Here I go again. Xelox this time

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taraHK
taraHK Member Posts: 1,952 Member
edited March 2014 in Colorectal Cancer #1
Well, I am soon to start chemo again -- for the 4th time! I have mixed emotions -- on the one hand 'yuck'. But on the other hand, I am glad there is something I can be doing actively to reduce the chance of recurrence or at least postpone recurrence.

My situation is a little unusual (I think - altho I am aware of a few others in similar situations). I was diagnosed with Stage III rectal cancer in Dec 2002. I had routine treatment for that (presurgical chemoradition, surgery, chemo). I have had 3 recurrences since. All three times, a solitary lung nodule, removed surgically. Both times previously followed by 6 mos chemo (FOLFOX the first time, FOLFOX plus Avastin the second time). The recurrences are every 18-24 mos. I'm grateful for the slow growing pattern.

Chemo after successful surgery for a solitary lung nodule is controversial. I'm aware of at least one other on this board who has not had that. Initially after this last surgery my oncologist thought no chemo but he/we have now changed our minds. I can't take Erbutix because I have the KRAS mutation. So, I will be doing Xelox (Xeloda plus oxaliplatin). When I was doing FOLFOX, I had to be hospitalized for the 48 hr drip (which turned out to be 2.5-3 days). I am very grateful not to be having the hospitalization this time.

I am already familiar with the side effects of oxaliplatin (!) but grateful for any advice on comon/likely side efffects of xeloda -- especially for those who have had both fofox and xelox.

The plan is for 6 cycles, every 3 weeks.

Thanks and best wishes.
Tara
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Comments

  • lfondots63
    lfondots63 Member Posts: 818 Member
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    Xelox
    Hi Tara,

    I had the oxiplatin but not the xeloda. I think I have heard on this board that it is the pill form of 5FU which if you did folfox that was the 2 day drip in the fanny pack. I'm sure others will chime in but lots of people here say it is easier then the 5FU on the body. Sorry you have to take the oxiplatin again. That is what gave me the neuropathy in my feet that hasn't gone away. HUGS and will be sending you good vibes.

    Lisa F
  • chynabear
    chynabear Member Posts: 481 Member
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    NED needs to quit leaving
    NED needs to quit leaving you!

    I'm praying for you. You are very brave and strong! You can beat this stupid disease into submission!

    Tricia
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
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    You can do it...
    Tara: The main effects I had with Xeloda is that my feet turned black. I'm not sure where you live, but if fall is on the way, you can take care of that with socks and some soothing foot baths. I am positive that you are tiring those pesky cancer cells and they will leave you alone once and for all. Monica
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
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    Big Hugs to you!
    Tara,

    I just want to wish you well on this next step in the parallel universe of cancer. I pray you take to it well. Please keep us posted on how it goes for you.

    Big, big hugs,

    Jennifer
  • usakat
    usakat Member Posts: 610 Member
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    I had XELOX
    Hi Tara!

    I did XELOX on the same program you will have. Gosh, you've been through so much and I'm so sorry you have to do the chemo thing again, but I'm glad, as you mentioned, that you do have the XELOX option.

    You will find XELOX is great...minimal side effects and with the Xeloda you'll have far more freedom than with the FOLFOX treatment...only one day in the infusion center and no take home chemo/fanny pack.

    The most common side effect with Xeloda is the hand/foot syndrome. Just keep your hands and feet well hydrated with a good moisturizer at all times and you can reduce the effects or avoid it all together. Spongebob gave me the Mary Kay Extra Emollient Night Cream, which was wonderful and smelled nice too...try it, you'll love it! If it gets bad, drop me note and I can offer more advice, but I'm hoping you won't have to struggle with any side effects at all.

    You've already had Oxaliplatin so you know about the tingly hands and feet, and cold sensitivity...take your Vitamin B-Complex and stay well hydrated. Tell you chemo nurse to go slow with the Oxaliplatin infusions and ask for Emend for nausea.

