Bumps In The Road: WARNING: A LITTLE RAW AND... - CLL Support

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Bumps In The Road

Jmiah717 profile image
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WARNING: A LITTLE RAW AND MAYBE NEGATIVE...SKIP IF YOU'RE NOT IN A GOOD PLACE

I have been holding off on posting this update as I am still wrapping my head around all of it. Maybe writing it out will help. As some of you may remember, I started my treatment journey on October 10, 2022 after well over a decade of watch and wait. I was 41 when I started treatment. As you may remember, I had the first obin infusion on that day and tested positive for Covid that same night. This delayed dose number two and sent me home with a Paxlovid script. Then my cancer doc resigned and I was bounced to a new doc.

I managed to well with all of that and seemed to recover okay from Covid. I eventually got back on track and had my obin doses and Venetoclax ramp up go without much of an issue. That all tracked pretty well until around Christmas time. I kept getting little viral infections and seemed to be hanging onto something a little more significant in my sinuses. I got an antibiotic, which seemed to help with the sinuses but then a couple days after Christmas...boom fever of 103 F. Not fully understanding the implications of this, I slept that off and called my team the following day. They informed me of the importance to make sure I was not neutropenic and to go get a blood test. I went to an urgent care (US) and not only was I severely neutropenic, I tested positive for Covid again. It was not an old result as I had tested negative many times since the previous infection.

So, this led to hospitalization number one at a place that is 3 hours away from my cancer team but closer to my home. I was there being treated for a few days for the neutropenia and monitoring the Covid situation. I was sent home on New Year's Eve and went to see my treatment/trial team a couple of days later. At that visit, they were pleased that my neutrophils had hung on well over that time and seemed to be stabilizing. Nonetheless, they boosted them a bit with some Neupogen and asked that I restart my venetoclax which had been on hold since the neutropenia. I did this and the week went fairly well without any issues. No more fevers and I was seeming to get back on track.

I went the following Monday back for my obin infusion that was put off by one week due to my neutrophils being low and my Covid infection. On Tuesday I started to notice in the evening that I was getting sub-fever increased temps around 99 to 99.5 F. This went on for Wednesday as well and I was having some shortness of breath so my team agreed that I should head to urgent care again and just see where things stand. They did a blood test and I was not neutropenic this time but still testing positive for Covid...which makes sense. Thursday was more of the same with temps increasing to 100F at one point but never crossing the threshold of 100.4 that my team asked me to be aware of. Until Friday (3 days ago)...

I woke up with 99.9F on Friday and it really didn't go down. I felt sort of lousy and just felt really off. By about noon I was up to 100.8F and my decision of what to do had been made. It was off to the ER at my (sort of) local big university hospital (not my treatment team) to be looked at for an infectious disease/neutropenia workup. Sure enough, i was slightly neutropenic upon arrival and was admitted again. My counts continued to drop precipitously over the following 12 hours and were down in the severe range again pretty immediately. I went from feeling okay to terrible, back to okay, to good, as things seemed to bounce around.

They are doing the usual IV antibiotics, blood cultures, blood tests, and now neupogen shots since my counts went down. The venetoclax is also on hold again, of course. I am still here and I am writing this from my fun isolation covid hospital room. I have to wait for 48 hours with no fever and increased neutrophil counts before being discharged. They are doing some relatively unconventional things to try to treat my Covid as the best guess is that this is from me not fully clearing covid combined with obin ramping it back up before it was gone. The infectious disease doc had some fancy ways to basically determine that this is still an active infection and not left overs of my 3 week ago infection. Basically, it's the same infection and just lingering. I really don't have any of the typical covid symptoms besides fatigue, a very slight cough a few times a day, and the fever that comes and goes.

