mood and cll

[Gardengirl44]

Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow biopsy (at least for now... it's been my third). I was trying so hard to focus and just "get it done," yet now I find myself emotional. I am getting off of the pills next week, which is amazing, yet now I am uncomfortable. Please share your experience of MRD and easing in. BTW, the BMB sucked as usual. She was fantastic but still major suckage.

[Pacificview]

Hi.....What do you mean when you say that you are uncomfortable?Congrats on getting through the trial and all that goes with that!

I am 3 months in with my #7 infusion thursday. I am wishing I was done now!

I am on the O and V.

John

[Gardengirl44 in reply to Pacificview]

the pills in some way are like a security blanket! 3 months is something to celebrate!!!!! It will go fast. Keep your eye on the prize. You got this.

[Pacificview in reply to Gardengirl44]

I could see that. I am not enjoying the side effects so I won't be grieving when I stop taking them.I will be celebrating what they have accomplished. I wait with eager anticipation.

I hope you grieve quickly and enjoy your very very long treatment holiday!!!!!!

All the best to you!

John

[Livingwith67 in reply to Pacificview]

me too John, I’m looking forward to the end of treatment already, starting cycle 4 on Thursday. Good luck with your o&v

[Pacificview in reply to Livingwith67]

Is your 7th infusion thursday? I started March 23rd, so it appears we are similar with start dates, or very close.

[Livingwith67 in reply to Pacificview]

yes it is number 7 on Thursday or 6 (depending if you count week one as 1 or 2) I started beginning of march but had two weeks where they were delayed due to bank holidays. Will keep you in my mind every time I’m in now, knowing there’s a fellow traveller along my journey.

[Pacificview in reply to Livingwith67]

You will be on #7 tomorrow with two left. How have your side effects been for you?

[Livingwith67 in reply to Pacificview]

first month or so was tough, very low blood pressure, 2nd month much better, recently quite fatigued. Bloods doing great. Weight gain since ventoclax. How about you?

[Pacificview in reply to Livingwith67]

Side effects from Obinituzumab were no fun for the first month. Flu like symptoms would last till a day or two before next infusion. Body aches, weakness, nausea, headache, could not drink enough water to make my body happy, constipation and quite misserable. First month was the worst. Sometimes the day before the infusion I would thinking. How can I do this again when I feel so bad.Over the last couple months my bodys after infusion reaction continues to lessen...thank God.

I asked to reduce the steroid and last month was the first time trying that. I thought it might help me recover from the ill feelings faster. But it just changed the reaction slightly. I then had to take zertec for a couple days and that helped. As I had a histamine reaction that there apparently was not enough steroid to overcome.

Overall the last 3 months I pretty much have felt a malaise, not myself and weak, alittle short of breath at times, alittle chilled here and there. What I call a fever at times without a fever...meaning just feels like a fever, but it does not register.

Ramp up with venetoclax did not add to my malaise feelings. But when I went from 200mg to 400mg. I really noticed an increase in bone and muscle pain, indigestion, heart burn, constipation which has been a real pain in the ass..

Last few days my body appears to be gotting use to the 400mg Venetoclax daily. I switched to taking it 45 minutes after I eat dinner. That seems to work way better.

I think I am now past the worst of my body getting use to this regimen. I thought it would take a lot less time to do so. But I am thankful to have it for the results it will produce.

Going into tomorrows 7th infusion my Neutrophils have been in decline. Ever since the Ven ramp up to 400mg. Today they came in at 1.0 which is the lowest of the constant downtrend. It was a tossup to go ahead and get #7 infusion. I said I am good, lets do it.

It would appear neutrophil booster is coming soon based on my ANC trend.

Which is fine, I expected it. As so many others here have had two or three to get through this O and V regimen.

All set for #7 manana.

I was pretty detailed here for the benefit of others either in this regimen or soon to join us.

So many have breezed through, but some don't. Its all good to relate to.