    You're a cancer warrior...you'll breeze right through this.

    Let me know how I can help if you need it :)

    Many blessings for good health, healing, comfort and happiness...

    Hugs,
    Katie
  • taraHK
    taraHK Member Posts: 1,952 Member
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    usakat said:

    I had XELOX
    Hi Tara!

    I did XELOX on the same program you will have. Gosh, you've been through so much and I'm so sorry you have to do the chemo thing again, but I'm glad, as you mentioned, that you do have the XELOX option.

    You will find XELOX is great...minimal side effects and with the Xeloda you'll have far more freedom than with the FOLFOX treatment...only one day in the infusion center and no take home chemo/fanny pack.

    The most common side effect with Xeloda is the hand/foot syndrome. Just keep your hands and feet well hydrated with a good moisturizer at all times and you can reduce the effects or avoid it all together. Spongebob gave me the Mary Kay Extra Emollient Night Cream, which was wonderful and smelled nice too...try it, you'll love it! If it gets bad, drop me note and I can offer more advice, but I'm hoping you won't have to struggle with any side effects at all.

    You've already had Oxaliplatin so you know about the tingly hands and feet, and cold sensitivity...take your Vitamin B-Complex and stay well hydrated. Tell you chemo nurse to go slow with the Oxaliplatin infusions and ask for Emend for nausea.

    You're a cancer warrior...you'll breeze right through this.

    Let me know how I can help if you need it :)

    Many blessings for good health, healing, comfort and happiness...

    Hugs,
    Katie

    thanks
    Thanks for these replies. When I was on FOLFOX, I had to be hospitalized for 2-3 days (no fanny pack for me). So I am REALLY looking forward to skipping that! I will look out for the foot problems -- thanks for the suggestions. I am NED now -- but I am looking for a "long term relationship", rather than short-term dating! ha ha.

    Thanks again for the advice and good wishes. It means the world to me.

    Tara
  • Kanort
    Kanort Member Posts: 1,272 Member
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    Well Wishes!
    Hi Tara,

    I am so sorry you are having to deal with chemo again, but like you, am grateful you have the opportunity to reduce the risk of recurrence with the Xelox regimen. I don't have any experience with Xeloda, but it sounds like you have tolerated oxaliplatin well in the past. I know you will enjoy being able to not be hospitalized this time around.

    Please know we will be thinking of you as you wipe out any and all of those pesty cancer cells forever!!!!

    Hugs,

    Kay
  • jsabol
    jsabol Member Posts: 1,145 Member
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    Thinking of you
    Tara, I have no info to add, but wanted you to know that you will be in my thoughts and prayers; you are truly a cancer warrrior; time to make NED a permanant part of your future. All the best, Judy
  • joj56
    joj56 Member Posts: 13
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    taraHK said:

    thanks
    Thanks for these replies. When I was on FOLFOX, I had to be hospitalized for 2-3 days (no fanny pack for me). So I am REALLY looking forward to skipping that! I will look out for the foot problems -- thanks for the suggestions. I am NED now -- but I am looking for a "long term relationship", rather than short-term dating! ha ha.

    Thanks again for the advice and good wishes. It means the world to me.

    Tara

    Hi Tara
    I am newly diagnosed so this may seem like a stupid question. In your previous post you said you are currently NED- but you are doing chemo again. Is that common? Can you tell me more about that.
    I had surgery and the drs. said they removed all they could see, but I had many nodes positive so I figured that is why I have to start chemo (two weeks probably).
    I am glad to hear you have tolerated your treatment fairly well. I am confident you will handle the xeloda well also.
    I will keep you in my thoughts and prayers.
    Peace
    Jeri
  • pamness
    pamness Member Posts: 524 Member
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    Hi Tara - best wishes
    I was diagnosed stage 3A - but my last CEA was higher than my norm - 4.5 (I am usually between 2.2 and 3.2), so my next news, might be similar to yours. I also think that your chemo plan might be in my future.

    I hope you do really well, and this is your last time.

