New to this world of CLL

Hi everyone! I am 60 years old and was diagnosed with CLL on April 25th after many blood tests and a biopsy of the right axillary node. I am very active and adventurous... The last couple of years I had lost my zeal for life and was tired all the time. A lump had come up on the back of my neck.. I thought it was a muscle problem because I had a stiff neck for about a year and had gone through physical therapy with it.. About 3 months later a second lump appeared just under the 1st lump... neither one was painful.. I knew this was not a good sign.. That is what got me to go get it checked out. I was also have stomach and back pain...After a couple of CT scans, the doctor said nodes were reactive and swollen... That was what was causing the pain... I had my first FCR treatment May 4-5...Am getting ready for the 2nd round June 1-3. I got terribly sick after the 1st round... Was given Zofran during the treatments. I ended up in ER for fluids. With this next round, they are changing the nausea meds. I have a lot of family and friends support but am nervous and anxious about the future... I am Stage 1 Bulky. Just nervous about the chemo side effects... I am happy to have found this group😀 I have gotten a lot of good info from here. Hopefully I can be of help to someone. Take care!!

19 Replies

  • Hi and a warm welcome Jonidleo,

    It's been an emotional roller coaster of a time for you over a few short weeks so first of all well done for being able to post your experience here in the midst of your treatment. You certainly help others just by doing that!

    I think the first thing that jumped out at me was you having physio for the lump that really should have been investigated further. I hear so much of people being sent to physio for a variety of reasons without proper diagnostics being done first. But having been an active, adventurous person, this funny old CLL was probably the last thing on your mind. It catches so many of us by surprise.

    I'm sorry you've had to receive treatment so quickly after diagnosis but it does sound like the bulky nodes were starting to cause you problems. I really hope you don't experience nausea with the second round and that you can be given effective anti-emetics. Good to hear you have good support around you and I feel sure once you're well into treatment and good effects become obvious, you'll feel less anxious about the future.

    Sending you massive best wishes. I'm as yet untreated and coming up to my 4th year Cancerversary on Tuesday. It's been an eventful time made easier by the support of this group which we warmly welcome you to.


  • Thank you so much for your kind words and support!! This has been a whirlwind and caught all of us off guard but..really., who is ever prepared to hear those words ... You have cancer.. We may think we are because I had pretty much diagnosed myself (I do lots of research 😉), but when you actually here those words, it is unbelievable! I am so glad you have made it to 4 years without being treated!! Prayers that it continues! Take care my new CLL friend!

  • Hi and welcome to this site. I'm so sorry for all you are going through, but glad you're here now.

    My husband is the one with CLL, I'm the spouse who has found so much support through this site.

    I wish you well during your treatments! Sending positive thoughts your way!

  • Thank you so much!! My husband has learned a lot these past few weeks.. He has been by my side through all of this and he is usually not the sensitive type😉 His role has changed and so has mine....but we will get through this with a whole new outlook on things. Take care and God bless the caretakers!!!

  • Thanks! Dare I say that as a couple, this doagnosis had brought us even closer. On the upside, I caught myself nagging at him about toothpaste in the sink the other things are getting more back to normal, lol!

  • Hi Johnidleo. You seem to have handled things pretty well. Not easy times and so much to take in without overloading the brain. I'm fortunate to have had one year to come to terms with it and I've used that time to understand a little more about CLL.,Mostly from this wonderful forum.

    No advice (still watch and wait) but a big welcome. Keep us updated. Peggy

  • Thank you Peggy4! I will keep ya'll updated!

  • Hi Jonidleo,

    I am so very sorry you're going through this. I had that same lump on the back of my neck (since 1997) and thought it was a muscle issue for many years. Who knew I was in w&w?

    Once I ended up in chemo, I had many problems with nausea and side effects. Here's what I learned the hard way

    Zofran (aka ondansetron) works for about 8 hours.

    Kytril (aka granisetron) works for 24 hours

    Aloxi (aka palondansetron) works for 48 hours

    Emend (aka Aprepitant) works for 24 hours

    Notice that the first three antiemetics end in tron? That's because they are in the same family of drugs, so taking them simultaneously does not accomplish much.

    What finally helped me (on a two-day chemo treatment every 28 days) was:

    Kytril on day one

    Aloxi plus Emend on day two

    Extra hydration (saline) both days

    The other thing to know about nausea is the importance of staying ahead of it. You can also get ondansetron in a sublingual tablet that melts under your tongue. This can be especially helpful, since once you feel nausea coming on, drinking water to get a pill down is just going to precipitate vomiting.

    Hang in there. We are all with you!

  • Thank you so much for the info on nausea meds! I copied it and will take it with me next week... Just to compare to what I will be getting and to talk to my doctor about them. I don't want to get sick this time... It was miserable!!

  • No two cases will be identical, but it doesn't hurt to ask your oncologist about options. My best resource turned out to be my pharmacist. I told him about my problems and he was the one who explained how these drugs work and for how long. He was also the one who suggested Aprepitant, which turned out to be the magic combo.

    First time treatment is referred to as "treatment naive" and I found it to be true in every sense of the phrase. I just assumed my doctor was super human. It didn't occur to me that he was overly busy or that my reaction was unusual. So when cycles one and two were so terrible, I reached out elsewhere for help. And the oncologist was fine with my suggestions. (Although he kept saying that no one was having these problems.)

    One note of caution is that, if you up the antiemeditcs, it can increase the constipation and you may want to be more proactive there as well.

  • Welcome to you jondelio.

    I hope round 2 goes a bit easier for you. My only tip is to drink lots and lots of water every day. It does help.

    Best wishes.


  • Thank you!! I am trying really hard!! I am the world's worst drinker! I have to make myself.

  • Try as hard as you can. It flushes the kidneys and helps clear the body.


  • Welcome to this wonderful support

    Jonidleo ! You will find a wealth of experience and knowledge from this caring community. I have found it invaluable since my diagnosis 3 years ago. Still on W&W but treatment on the horizon

    Sorry that you had to start treatment so soon. Take care x

  • Here is a good guide for patients on nausea... hydration is vital... litres of water, and so is need to stay ahead of the nausea...

  • Thank you so much!!

  • Best wishes jonidleo!

    Recent CLL in WW. So happy you found this remarkable group of people! Many positive thoughts and wishes on your next round!

    Now on to having my hubby reevaluated for what the doctor diagnosed as a lipoma in his neck???!!! It has been several years but..... Thank you for your post to have me be proactive for him!

  • Good idea to have him re-evaluated! My doctor thought mine was a lipoma also because of the location... She referred me to have an ultrasound to rule out lymph nodes and it turned out to be lymph nodes...

  • Thanks you so much!!!

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