The treatment has been very effective. My bloods are all good except for ALC and ANC. PLTS were averaging 170ish and dipped to 100 on that ven 400mg. Today over the last month they are in a recovery trend at 134.

Thats my story on how its gone...

John

[Gardengirl44 in reply to Livingwith67]

I had weight gain too. They say no connection but I will soon see if anything drops.

[Livingwith67 in reply to Gardengirl44]

I’ve seen many mention this, we are not alone! Considering I’ve always maintained my weight pretty well and I’ve done nothing different. All I can think is that the healthier body is absorbing more of the nutrients now, if it’s not the tablets as the consultants say. I look forward to your bodies response to this now you are finished the tablets.

I also wish you well as you navigate through your new pathway.

And Well done on completing the treatment.

[Shedman]

It doesn't apply to everyone, there are exceptions, and there are well studied reasons for this..

..but cancer diagnosis and treatment, especially serious moments like my bilateral PE prior to first treatment, are a psychological trauma..

If we suffer trauma, at some time we have to process that trauma, ,come to terms with it; eg. adjustments required due to immune incompetence or treatment outcomes, and all changes in our self image, our future plans, our sense of our own timeline and mortality.. possibly with echoes from our prior experiences of cancer and ill health in those we love or lose.

My experience suggests that prior trauma may also surface after treatment ends, when we have time to reflect, a cessation of coping and just 'getting it done' -- the trauma(s) we may never have got around to processing, or that we coped by process of varied suppression.. My old childhood trauma surfaced like a 12-headed beast awoken after decades of slumber. Processing all of that put paid to having a clear head or useful short term memory for period of 2 years and more.

Leaving hospital after my last treatment ended all those months of regular focused care from so many nurses, doctors and pharmacists: what now? Teamwork over (outside of regular medical tests/appointments of haematology team), all on my own.. eek.

Add to this, that we most often have low blood counts / depressed immune health during or after treatment -- increased risk of infection, so need a protected (boring?!) period of life, away from too many people, their coughs, colds and.. COVID.

Yes, I think you are normal to feel this unease coming to the end of treatment. Time is now to reflect and process the turn of events and how you feel / what they mean in your life, to take stock of your plans.

It can also be time to discover whom is your trusted friend and confident, your wise counsel, as you come to terms with new beginnings and/or changes to your health and prospects, and/or to find that help.

Some here have reported it being a time to restart dating after their poor health interval.

One day at a time? Celebrate all success of the treatment, the advances in treatment options.. take your time with recovery, with finding your new comfy routine and making sense of things.

[Ghounds in reply to Shedman]

You write so well about your experience, thank you. I've been feeling something similar although still on w and w. Major adjustments in progress I think.....it's definitely not an easy or comfortable process.

[Gardengirl44 in reply to Shedman]

Thanks so much for your insight. Interesting about the trauma. I am sure there is some of that. For me it's all about control and as you know, with CLL there isn't much of that. Be well too!!!

[Shedman in reply to Gardengirl44]

I suspect that a lot of trauma relates to a loss of control..

Certainly, a chronic health condition and all the sequelae and adjustments require processing and re-evaluation, which takes time, is not linear.

🙏

[CoachVera55 in reply to Shedman]

Beautifully Said👏🏾👏🏾👏🏾

[Poodle2]

Hey gardengirl, I stopped taking V last week. I cried and it was a mixture of relief, happiness and anxiety at the same time. You know your numbers are looking good and it's thanks to the drugs so it's no surprise that it makes one feel anxious. It's nice not to have to think about the drugs anymore although I'm still on my prophylactic antibiotics and also my GCSF injections. My next check up is a month after my last dose. I will be super anxious to see the numbers.

All the best to you.

Petra ❤️

[SofiaDeo]

I was always good in a crisis, then when the critical part was over, fall apart. All of a sudden we no longer have this intense focus, it's disorienting when the crisis is over.

[Gardengirl44 in reply to SofiaDeo]

Exactly!