    Pam
  • Moesimo
    Moesimo Member Posts: 1,072 Member
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    Sending HUGS!!!!
    Tara,

    I cannot even imagine what you are going through. I am sending hugs and prayers to you. I am also sending NED to land on you for good. You are my hero and I wish you all the best as you begin treatment again.

    PS How are your boys, Has your oldest son started college?

    Please keep us posted.

    Maureen
  • taraHK
    taraHK Member Posts: 1,952 Member
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    joj56 said:

    Hi Tara
    I am newly diagnosed so this may seem like a stupid question. In your previous post you said you are currently NED- but you are doing chemo again. Is that common? Can you tell me more about that.
    I had surgery and the drs. said they removed all they could see, but I had many nodes positive so I figured that is why I have to start chemo (two weeks probably).
    I am glad to hear you have tolerated your treatment fairly well. I am confident you will handle the xeloda well also.
    I will keep you in my thoughts and prayers.
    Peace
    Jeri

    good question
    Hi Jeri

    Not a stupid question at all -- there is no such thing! Sometimes after surgery -- when all visible cancer has been removed -- chemotherapy is recommended. The thinking seems to be that the chemo drugs may be able to wipe out any remaining 'invisible' cancer cells (micrometasteses). If you have positive lymph nodes, the fear is that some cells may have escaped the tumour and be lurking out there (although this is certainly not necessarily the case -- the surgery could very well have removed all cancer from your body). In my case, since I have had a couple of recurrences, there is fear that there may still be more out there, so that is why have I am having the chemo -- even tho no-one can "see" any cancer. I am sending loving thoughts and prayers your way, as you start your chemo journey -- Hope it goes really well for you.

    Tara
  • taraHK
    taraHK Member Posts: 1,952 Member
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    Moesimo said:

    Sending HUGS!!!!
    Tara,

    I cannot even imagine what you are going through. I am sending hugs and prayers to you. I am also sending NED to land on you for good. You are my hero and I wish you all the best as you begin treatment again.

    PS How are your boys, Has your oldest son started college?

    Please keep us posted.

    Maureen

    Thanks!
    Thanks, Maureen. You are my hero, too, as you know! Thanks for asking about the boys. My eldest finished high school and got accepted to college but is taking a 'gap year' (ie deferred admission) -- to travel and do volunteer work. I am so happy to have celebrated his hs graduation -- he was just 12 when I was diagnosed - yea! Thanks for your loving words of support. I will get thro this next stage.....

    Tara
  • hopefulone
    hopefulone Member Posts: 1,043 Member
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    Best of Luck
    Tara, wishing youo success with the Xelox. My husband did well with it. He was fortunate and did not suffer many side effects with the Xeloda . Be sure to use a rich emmolient cream on hands and feet. It helps . God Bless,
    Diane
  • Melanie781
    Melanie781 Member Posts: 33
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    My husband is currently on the Xeloda and Oxaliplatin regime
    Hi Tara,
    My husband is currently on his 4th round of 6 to 8 total rounds of chemo, three week cycles of chemo: Xeloda 2 weeks on and 1 week off, with Oxaliplatin infusion at the beginning of each cycle. The 3rd round "kicked his butt" so we were very scared about what the next round would do. It seems he is doing better this time (last infusion was last Friday.) The only bad side-effect this time around is blurred and double-vision. (A little history: he was dia. StageIIIC rectal last Christmas; chemo/radiation, surgery, now adjuvant chemo because of all the lymph-node involvement.) His WBC was only 2.5, but the onc feels very strongly that my husband needs to finish at least 6 rounds. But, all in all, he is tolerating the treatment pretty well.
    Hugs,
    ~Melanie

