husband starting treatment

[Nanatoo4]

we have been on 3 1/2 years of WW and doctor finally says it’s time for treatment. He gets his medicine in the mail today. He will be starting IBRUTINIB. Any advice? What to expect? She feels he will do awesome on it. Kinda scary going to the nest level not gonna lie!!!❤️

[Phil4-13]

I’m in W&W and would also feel anxious, as you do, about beginning treatment. I am continuously reminded by this forum, that Ibrutinib is widely prescribed and gives good results. We are fortunate to have available so many Rx’s to treat CLL.The best to your husband and you. You know you can bring any concerns to this forum and receive answers and support. Sandra😊

[Nanatoo4 in reply to Phil4-13]

i haven’t wrote anything in a long time but i read a lot on here and feel the same way about it. One thing i have realized is wow medicine for treatment is mad crazy expensive! We are blessed with amazing insurance that covers it but one of the first things i thought was how do people afford this with limited or no insurance! Made me super sad.

[Phil4-13 in reply to Nanatoo4]

I’m told there are foundations that cover costs insurances won’t for CLL meds.7 years ago I had hepatitis C and a foundation covered costs beyond insurance coverage. For that I had to show a tax return to prove I was not a millionaire! By the way, I was cured!

Sandra “3”

[Nanatoo4 in reply to Phil4-13]

awesome that is good news to hear. and awesome you were cured. My husbands brother also had Hep C and was cured.

[wizzard166 in reply to Nanatoo4]

If you are in America and on Medicare, I can give you a very good detailed understanding of the costs you will experience. My work focuses on Medicare, although I help people under 65 too.

Carl

[rcusher]

Hi, I have been on Ibrutinib over 3 years now and with great results. I had some minor issues such as brittle nails, muscle cramps and various aches and pains, all which are very controllable. Drink plenty of water. I take mine every morning which is convenient for me, I started at night to sleep during any problems but had none. Other than that good luck.

[Nanatoo4 in reply to rcusher]

that is awesome! Yea she told him to drink 64 ounces of water a day. Did you see results of your blood work getting better right away? That has to make you feel awesome to see the counts get back in the normal range

[lankisterguy Volunteer]

Hi Nanatoo4,There are many postings & replies that may be helpful. Try starting with this one:

healthunlocked.com/cllsuppo...

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Then look on that page for the box labeled: Related Posts

*planning to start Imbruvica treatment healthunlocked.com/cllsuppo...

*Questions/Concerns about starting Imbruvica healthunlocked.com/cllsuppo...

*Starting Imbruvica today! healthunlocked.com/cllsuppo...

*NEW TO CLL AND IMBRUVICA. HAVE QUESTIONS healthunlocked.com/cllsuppo...

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And when you find an interesting discussion, then look for the Related Posts again, the contents will list other postings with similar titles. (hint: Your title did not include the word Ibrutinib or Imbruvica, but it did include starting and husband).

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Len

[Jacksc06]

Water water and more water, I take Biotin to help with brittle nails and hair. Hope all goes well.

[Kennethgt]

Hi. Been on Ibrutinib for 2 1/2 years now. It is extremely important to drink alot of water daily. I drink about 100 oz of water daily as told by my hematologist/oncologist. Watch for splitting nails and joint discomfort.

[Metal38]

I have been on it for 6 months. Like taking a vitamin in the morning. Zero side effects. Will be adding venetoclax off label in 2 weeks! The future of call medicine is here. He will be fine!

[wizzard166]

Hey Nanatoo

I'm exactly three years Watch and Wait, and I just had my six month visit with a Specialist I travel long distance to see in Boston. I got another reprieve with the decision to stay on W & W; although, she wasnt too happy with my jump of 68% in total White Count from the prior six month visit. I went from 34,000 to 57,000, and she did alert me that another spike like that could change our decision. But I get another six months before that next visit.

Imbrutinib (Brand Name Imbruvica) has been the method of choice for many of us with CLL; especially, if Chemo is too dangerous due to our age. It is the first Novel Targeted Theraputic, less dangerous than Chemo, and it targets a protein that the cancer cells use to grow from. By cutting off the ability of the Cancer cells to use that protein, it can stop the growth and end up with the illness receding.

I spoke with my Specialist in Boston about whether or not Imbruvica would be my drug of choice should I go off Watch and Wait, and she mentioned that the latest thing being tried is combining Imbrutinib with a second type of Novel Targeted Theraputic. Probably your specialist wants to see if your specific cell situation will respond to Imbrutinib alone, before trying to add to it. I gather the newer concept of combining a couple of these medications is still frequently in what they call Trials.

From reading what others on this site have posted, I gather that there are a group of potential side effects with any of these medications. Some people post about very little and others with more. I'm sure you will get a good amount of our group replying with what they have experienced, but overall I gather Imbrutinib has been quite successful.

Carl

[Nanatoo4 in reply to wizzard166]

yes this site is amazing. like you my husband has a huge jump 2 times in a row. He received it in the mail. he will start Friday!! we shall see. hopefully he has little to no side effects!!

[Ibru]

My husband has been on it 8 years and doing fine. Keep hands well moisturized as it did cause skin cracks on the tips of his fingers. Also, he had to play with what time of day to take the medicine. For him, it was best after dinner, but everyone is different.

[janvog]

Optimal diet and daily exercise will support the therapy. ( My favorite exercise music therapy on low volume "tropical 100 merengue" on the internet" - the sound of eternal pre-teenage optimism. It's most famous singer died from leukemia at 98. Two month after a grateful nation applauded him still singing: el merengue segun mateo .