All of this has left me exhausted. I feel like I have given up so much for this disease. I'm 41 years old and I feel as though I'm missing out on so much of life. I am trying to remain hopeful. But even when I see people write things like ("Then you'll get 2-3 years off treatment where you don't have to think about it."). I gotta tell ya, that almost doesn't feel worth this. I obviously can't do anything about that and could certainly get longer (or shorter) remission, and I get that. My 4 and a 1/2 year old is loving life. She is getting to hang out with people and stay with different friends so my wife can visit. So for her, this is a fun event. She doesn't understand and I should be grateful for that. But in reality, it's hard. This is my life and I have to find a way to live with this reality somehow. 15 long years I've been dreading this moment of having to do treatment. The last 5 of that dealing with a huge spleen, massive tonsils, and terrible quality of life. So, even if and when I get through all of this, what is there to look forward to? How much good time before the slide back to massive tonsils, a spleen that keeps me from doing activities that put me at risk of bursting it, etc?

I'm sorry for the negative tone. I'm struggling right now. It's the second semester in a row that I've had to drop a college course that I'm taking to improve my life. It all seems so moot right now. I'm trying hard to just go one day at a time but it's getting harder to do that.

Thanks for reading.

Jeremy

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Jammin_Me profile image
Jammin_Me

Jmiah717, I 'd like to begin with just how well you handled the serious set backs you've been going through continuously. You really took them in stride.

It is o.k. to feel the way you are feeling. You saw this coming for a long time, then as it dealt you some bad hands, you haven't had the chance to report about so many of the good results you seen so many others get to report.

You are tired physically and emotionally and that colors our thinking. Putting on a happy face isn't making it go away and that is alright. What you have to do is submerge like a gator. Rest up! Try to tell yourself, " I'm just waiting for my big win". (Even if you don't feel like it or want to hear it you've got to). That beautiful little daughter of your's is what your resting up and waiting for your chance to say honestly, "Yes, honey I'm feeling pretty good today".

You are in a hospital stuck there, why not ask for a therapist to drop in. Let them know you aren't in crisis yet but, the gloom isn't leaving and this is getting to be a bit more than you can take at this time. It doesn't mean drugs or appointments and the whole 9 yards, you need someone to talk to. They can listen and you won't have to protect them like family or friends. They can help you gain perspective and re-focus. You are over worked.

I look back on a photo of my little 2 1/2 year old son on my shoulders when I caught hepatitis. My skin was yellow, I had dark circle under my eyes. My wife snapped that picture because she didn't know if my boy would have me much longer. He's 32 now. I've needed a lot of time outs for many reasons. I didn't want to take them, but every time I did it was because I was pushing too hard.

Re-group, then go on, your win is waiting for you.🙂✌️

Jmiah717 profile image
Jmiah717 in reply to Jammin_Me

Thank you for the response. This is all really good advice and I appreciate the perspective. As a therapist, I totally agree with the need to get back in therapy. I've known I've been at that spot for some time and kept pushing it back until the time was right. I like your idea and I will pursue more support for myself that is outside of family and friends.

And to be entirely transparent, I do feel pretty decent today. It seems like I'm going to be here for another few days or so but they are taking this seriously and want to make sure I'm not right back again.

Thanks again,

Jeremy

Jammin_Me profile image
Jammin_Me in reply to Jmiah717

I did not know you are a therapist, I want to sincerely express my appreciation for the work you do. They've been there for me for one particularly rough patch. It kind of makes sense too isn't the barber the one who needs the haircut?

I hope you can get past this infection and back in harness when you're able. Have a great day.

Jmiah717 profile image
Jmiah717 in reply to Jammin_Me

Thank you. It's certainly super important work that I've been doing now for over a decade in a variety of settings. I've just recently taken on the challenge of trying to change gears and learn computer programming and computer science. But I still have my toes in the work for now. Thanks again.

Vlaminck profile image
Vlaminck in reply to Jammin_Me

Ditto what Jammin said so well. Also, as you are already in a place where they can do another test easily, maybe ask for them to check for epstein barr reactivation? -- which also makes you feel miserable, has symptoms similar to CLL, causes incredible fatigue and sadness, and is likely to reactivate when immune system lets it. They don't have a cure but if no EBV, terrific, and if active, think they give IgG sometimes plus might help understand what might be compounding your issues. In any event EBV does ebb and flow (I'm in an ebby period so knocking on wood), and when you get neutrophils back, may disappear back into its hiding place.