    P.S. I am very happy to see that you were diagnosed in 2002 and are still fighting this...it gives me strength to believe that my husband can beat this and be around for many years to come.
  • bonzonie
    bonzonie Member Posts: 5
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    My husband is currently on the Xeloda and Oxaliplatin regime
    Hi Tara,
    My husband is currently on his 4th round of 6 to 8 total rounds of chemo, three week cycles of chemo: Xeloda 2 weeks on and 1 week off, with Oxaliplatin infusion at the beginning of each cycle. The 3rd round "kicked his butt" so we were very scared about what the next round would do. It seems he is doing better this time (last infusion was last Friday.) The only bad side-effect this time around is blurred and double-vision. (A little history: he was dia. StageIIIC rectal last Christmas; chemo/radiation, surgery, now adjuvant chemo because of all the lymph-node involvement.) His WBC was only 2.5, but the onc feels very strongly that my husband needs to finish at least 6 rounds. But, all in all, he is tolerating the treatment pretty well.
    Hugs,
    ~Melanie

    P.S. I am very happy to see that you were diagnosed in 2002 and are still fighting this...it gives me strength to believe that my husband can beat this and be around for many years to come.

    XELOX Side Effects
    Hi Melanie,

    My husband is on same regime as your husband, XELOX, 21 day cycle but is to have a total of 12 cycles. His schedule is just a few days behind your husband's. He will have his 4th infusion, day 1 of his 4th 3 week cycle, next Monday. Round 3 certainly kicked his butt too and we have the same worries about Round 4. His history is a bit different, Stage IV at diagnosis first of May, simultaneous hemicolectomy and liver resection of 1 of 2 liver mets and radio frequency ablation of the other liver met the first of June then began chemo (Xelox) July 7.

    I noticed that it seems that when he experienced neuropathic symptoms or pain, that we were told to expect, that his nausea seemed to get worse. Just out of curiosity did you guys have any kind of similar experience?

    He had a rough round 1. Arm pain led to a bone scan that turned out negative and then thought to be Xeloda dose related did improve after a dose reduction, but didn't resolve permantely. It repeated at about the same time in the cycle rounds 2 and 3 but to a far lesser degree and only for a few minutes once or twice. Also we did not have very good contol of his nausea until just a couple of days before his rest week.

    Rounds 2 and 3 the typical cold sensitivity, tingling a pain in fingers, toes and lips was worse and lasted longer than round 1. This is when I noticed his nausea, at least from observation, is related at some level to his level of neuropathy.

    I hope I haven't rambled too much. I just think that if we could better control his neuropathy we could get better control over the nausea and ultimately get through as many cycles as possible, hopefully all 12.

    My best to you and your husband.

    Bonnie

    Every small battle won is one step closer to winning the war!
  • Melanie781
    Melanie781 Member Posts: 33
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    bonzonie said:

    XELOX Side Effects
    Hi Melanie,

    My husband is on same regime as your husband, XELOX, 21 day cycle but is to have a total of 12 cycles. His schedule is just a few days behind your husband's. He will have his 4th infusion, day 1 of his 4th 3 week cycle, next Monday. Round 3 certainly kicked his butt too and we have the same worries about Round 4. His history is a bit different, Stage IV at diagnosis first of May, simultaneous hemicolectomy and liver resection of 1 of 2 liver mets and radio frequency ablation of the other liver met the first of June then began chemo (Xelox) July 7.

    I noticed that it seems that when he experienced neuropathic symptoms or pain, that we were told to expect, that his nausea seemed to get worse. Just out of curiosity did you guys have any kind of similar experience?

    He had a rough round 1. Arm pain led to a bone scan that turned out negative and then thought to be Xeloda dose related did improve after a dose reduction, but didn't resolve permantely. It repeated at about the same time in the cycle rounds 2 and 3 but to a far lesser degree and only for a few minutes once or twice. Also we did not have very good contol of his nausea until just a couple of days before his rest week.

    Rounds 2 and 3 the typical cold sensitivity, tingling a pain in fingers, toes and lips was worse and lasted longer than round 1. This is when I noticed his nausea, at least from observation, is related at some level to his level of neuropathy.

    I hope I haven't rambled too much. I just think that if we could better control his neuropathy we could get better control over the nausea and ultimately get through as many cycles as possible, hopefully all 12.