[Freedom202]

I stopped V about 3 weeks ago and I had a mix of emotions. Like you I felt like a warrior during treatment. Determined to get through it despite several admissions to hospital and a desire to succeed. Now it’s over I’m glad not to have all the tablets, blood tests and hospital appointment but I feel vulnerable without my tablets keeping things at bay. Like everyone says it’s normal and I’m sure this feeling will pass and I’ll feel more confident in my body without V.

[pati23]

Hi Gardengirl44

i have been feeling the same ,in the last few months. I have only 2/3 seeks of V left. i found when I was in busy mode with the infusions/transport, and all the blood tests, I felt in control, and active, in my treatment.

However, i was thinking some weeks after Christmas, "where do i go from here." Its a dilemma, on how to use and celebrate my treatment, and do things ,i have been missing, like holidays, and my hobbies/interests.

I`m 71, so its celebrating but taking account of age, family expectations, and even friends, who some have found it difficult with me and masks, and declining invitations, etc.

I decided to start councelling, returning to the counsellor i was kindly funded for by Leukaemia Care.

I feel tearful writing this, its expensive, but i have found it very helpful..All I could think is--- where do i go from here---, well i am clearing out lots of issues form my childhood, giving up work early due to my previous health issues.

balancing my commitments to older grown up men! who are my children!! and realising, i cant continue to be superwoman.

And its time for me, when I`ve always felt I wasn`t worth it.

this applies to everyone..

Im not very active on here but have found it very helpful to gain so much info, and different perspectives on this irritating ..... illness.

I would reccomend finding a counsellor, you gel with to iron out,

Where Do I Go From Here...

there can be funding from various charities..

Hope this is helpful.

I cannot wait, to have that last Venetoclax tablet,

Best wishes to all

Pat

[Phil4-13 in reply to pati23]

pati23, you said it all beautifully. You DO need to take care of you first and not feel guilty about it. This forum IS encouraging and informative. I do have low times and even tears on occasion. I simply sit alone and let them flow. But, those times are shorter and fewer. Yes, counseling does help. I'm inspired by you. Thank you! 🙂 Sandra(74 yrs, W&W in 4th year)

[Shedman in reply to pati23]

Yes to most all of this and gently and beautifully said..

[Gardengirl44 in reply to pati23]

You are the best!! thanks for these words.

[Miu48]

I was just contemplating posting something on this exact thing. I finished O September ish and V in May this year. Still on prophylactic pills.

When in treatment and being seen regularly by specialists, I felt safe and just got on with the treatment and regular bloods.

Fast forward to post treatment and I find myself anxious about my health. I should be happy and out there enjoying life. Instead I find myself worrying about getting infections, worrying that my bloods could go bad again. I think it is the loss of the security blanket that we hold onto so tightly during treatment.

I have my third BMB scheduled for mid July. I hate having them. They don’t hurt I know, they’re just deeply unpleasant.

I think the feelings and thoughts you are having are not uncommon. You’re not alone ❤️

[Gardengirl44 in reply to Miu48]

Feels better not feeling alone in this. You are so close now. My 3rd BMD was more than uncomfortable but I clearly hate them with a passion. However I loved the results this time round. woo hoo.

[Miu48 in reply to Gardengirl44]

❤️

[Smakwater]

Gardeninggirl44,

I confess how inspired I am by the selflessness of many who face cancer challenges . I have met so many afflicted patients who provide joy and hope to other patients, advocates, doctors, caregivers and the the families.

It is unfair to even begin to tell a story of such an inspiration because everyone of the blessings that I have experienced are equally uplifting.

One such time, I was in the waiting room full of people just before going into have an infusion, and I met a woman who was an experienced musical drama artist that performed regularly at a popular playhouse. She too was a patient and I learned that her treatment was was not going so well. During our conversation she seeing that I was masking the anticipation of the infusion unpleasantries, she pleasured me with a glorious impromptu song. She permeated my soul with this beautiful song while looking directly into my eyes from only four feet away. When she finished singing, she told me that she had just produced the song from her heart at that time for me. At that moment, I was called into the infusion room and never saw her again.