Jmiah717 profile image
Jmiah717

I'd be remiss if I didn't add: Despite all of this, treatment has been by most accounts a great success thus far. My marrow went from 77% to 0.7% infiltration in two cycles. And my counts have all remained in normal ranges other than these blips with neutropenia that started a few weeks ago. So, here's to getting back on track and finally clearing this Covid virus so I can keep this train going and get off meds for a long while.

MisfitK profile image
MisfitK

I think your title has it right - you've hit some bumps in the road, but you're almost to the point where you're gonna be able to have smooth sailing again. You just have to go a little farther.

One of my favorite sayings is "It's always darkest before the dawn" - and seeing your later posts, I'd imagine your dawn may be just around the corner.

As for how long the dawn will last - who knows? I find that having lived through Covid (and getting my CLL diagnosis during it), I don't take any good time for granted. Instead, I make short, middle, and long term goals to try to use my good time to the utmost and figure some plans will just get changed as my health changes...and after 2020, change is okay, as long as I'm still here to deal with it.

that all sounds so hard. Being powerless over this disease, not that I have power over anything else, makes things really challenging. I’m glad your wife gets to visit.

I’m 41 and will be starting my 2nd treatment. Diagnosed 2016, treated 2018.

I hope you soon start feeling better.

Jmiah717 profile image
Jmiah717 in reply to

Thank you and best of luck with your next treatment. I certainly agree with the aspect of our relative lack of power. I am glad she gets to visit too. That has been an immense benefit for both of us I think.

Palmetto profile image
Palmetto

Some encouragement. Venclexta and Obinutuzumab is a powerful combination. It immediately dropped my husbands neutrophils to near 0. This happened numerous times and in fact, he never achieved the maximum 400 dose and had it start and stop several times over a 5 month period. Still he was able to reach undetected MRD by testing and BMB in just under 6 months. He has been off all treatment for 14 months now and his blood work is excellent. Since your response is so fast so far hopefully you will not have to stay on for the full course before you are able to reach remission. I don't think there is a one size fits all formula for how these treatments work. Sorry this is happening to you and at such a young age. It is no fun being in the hospital even for a day or two.

CycleWonder profile image
CycleWonder

Jeremy - dealing with Covid and CLL are a drag on all of us. I’m happy to hear you are improving and the CLL meds crushed the CLL. Sadly they made the Covid worse. I hope you are home soon with your family.

I’m still waiting for 2023 to be a happy year. We’ve been dealing with a family crisis as well. Take care of yourself. I talk with my therapist every two weeks. It helps me focus on living a happy life even if those near and dear to me are choosing a dark path.

mickimauser11 profile image
mickimauser11

I had viral and bacterial infections but after OV treatment not anymore it does take some time past treatment for the immunesystem to recover. But the disease took years to develop it will take time too to see improvements.

Oh dear Jmiah717, you are really going through the mill! I am so sorry and hope you feel better soon. You seem to be getting good care from various hospitals and that has to be a plus point. Please stay strong and take care. God bless you.

Pageboy profile image
Pageboy

Hi, sorry it’s been so tough but you will get better and your treatment will work. You’re young and it’s daunting to know you have to live with this disease for years to come, but with all the advances, living well - a lot the time - is the likelihood. The Paxlovid (plenty about it on these pages and it happened to me) clears the Covid but for many of us not fully. It therefore ‘bounces’ back. Unfortunately, it sounds as though this might have happened to you, and in your clear window you returned to active treatment. I waited a month for my last Obin after testing positive, which was frustrating, but hearing your story obviously the right thing. I’m sure you will be feeling better soon. For me, I find (eventually!) giving into how low I’m feeling for a while, taking a mental break, gets me coming up again.

Garston profile image
Garston

Hang in there mate ,we are not going to let this awful cll beat us .You will get through this .Take care and stay strong.

spi3 profile image
spi3

Yes its hard. but you have the courage and the wherewithal to share your scary journey and give folks hope that no matter what you faced there will be brighter days. You and your family will be in my prayers.

Jjcphila profile image
Jjcphila

Hi, Jmiah, just adding my support here. I'm 41, have SLL, receiving treatment, have little kids, avoiding infections, getting infections, etc. The whole thing is really exhausting. No advice to give; I'm just grateful we have a community here that understands. Hope things improve for you soon.

Regards,

Jason

Poodle2 profile image
Poodle2

Oh Jeremy, buddy, hang in there...I really feel all the emotions you are dealing with, in fact it really makes me emotional. I wish I could pay you a visit and give you a big hug.

IT WILL GET BETTER.

YOU ARE STRONG.

IT IS WORTH IT.

You are at the best place you can be. They know what the issue is. The GCSF injections will work, they will bring your neutrophils up. The antibiotics will work too. Your body just needs time. It is frustrating, scary, upsetting, makes you feel lonely but it will pass.

I know very well what you are going through. I was dealing with an ongoing infection for 5 months. I just couldn't shake it off. So many different courses of antibiotics. The infection and its effects on my body made me feel - depressed - it really did. I had these intrusive thoughts - just like you - what kind of life is this, I'm just a burden to everyone around me, ...I don't even want to say the worst that my mind was thinking of then ...then immediately feeling guilty of having these thoughts as there are people worse off than me, still going, not giving up...it was a very low point in my life and my consultant referred me to their psychology team urgently.

The hospitalizations were never-ending, every single week for the first two months, I was in A&E hooked up to antibiotics, getting my GCSF shots...I felt so lonely in all these side rooms, by myself, summer outside, my kids having their summer holidays and I was "wasting my life" in the hospital. I was so disappointed and sad and angry when about 8 weeks into my treatment I needed another blood transfusion. I felt angry with my body...everyone else (it felt) zoomed through the treatment and here I was spending literally half of my life in hospital beds.

I won't say don't feel the way you do, as it doesn't help and it won't make you stop feeling sad, angry and lonely...but you will get through this, it might take a while but it will pass.

They will bring your infection under control eventually. You will get through all the infusions and once you do, things will get easier.

Are you on prophylactic antibiotics? Maybe something to discuss if you aren't. It would be worth keeping a closer look at your neutrophils regularly (when they discharge you) to establish what is happening. They tend to go down after each O infusion and tend to be at the lowest point around 7-14 days post infusion. It might be worth having regular GCSF injections to keep your neutrophils in a safe range.

Remember, neutropenia is very common on O+V and post treatment.

Remember that going through what you are dealing with at the moment is very common for blood cancer patients - I know it doesn't help with how you will feel at the moment but - the doctors are used to this because it is so common and as a result they have so much experience dealing with all of this...

...just sleep, eat, drink, get up when you can, look out of a window if you can, watch the world go by...give your body what it needs.

Petra ❤️❤️❤️

Jmiah717 profile image
Jmiah717 in reply to Poodle2

I so greatly appreciate your message and feedback. I know you have been through it and have felt the ups and downs and the doubts of life with having CLL at this age with kids.

I agree, it sure has seemed like everyone else got right through treatment with no issues even though I know that is not the case. I have actually not had too much issue up until recently. My ramp up was without event. My other infusions have been fine up to this point. It just seems like it's a bit of a combo effect of having trouble clearing Covid and the treatment timing. So, I am really hoping my team is working as hard as they say they are on a plan.

The hospital team this go around has been great. They have come up with a great plan and so far it's worked. We are doing 4 days (last dose tonight) of Remdesivir and then home tomorrow with a full course of Paxlovid. The idea is to keep the virus from replicating as long as possible to allow my body and my new neutrophils to fight it completely off. My counts are all back up in the normal range after two neupogen shots. Sounds like we will probably monitor that situation but last time that essentially lasted me 2+ weeks and probably only really dipped like it did because of Covid starting to replicate again after my medicine getting restarted.

So for now, I'm off Venetoclax for a while until I can fully clear this thing. Then I guess we'll reassess and probably delay my next Obin infusion. The thing about being on a trial is they can't delay things as much as they could off a trial due to the timelines restrictions they have to work within.

