I am feelilng really anxious about the switch. I was responding well to treatment, and able to work from home while on the Revlimid. I was also able to keep my hair, and had enough energy to care for my family.
Does anyone have experience with oral Cytoxan? Will I still be able to care for my kids or work from home? Am I facing complete hair loss?
Forums
-
Dana5 - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 45
Re: Oral Cytoxan (cyclophosphamide) side effects
Hi Dana5, Welcome to the forum. I am sorry to hear about your myeloma, and your worries about stopping to take Revlimid. Would you still be taking Velcade though? Haven't taken Cytoxan except for stem cell harvesting. I did lose my hair then, but I think that the dosage for ongoing chemo is a lower dose than that.
I had 'Velcade/dex' for induction chemotherapy and it worked well for me. Hope that helps!
I had 'Velcade/dex' for induction chemotherapy and it worked well for me. Hope that helps!
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Oral Cytoxan side effects
Hi Dana, I am a 50 year old female (mother of 4) currently completing my 4th cycle of oral Cytoxan, subq Velcade and dex. I have found this to be an easy regime, with little to no unpleasant side effects. It has not impacted my ability to "carry on as usual." I have experienced some substantial hair thinning ( it can be alarming after a shower!) but I still have a full head of hair. In terms of being out in public, no one would be any the wiser that I am under therapy. Hope this helps and best of luck to you.
Re: Oral Cytoxan (cyclophosphamide) side effects
I have had Velcade / cyclophosphomide / dex three times for relapses of multiple myeloma diagnosed in 1996.
In my initial chemo back then, prior to stem cell transplants, the cyclophophamide dose was a high dose and, yes, I lost my hair - on two occasions. But the dose given with subsequent chemo has been much smaller and while there was some hair loss, it was only to the point of my hair being thinner than it normally is. I did not lose it totally or in large patches.
As for your other questions ... you may very well be able to work from home and care for your family, everyone reacts differently. In my case I was exhausted and thankful that I was retired and my family grown. I wish you well and hope I have gone some way to answering your concerns
In my initial chemo back then, prior to stem cell transplants, the cyclophophamide dose was a high dose and, yes, I lost my hair - on two occasions. But the dose given with subsequent chemo has been much smaller and while there was some hair loss, it was only to the point of my hair being thinner than it normally is. I did not lose it totally or in large patches.
As for your other questions ... you may very well be able to work from home and care for your family, everyone reacts differently. In my case I was exhausted and thankful that I was retired and my family grown. I wish you well and hope I have gone some way to answering your concerns
-
SusanMary - Name: Susan Brown
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 1996
- Age at diagnosis: 47
Re: Oral Cytoxan (cyclophosphamide) side effects
Hi Dana,
It sounds like you have had very similar treatment to mine. I started the Cy/Bor/D regimen last December after having been on Revlimid/Velcade/dex as part of a clinical trial. We had dropped the dose of the Revlimid from 25 to 15, and cut out the Velcade and the dex due to some side effects I was having (mostly from the dex.) Eventually my kappa light chain numbers started to go up again and my doctor wanted me to go on this new drug combo. I think he was concerned about secondary cancers from the Revlimid as well as thinking about the fact that I might respond better to a new drug I hadn't had before.
I also was nervous about starting Cytoxan, because I got it when I had my stem cell harvest, and did lose about 2/3 of my hair then. But this oral Cytoxan dose was much lower, and while I had some hair thinning, it wasn't enough to be noticeable to others. I suppose if one were starting out with very thin hair it might be an issue, but although it is disconcerting to see it coming out in the shower or on the comb/brush, it really wasn't bad. I didn't have bald "patches" although if I pulled my hair back you could see it was thinner underneath.
I also experienced some mild nausea the day after treatment. During treatment (which was essentially me going into the infusion center for the 11 Cytoxan pills, the 10 dex pills and the Velcade shot) I would also get an anti-nausea pill. I think this kept the nausea at bay for most of that day. I learned to take another one that evening before bed and the next day if necessary. Fortunately, this nausea just lasted the one day so it was bearable, and I wasn't throwing up, just queasy.
Now I've stopped the Cytoxan and the dex as I'm on a sort of "maintenance" regime until my transplant some time in June or July. I did do very well on the Cy/Bor/D combination and it got my numbers back down to where the doctor wants them pre-transplant.
I hope this helps! All best wishes,
Karen
It sounds like you have had very similar treatment to mine. I started the Cy/Bor/D regimen last December after having been on Revlimid/Velcade/dex as part of a clinical trial. We had dropped the dose of the Revlimid from 25 to 15, and cut out the Velcade and the dex due to some side effects I was having (mostly from the dex.) Eventually my kappa light chain numbers started to go up again and my doctor wanted me to go on this new drug combo. I think he was concerned about secondary cancers from the Revlimid as well as thinking about the fact that I might respond better to a new drug I hadn't had before.
I also was nervous about starting Cytoxan, because I got it when I had my stem cell harvest, and did lose about 2/3 of my hair then. But this oral Cytoxan dose was much lower, and while I had some hair thinning, it wasn't enough to be noticeable to others. I suppose if one were starting out with very thin hair it might be an issue, but although it is disconcerting to see it coming out in the shower or on the comb/brush, it really wasn't bad. I didn't have bald "patches" although if I pulled my hair back you could see it was thinner underneath.