I am still so overwhelmed that I do not remember a word, yet I feel compelled to risk rejection humiliation that someone else might know the healing of the same uplifting spirit.

We can all be thankful that HealthUnlocked produces a great platform for inspired offerings and opportunities such as you provided with this post Gardengirl44!

JM

[Gardengirl44 in reply to Smakwater]

You are my person! Love this so much. I am printing this so I can read it often. When I was in the peak of my illness I would sew pillows and give them out randomly. I did that for me selfishly - it made me feel warm and in control. Giving back is certainly that way. I got chills when you said she looked right into your eyes. Powerful and so kind.

[Smakwater in reply to Gardengirl44]

You are not selfish for doing something good to give yourself a good feeling. The world needs more of that kind of doing!

[DoriZett]

garden girl I completely understand. I’m proud of us for pushing through and just getting things done. And I think that - when we’re in crisis mode - our intellect and will to survive just takes over and pushes aside all of the emotional baggage. But when the crisis is past - our bodies need to process what we’ve been through. Hang in there, good job!

I have SLL/CLL so I’m only in partial remission (extremely enlarged lymph nodes may never go back to normal size qualifying us for full remission measurements) and was treated with a single BTK inhibitor, so we do not reach U-MRD. But it’s just some thing I’ve had to process and live with. Onward, my friend!

[Gardengirl44 in reply to DoriZett]

I will pray for you and am glad you are feeling better. There is always someone worse off. Happy healing to you.

[Big_Dee]

Hello Gardengirl44

I am going to celebrate when I finish V pills in November. 🥂

[scryer99]

Completely get it. I am not near remission yet but have proceeded to the steady-state stage of treatment and am going through a similar thought process.

I found reading up on cancer survivors helpful; there are some pretty good resources that explain the emotional / psychological landscape at that point.

For me, when in the most intensive portions of treatment, I had permission in my own head to prioritize my own health above other things. You develop a sort of tunnel vision. It's not that I didn't do other things. I maintained some work presence, got things done around the house, supported my family, was social where I could do so within treatment constraints. But health unequivocally came first, and all those around me were on board with that.

Now that I'm in a less intensive phase, it feels like I have the worst of both worlds. I'm still in cancer treatment, still have immunocompromise, and still don't feel 100%. But now all the "everyday" issues are back... work in particular in my case. I no longer can ignore those things to a great extent. So it's a big new mental load.

I have found it helpful to focus on the "path to recovery" vs. "I'm done, yippee!" Because even for those of us who get all the way to uMRD, it's not like it's all over. We still need to recover strength, reestablish normal routines, work out a mental framework for "I had CLL and I'm likely going to have it again someday", and figure out the right balance between immunocompromise and living life.

That path has many steps, and slow walking at pace is the best way to get there. Small steps, consistently, most days, and pace. Those will see us through.

I have a fellow cancer patient neighbor who is a little ahead of me on recovery, but she has expressed similar sentiment. You think recovery is easy, until you are faced with it. It's not. That's OK.

[Gardengirl44 in reply to scryer99]

Path to recovery! I love that. I think that will be a useful tool for me. Thank you for being so kind.

[Thundercat2]

I remember in February this year when I was taking my last Venetoclax pill and feeling the same as you. I had been fighting a nasty sinus infection and wondering if it would ever go away and if things would be ok after finishing treatment. It was unsettling.

But suddenly the weather warmed up and I was told I was MRD- and I thought well...the heck with it! I'm going to live like I'm 100%! Why let fear and anxiety run my life?? We work hard during treatment and deserve to enjoy the results!

Now and then I still get a twinge of an anxious thought but I try to remember that it doesn't help to think about it and I get busy doing something else and distract myself from dwelling on it. Sometime down the road I imagine I may need to address another issue, but like Arya says on Game of Thrones : Not today!

[Gardengirl44]

Yes Yes Arya! Not today! I will remember that for sure.