I'm looking forward to being done with treatment and particularly Obinituzimab. Not that I'm not thankful for what's treatment has done so far. But I'll be ready for a break of however long (I hope a very long time) after all of this.

Stay well, friend.

Jeremy

Poodle2 profile image
Poodle2 in reply to Jmiah717

It sounds like they have a good plan in place👍🏻check your CRP levels when they do your bloods, ask them. Compare what your CRP has been like over the last couple of tests. You want to see it going down, anything below 10 is considered normal, if above 10 it means there is still an ongoing infection.

The treatment looks like it's easy breezy, cannula in, pop a few pills...don't forget how powerful the drugs are, so powerful that they have to monitor you daily when you begin. There is a lot going on in your body once the drugs are circulating, your CLL is still there, your bone marrow is being cleared and is trying to recover from years of abuse. Throw covid into it...I mean even healthy people struggle with covid or the aftermath of the infection.

Time is your friend even though it might not look like that now...

Hope you are feeling better today, mentally as well? Give us an update when you feel up to it, no pressure.

Petra ❤️

Jmiah717 profile image
Jmiah717 in reply to Poodle2

Well, the best guess of the infectious disease docs here at Penn State Hershey Medical Center is that I was in the process of clearing covid and then restarted my Ven and had an Obin infusion. Since the virus had not been completely cleared at that point it started replicating again and caused me to get sick. Seems like a bit of a combo between covid and treatment that causes my neutrophils to crash so fast. Treatment, prior to covid, did not do that. Though I know that can change like it has.

So, we did sort of an unconventional treatment since we are treating this like I just got Covid even though I've had it for a while now. We did Remdesivir for 4 days and I will go home today with a 5 day script for Paxlovid. I will hold all of my cancer meds until I am done with those scripts. The hope is that I will be able to clear the virus and not have this happen again when we restart treatment.

I suppose there will also be discussion about monitoring and prevention, etc, but my team has been pretty hard to reach, frustratingly. Even for the docs here. So, it is what it is. By all accounts, my blood work is trending in the right direction and neutrophils are currently totally normal. We shall see how long that lasts.

As far as mentally, I don't know. I'm not there yet. I'm doing my best to operate within reality. I just don't like reality all that much at the moment.

Poodle2 profile image
Poodle2 in reply to Jmiah717

Keeping my fingers crossed it helps and you clear it out.

It's ok if you are not feeling upbeat and positive, you have every right to feel the way you do, it is not fair and you do not deserve it...I do believe it will get better ❤️

Jmiah717 profile image
Jmiah717 in reply to Poodle2

I do hope you're right. I'm going to do my best to stay positive and heal.

Wendy328 profile image
Wendy328

Just wantng to give you a big ((hug)) you´ve been through a lot and the anticipation syndrome sneaks in there when you least expect it. Wishing you a spedy recovery so you can get back to your wonderful family. Thanks for sharing it means alot when can relate to each other.

Stamphappy profile image
Stamphappy

👋 I am in watch and wait, so I cannot give advice from experience. But I have children and grandkids. The separation due to covid is heartbreaking. I scrapbook all those loving faces. From that viewpoint, I hope you can close your tired eyes & pull up a sweet memory of your sweet little girl looking at her daddy with those loving eyes that wrap their emotion so thoroughly around your heart. Can you hear those giggles and feel those hugs and butterfly kisses? That is what gets me through rough days, though mine are nothing compared to yours... I read people's stories here everyday...It's terrifying but I focus on the love of family and it becomes strength to face whatever is ahead of me. Illness makes us feel lonely & feeds into fear & despair. Especially with covid & CLL... I know your love of family and life is strong because you expressed being in a dark place. I believe love is stronger than fear or hopelessness. I hope you can turn the love you feel into fierce fighting strength. We have a wonderful God-sent group here. I'm so glad you reached out! You are in the best place to get your body the help it needs 🫂 . Allow yourself to feel what you feel. It is not weakness. It is your soul crying out for support. Throw it a tow line- focus, my friend, your little girl and your wife need you. Your job is to get your arms back around them. There is no place in our plan for those darkest thoughts that we all have in weaker moments... Each passing day is one day closer to your goal. The road is getting smoother and those hugs are just around the bend. If you do find a pothole, our community will be right there with a tow truck 😊

New-bee-cell profile image
New-bee-cell

Thank you for sharing your experience Jeremy. I will remember this when I have treatment / other health challenges. It will reassure me that periods of despair are a normal part of the journey. Again, thank you. (Virtual hug).

Smakwater profile image
Smakwater

Jmiah717,

Thank You for taking the time to write these thoughts. It may help someone else to not feel alone if they are going through a similar challenge.

Stating facts from your perspective can be a first step in a healing process. Reaching out can also produce useful feedback. I do not view you sharing your thoughts as negative, rather it proves that what someone else shares perspectively may or may not be absolute in the case of another. It also emphasizes the importance of stating our thoughts to one another as either perspective or as a substantiated medical facts which are subject to individual circumstance.

We do however, share unity in a common goal that is to provide information to each other in order to encourage and substantiate Hope in our pursuit for quality of life.

We know that one size shoe does not fit every foot, yet we have a wider variety to choose from. I think I see an underlying point that we should not wear each others socks, but keep talking about the ones that feel good on our feet individually.

Keep looking for the socks that feel the best, and know that it is ok to want a good foot rub as well.

I hope that you find the balance in treating this disease.

JM

Horatio2 profile image
Horatio2

Jmiah717, I am so sorry you are going through all of this. I completely understand your feelings, and you have every right to feel them. Sometimes, just writing them down can help a bit. I have recently started treatment (acalabrutinib and venetoclax) as part of a trial, and I am now working my way through my first infection ... a rather bad UTI. Sometimes I think I dwell on this disease and how it has affected my life. Please know that you are not alone. This group is amazing, and I have found such comfort in being here, knowing that most likely what I am feeling or going through, someone else here has as well and can give me encouragement. Hang in there. Things will get better!!!!!

Bloodwork profile image
Bloodwork

I have nothing of substance to add. I'm really new to my diagnosis and this community. I'll just say that your despair and anger is completely understandable given how completely exhausted both mentally and physically you must be. I'm pulling for you. You deserve a respite and, while we don't always get what we deserve, it sounds as though you may have one on the horizon.

Dahlia7 profile image
Dahlia7

It is not unusual to despair with this disease. It’s so important to maintain a positive outlook and feel in control of your emotions. It will impact your response to adversity in general and CLL in particular. Also you must believe that science is going to keep pace with CLL and for many even cure it. We are indeed in a scary place and the sound of our own wheels can drive us crazy. Be optimistic and enjoy every day even as we all know that is much easier said than done. I had a pituitary tumor at 39 and CLL in my 50s and have been in the dark corners of my mind. I try to look to the future optimistically while living in the moment but still have bad days. I hope you can manage to have many many more good days than bad. Tony

Jmiah717 profile image
Jmiah717 in reply to Dahlia7

I usually do a pretty good job of staying out of the darkness but sometimes I end up there still.

Doggoneit101 profile image
Doggoneit101

I felt the same when I was taking Imbruvica. I was in and out of the hospital so much it was ridiculous! I got infections from things I didn't even know could cause infections. I learned about how the immune system works real quick to stay at home. It just became a new way of life for me. I try not to think about the good ole days and focus on the present. I do the treatments the specialist recommends and deal with the side effects the best I can. I find HOPE everywhere I can that one day they will find a cure. Just look at what going on with CAR-T therapy and CLL trials! I want to be here to see my children marry and have grandkids. Our quality of life does sometimes sucks I agree but it could always be so much worse. Just remember it is only temporary. I sometimes have to remind myself that I have a slow growing cancer and not something that's going to take me fast. I have time to say things to my family and friends that some didn't get the chance to say. I get to do things I've never done that I always wanted to do. Things will get better. They don't call it a rollercoaster for nothing unfortunately.

I'm so sorry to hear about your struggles. I think we all have been where you are right now as we move through this unwelcome journey. Know that you are not alone in how you feel and it is normal and perfectly ok to verbalize your concerns/frustrations. You WILL get through this....you really will......this too shall pass. I know it feels like another "assault" on your life right now, but it will get better. Prayers covering you today for a quick recovery and peace for your soul.

AmCLL profile image
AmCLL

Hi Jmiah,

You have written the most courageous and honest post, it is much appreciated. You have brought forward the absolute truth about the course of the disease we are all fighting. It does have its moments which present with some troublesome issues which generally are not long lasting. Yes they affect our thought process momentarily and pass away just like the sharp bend on the highway. Our journey battling CLL is some what similar to challenging a tough route to our destination.

Jmiah, you will do very well, you will get out of this remember your are the driver in charge and you know how to cross those sharp bends.

Focus on health, stay healthy.

AmCLL

Phil4-13 profile image
Phil4-13

Jmiah717, much love to you, your wife and your daughter. I will pray for you to be well from all the health complications you are having. That is always my "go to" in times I am confused and am overwhelmed. You have "visited" those emotions. Remember, it is just a "visit" and you are smart to overcome those low points. This entire group has shown me how to stand strong in my less than perfect days. You reached out to this strength. I pray it embraces you so much, it will be seen by your wife, and your doctors. God bless you, Jeremy. 🙂 Sandra

slsfn profile image
slsfn

Hi Jmiah717

It is deeply depressing and frustrating when the treatment you have been building up to for years has to be interrupted- no wonder you are feeling low. You just wanted to get through it, and move on

I hope my husband’s experience gives you encouragement

He started treatment in July 2022, but caught Covid after only two O infusions, in late August

He never got to start Venetoclax.

He is much older (70) than yourself and unfortunately didn’t get Paxlovid during the critical early days after testing positive.

So you will be in a much better position to recover than he was.

He had several weeks in hospital with very similar symptoms and treatment to yours, and has now cleared the Covid, and is feeling good!

We are waiting to hear what the care plan will be, but the Haematology team suggested they would probably not give any further O, because of my husbands strong response ( including a severe reaction to the first “trial” infusion, and later on neutropenia.)

Instead we are expecting him now to start V alone.

Sending you very warm wishes and best of luck - it does need patience, but you WILL get there.

Mystic75 profile image
Mystic75

Jeremy,

I'd like to echo what New-bee-cell wrote and thank you for your post, even though you were under a lot of duress and pain when you wrote it.

One of the functions of the forum is to have a safe place to go to and receive much-needed support when needed. By sharing what you are going through helps others feel like they can do the same thing.

I hope you are improving and you are starting to see the light at the end of the tunnel.

D.xo

Stamphappy profile image
Stamphappy

Jeremy, just dropping you a line hoping today was a better day. Thank you for your post. I hope you feel the heartfelt support of this community. Just think, it's coming to you from all over the world...amazing, isn't it. You are not alone. Take care.

TruthJunkie profile image
TruthJunkie

Well, it sounds as though you have really gotten a steady beating for awhile now. Of course you are justified in feeling the way that you do. It is pretty hard to picture a pretty future, when one is in a hospital bed. Just try to hang in there, a little bit longer. This will all fall into line very soon for you, I feel. And, you will enjoy the beautiful days of Spring and Summer with your wife and daughter. School will be there next term, and the one after that. Life will get better for you, I hope and pray, soon.

Sepsur profile image
Sepsur

you get all the usual platitudes of ‘growing from this’ or ‘you’re only given what you can handle in 24hrs’ - occasionally I think that I don’t want to grow from this and I don’t want anything more to handle well thank you - I just want a place to rest in the shade - for a week or so.

Jmiah717 profile image
Jmiah717 in reply to Sepsur

No doubt. I don't want to grow anymore. And on the contrary, for someone with PTSD, being locked in a room for 5 days at a time, worried about one's mortality, was quite likely deleterious. But, things I can control and things I can't control...so I do what I can.

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