    My best to you and your husband.

    Bonnie

    Every small battle won is one step closer to winning the war!

    Xelox treatment
    Hi Bonnie,
    Thanks for sharing your experiences. My guy has only complained of aches in his hands, but says his feet are fine. The nausea was pretty bad for each round, but is more controlled this time. He was given 2 types of medication to take and once I reminded him to take it, he felt better. (He was hesitant to take medicine to alleviate his symptoms until the last minute and I usually had to remind (nag) him.)

    My husband is familiar with taking Xeloda. It is what he took prior to the surgery, along with radiation doses, for 25 treatments (only on weekdays.) He tolerated it very well and really didn't have any side effects that we can definitely attribute to the Xeloda. The radiation is what caused a lot of pain for him (for obvious reasons.) He also had a lot of diahrrea, which can also be attributed to the radiation and the Xeloda. Additionally, the amount of medication was the same and the amount he is taking each day for the adjuvant chemo.

    At the beginning of round 2, he had a severe headache later that night and had severe diahrrea, so the onc prescribed 6 hours of IV fluids, which prevented him from becoming dehydrated. Round #3 was particularly bad because he felt very sick and didn't get up very much for a week and a half. He thought he had an intestinal blockage, but the onc saw him and determined that wasn't so. The onc did change his pattern of receiving the 3 week regime. He now has the infusion on day 1 and then starts the 14 days of Xeloda the day after. He mainly complains about his eyes feeling very dry and occasional double vision and, of course, nausea, but takes the proscribed meds without my nagging. Today, so that we are better prepared at our next onc appt (which we have the day before each round,) I finally sat down with him and started a journal for him regarding his symptoms. I want to be able to report details at our next onc appt. I read in several places that is was a good idea to have one. He won't do it himself, so I finally am doing it for him.

    Well, I almost forgot to address the cold-tolerance; he has the sensitivity we were warned about, but is doing well at avoiding cold things. We even bundled him up and covered his face for going outside and enjoying a 4th of July celebration, eventhough it wasn't very cold. Mostly, the tingling recedes after about 3-4 days and he doesn't have to beware so much of the cold. Also, he uses an oven mitt to take things out of the fridge and then lets it sit until its not as cold (he can't stand warm water, etc., which makes drinking enough liquids pretty tricky.) He does try to drink a lot of warm tea, though.

    Here's to tolerating the complete recommended rounds! I wish you guys the best and hope we all of terrific results. :0)

    ~Melanie
  • crazylady
    crazylady Member Posts: 543 Member
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    sorry you have to do chemo again
    Hi Tara,

    I believe our situations are similar. I am currently on xeloda, camptosar and avastin. I think this is round 5 for me. I've gotten to the point where I'm not really keeping track anymore.

    I have previously been on folfox and xeloda by itself. This is the 2nd time I've tried the current cocktail. My experience with xeloda side effects have been hand and foot syndrome. When I was on xeloda alone I had a problem with ingrown toenails which required several trips to the podiatrist. Xeloda, in my opinion, is a fairly easy drug to deal with. It definately beats being hooked up to the pump for 48 hours. I really hated oxaliplatin and was happy when I finally had an allergic reaction to it after many treatments.

    I'm really sorry that you have to do chemo again. I know how it feels. I'm sitting here with my hair falling out everywhere from the camptosar. My 16 year old daughter informed me that the back of my shirt resembled a small hairy animal today. Good thing I have a sense of humor! lol She was 12 when I was diagnosed so I am just glad to be here and doing fairly well at this point.

    Take care,
    Jamie
  • taraHK
    taraHK Member Posts: 1,952 Member
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    crazylady said:

    sorry you have to do chemo again
    Hi Tara,

    I believe our situations are similar. I am currently on xeloda, camptosar and avastin. I think this is round 5 for me. I've gotten to the point where I'm not really keeping track anymore.

    I have previously been on folfox and xeloda by itself. This is the 2nd time I've tried the current cocktail. My experience with xeloda side effects have been hand and foot syndrome. When I was on xeloda alone I had a problem with ingrown toenails which required several trips to the podiatrist. Xeloda, in my opinion, is a fairly easy drug to deal with. It definately beats being hooked up to the pump for 48 hours. I really hated oxaliplatin and was happy when I finally had an allergic reaction to it after many treatments.

    I'm really sorry that you have to do chemo again. I know how it feels. I'm sitting here with my hair falling out everywhere from the camptosar. My 16 year old daughter informed me that the back of my shirt resembled a small hairy animal today. Good thing I have a sense of humor! lol She was 12 when I was diagnosed so I am just glad to be here and doing fairly well at this point.

    Take care,
    Jamie

    oh those side effects
    Hi Jamie,

    Sorry about the hair loss. The sort of thing which shouldn't bother us but really does! I have only had hair thinning so far (on 5FU and FOLFOX)-- but even that has been hard....Little things like chunks of my eyelashes missing (hard to get the mascara on!). I normally use an eyebrow pencil anyway but it became more challenging when I didn't have enough brows to even see where I was meant to be pencilling!

    Thanks for mentioning podiatrist. That is a good suggestion and I will definitely keep that in mind if/when I run into foot problems....

    I was on Avastin last time. I had no problems at all -- and didn't notice any specific side effects for it.

    I know what you mean about your daughter being 12 when you were diagnosed, and 16 now. Wow - 16! I'm the same. My boys were 10 and 12 when I was diagnosed. Now they are 15 and 17 - huge, gorgeous creatures. Whenever I feel low, I just remind myself that I have had the blessing of being around for the past 5 years -- through all the teenage craziness and everything. Makes it all worthwhile. I can keep doing this chemo stuff....

    Sending lots of love and good wishes your way....
    Tara
  • bonzonie
    bonzonie Member Posts: 5
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    crazylady said:

    sorry you have to do chemo again
    Hi Tara,

    I believe our situations are similar. I am currently on xeloda, camptosar and avastin. I think this is round 5 for me. I've gotten to the point where I'm not really keeping track anymore.

    I have previously been on folfox and xeloda by itself. This is the 2nd time I've tried the current cocktail. My experience with xeloda side effects have been hand and foot syndrome. When I was on xeloda alone I had a problem with ingrown toenails which required several trips to the podiatrist. Xeloda, in my opinion, is a fairly easy drug to deal with. It definately beats being hooked up to the pump for 48 hours. I really hated oxaliplatin and was happy when I finally had an allergic reaction to it after many treatments.

    I'm really sorry that you have to do chemo again. I know how it feels. I'm sitting here with my hair falling out everywhere from the camptosar. My 16 year old daughter informed me that the back of my shirt resembled a small hairy animal today. Good thing I have a sense of humor! lol She was 12 when I was diagnosed so I am just glad to be here and doing fairly well at this point.

    Take care,
    Jamie

    Hair here but not there.
    Hi Jamie,

    You mentioned losing hair. I'm not sure whether it is the oxaliplaitn or the Xeloda that is doing it but hubby's hair is definitely thinning. He got a very short haircut just before surgery so he could just use a wash cloth to freshen it up while in the hospital, which by the way worked well, but since he started chemo it is thinning. He said he is just going to get a buzz cut this week before his next cycle. What is interesting is that his stomach hair has come back so thick after being shaved for surgery that his scar is barely noticble. Good thing too because he loves to swim and obviously feels more comfortable about how he looks with his shirt off now. Unfortunately pool season is coming to a close and he will miss his almost daily swims when we close the pool next week.

    One thing I am wondering is did anyone here have to stop or hold off on chemo due to low white counts. His appear to be decreasing about the same rate/amount with each successive treatment. I hope it levels off and doesn't fall so far as to hold back treatment or put him at too much risk of infection. Especially with cold and flu season just around the corner.

    Good luck with your treatment!

    Bonnie