I also experienced some mild nausea the day after treatment. During treatment (which was essentially me going into the infusion center for the 11 Cytoxan pills, the 10 dex pills and the Velcade shot) I would also get an anti-nausea pill. I think this kept the nausea at bay for most of that day. I learned to take another one that evening before bed and the next day if necessary. Fortunately, this nausea just lasted the one day so it was bearable, and I wasn't throwing up, just queasy.
Now I've stopped the Cytoxan and the dex as I'm on a sort of "maintenance" regime until my transplant some time in June or July. I did do very well on the Cy/Bor/D combination and it got my numbers back down to where the doctor wants them pre-transplant.
I hope this helps! All best wishes,
Karen
-
Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Oral Cytoxan (cyclophosphamide) side effects
Thank you so much for sharing your story. It makes such a difference to be able to talk to people who understand what myeloma and the treatments do to your body, and quality of life. This disease reminds me of a bottle of Italian dressing when youi turn it upside down. You feel overwhelmed at the diagnosis like someone has turned your life inside out, but are reminded that when everything settles all the good stuff will be at the top.
-
Dana5 - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 45
Re: Oral Cytoxan (cyclophosphamide) side effects
Just in case there is another member of this forum who is nervous about this cocktail, I thought I should post an update.
I am on my fourth cycle of Cytoxan, dex and Velcade. For the most part, the therapy has been manageable. I do experience a migraine on the first day, and nausea for the first 48-72 hours. I can usually get by with my anti-nausea meds and a good nap or an OTC headache treatment. I am noticeably fatigued at times, but as you know, that could be a number of things. My infusion nurses are great about monitoring my numbers and requesting transfusions when the need arises.
My skin is dryer than normal, and I have been keeping my scalp oiled in hopes of not having dry brittle hair. I am African American -- my hair is usually thick and curly -- and I didn't notice any thinning. In fact, my hair grew, and I needed a new cut. I do have a "stress spot" at the top of my head that always thins when I am stressed. It's been that way since college, so I can't attribute that to myeloma or the medications. I kept checking that spot, so I just went to my stylist and had my hair cut so that the "stress spot" is no longer noticeable. One less thing to worry about. I now look exactly like my avatar.
Even with the fatigue, I've been able to keep working and keep up with the kids. Exercise has helped keep some nerve pain and anxiety at bay. My teenaged kids are responding to my energy level, and, when I am having a bad day, they pile around me for a good movie while I rest. When I am feeling well, we are on the move.
All and all - despite a stage III diagnosis of an incurable cancer - I've decided to live as though I am going to live, and to see what happens next.
I am on my fourth cycle of Cytoxan, dex and Velcade. For the most part, the therapy has been manageable. I do experience a migraine on the first day, and nausea for the first 48-72 hours. I can usually get by with my anti-nausea meds and a good nap or an OTC headache treatment. I am noticeably fatigued at times, but as you know, that could be a number of things. My infusion nurses are great about monitoring my numbers and requesting transfusions when the need arises.
My skin is dryer than normal, and I have been keeping my scalp oiled in hopes of not having dry brittle hair. I am African American -- my hair is usually thick and curly -- and I didn't notice any thinning. In fact, my hair grew, and I needed a new cut. I do have a "stress spot" at the top of my head that always thins when I am stressed. It's been that way since college, so I can't attribute that to myeloma or the medications. I kept checking that spot, so I just went to my stylist and had my hair cut so that the "stress spot" is no longer noticeable. One less thing to worry about. I now look exactly like my avatar.
Even with the fatigue, I've been able to keep working and keep up with the kids. Exercise has helped keep some nerve pain and anxiety at bay. My teenaged kids are responding to my energy level, and, when I am having a bad day, they pile around me for a good movie while I rest. When I am feeling well, we are on the move.
All and all - despite a stage III diagnosis of an incurable cancer - I've decided to live as though I am going to live, and to see what happens next.
-
Dana5 - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 45
Re: Oral Cytoxan (cyclophosphamide) side effects
Love your attitude Dana!
Thanks so much for posting the follow up with information about how you're doing. The kind of information you've provided is really helpful.
I hope your treatment continues to go well and that you get great results.
Thanks so much for posting the follow up with information about how you're doing. The kind of information you've provided is really helpful.
I hope your treatment continues to go well and that you get great results.
Re: Oral Cytoxan (cyclophosphamide) side effects
We are taking oral cytoxan as part of CyBorD. The only side effect we get from this combo is hiccups and a little nausea.
Re: Oral Cytoxan (cyclophosphamide) side effects
Thank you all for posting.
I will be starting the CyBorD regimen soon and still have not told my children. My mother-in-law "advised" me not to tell them unless necessary.
Will I be able to "hide" my treatment?
Nausea is my biggest concern, but I have been given meds to control that.
All the best to everyone!
I will be starting the CyBorD regimen soon and still have not told my children. My mother-in-law "advised" me not to tell them unless necessary.
Will I be able to "hide" my treatment?
Nausea is my biggest concern, but I have been given meds to control that.
All the best to everyone!
-
gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
12 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects