My chronic MDS journey, symptom managment

[Chirley]

Julie, you are finally in the right place to get the treatment you need and family support is so important.

Good luck for tomorrow's procedure.

[Julianna]

Hi guys, I'm doing ok & even got to go out of hospital on day leave for Christmas!

I'm waiting on results for bronchial biopsy. But have started antifungals because they think it may be fungal infection. Here's hoping they work.

I'm still exhausted from going out yesterday but it was worth it.

I really need to stay infection free this weekend, hoping to start chemo early next week.

Hope you're all enjoying the season! xo

[Julianna]

Another thing I wanted to add is that the matched unrelated donors (MUD) aren't as good a match as I thought. They are wanting a better match.

Thankfully at the moment the leukaemic cells aren't crowding out my marrow too quickly so we have some time up our sleeves perhaps.

The hardest thing through this is seeing the reactions of people around me to my cancer diagnosis. I think I'm doing fine with it so far. But hard to see my family's anguish & worry.

Well, have to push fwd. We all need to work through stuff to find that inner peace. Each to their own journey.

[Data]

Julie,
I was so glad to see your post and to see your positive attitude. Wishing you the best of luck in getting rid of the infection!! Glad you have family around that cares!!

Have as happy a holiday as you can and knock this thing on it's can!!


Data

[Chirley]

Julie....your silence has been deafening. I'm so pleased to hear you are doing better. Sorry the match isn't as good as you were led to believe. Sharnie has done well (after hiccups) on a not very good match though.

I know what you mean about the hard part being on the ones who love you. Just seeing the look in their eyes, and knowing all you can do is be strong for them.

Good luck with the chemo.

[Julianna]

I'm sorry I didn't mean to worry you, been a rollercoaster of emotions kinda week. Needed the space to let it all sink in. I'm starting to feel so much better, infection wise, that I ask the nurses, am I really sick? Are u sure? But I guess it's good to start chemo as well as I can be. So all going quite ok. 😊

[Chirley]

Sounds like the Docs up here are on top of things. It's good to have confidence in them.

I've heard good things about that transplant unit/oncology ward.

Do you have/are you getting a central line? PICC? Port? Hickman?

I have to go eat CHRISTMAS left overs...I have a fridge full of them...I now weigh 45kgs can hardly eat a thing and I'm going into hospital for a week on Monday...I hate throwing out food but it looks like I'm going to have to but in the meantime I'll just keep snacking.

[Julianna]

Christmas leftovers hey...maybe the neighbours? But I bet everyone has a fridge full! It must be nice to have a pic at your favourite foods. Snacking is the best.

I had a picc line put in last Friday, the best thing that happened to me! So don't miss them fishing around for veins. Love it.

Thanks Chirley, I hope all goes well with you xo

[bailie]

Julianna, I wish you the best. I had my "three lumen Neostar" removed this week and I miss it already.

[Chirley]

Thanks Jules, I'll be in Mater on Monday for another week of treatment.....hoping to see the New Years Eve fireworks on the river for the first time ever! There is an outside balcony on the 8 th floor near the ward I get admitted to so I should get a reasonable view. It's a pity the F111s don't do the dump and burns any more.

I've never had a PICC...went straight from IVs to port. Love my port.

[Julianna]

Sorry to hear that bailie. Hope they aren't pricking u too much. That sounds awesome Chirley! I'm jealous. Might have to hook up my tv by then & watch.

So what treatment are u receiving Chirley?

[Chirley]

I have intravenous copper sulphate and steroids every day for a week each month as an inpatient. Last year it started out as every 8th week then every 7 th week then 6 weeks then 5 then 4. Now it's 3 in between treatments and I've been told it's only supportive as it doesn't appear to be working on stopping the Neuro progression. At least it fixes the bone marrow failure...my counts are never normal but they are still pretty good considering I used to need blood transfusions every two weeks and lived with hardly a neutrophil for a long time.

I haven't needed a blood transfusion now for about a year and a half.

Oooh, so uncomfortable....eaten too much. I don't even like gherkin dip so why did I have it?

[Julianna]

Gherkin dip...hope u feel better this morning.

I had a bit of an anxious night. Once I got to sleep I was fine. It's just all quite overwhelming. I have a very sore throat after my bronchial biopsy, apparently that's normal. And antibiotics should cover me for anything else nasty. Really need to stay well for treatment on Monday.

I think it all just got to me. And yes I'll name it, the possibility of not surviving this. Staying in remission without transplant is unlikely. That's only what the Drs said. No one really knows. But MDS to AML does have a poorer prognosis. So that plays on my mind from time to time.

The Christmas break makes it hard because if I'd like to talk with a councellor they aren't available. But I might have a chat to a nurse today.

I have a faith also. Like to be more active in prayer & make peace with myself. I know what I mean.

[Julianna]

Thanks for sharing about your treatment Chirley. We all have our own personally made journey. And if u can enjoy the new years fireworks at the same time, awesome! 😊

[Cheryl C]

Good to be hearing from you again, Julianna and to know that progress is being made. I can understand your thoughts about the seriousness of your situation - it's only natural. Just remember that God is aways there, even when the counsellors aren't! He's your best friend and you can talk to Him about anything, any time. He can give you peace and relief from anxiety (Phil. 4:6,7).

Chirley - I hesitate to say "You lucky duck" because no one wants to be in hospital having what you're having, but I'm so pleased there's an up side - enjoy the fireworks, girl!!

[Chirley]

Julie, I'm seeing a psychiatrist who specialises in death and dying and living with chronic illness mainly with oncology patients. He says I don't really need to see him but I hold on to him as my crutch. I only see him in hospital and his visits are brief but just to know that there is someone non judgemental that I can talk to and share my real feelings with, without worrying that I'm burdening him is such a relief.

There are things you can say that you just can't say to family or friends without feeling as if you are adding to the load they are already feeling. I thoroughly recommend that you push for that psych referral after the holiday break. It's amazing how helpful it is even just to talk without considering other people's feelings all the time. I used to get so anxious I felt as if I couldn't breathe and I'd have to sit outside in the middle of the lawn at 3 in the morning to catch my breath....that's all gone now. AND....I don't need medicine to help me through it.

In the meantime...those oncology nurses should be pretty good at listening and understanding. I've not met a bad one yet. It takes a special type of person to want to do that type of work.

I hope you have a better day.

[Julianna]

Thanks so much Cheryl, yes my comfort is in Him xo

Thanks Chirley, I will try & find a psychologist. I have one at home & wish she was here. There is one nurse I had a chat to today & it helped just to hear her say she understands my emotions right now. And that it's ok to be real about how I feel. I really understand what u mean about burdening my loved ones. They have shown me all kinds of emotions I don't know what to do with. All I say is, I'm ok. And I am, most the time. Some things are my battle alone and that's where my faith is strongest.

I really appreciate your encouragement. xoxo

[SLB]

Hi Julie,

Haven't been on here in awhile and so sorry to hear your news. I have spent some time up on level 5 at the RbH myself. I didn't have my chemos there but had my transplant there and couldn't speak higher of the BMT nurses. Like Chirley said, I am almost 22 months new and doing well (even just found out that my doc - dr Glen Kennedy - has said I don't need a BMA at my 2 year mark)!! A bit anxious about that really! Because you never truly know what's happening until they check your marrow. As you probably know, I had MDS that transformed to AML. I had 2 rounds of chemo to achieve remission but my bone marrow never regenerated so went straight to transplant with a 8 out of 10 match. All those things and more, meant that odds were not in my favour but really one cannot tell how things will go. I have read about many wiith much better odds not making it. And really I live with the fear that next month I might be back where u are and fighting all over again.

I, like Chirley, am a Southsider but travel at least once a month to RBH, so would be happy to pop in and see you or private message me at anytime if you want to talk to someone who has been there and who is still fighting.

Anyway sorry to hear your news and I am hoping your meds kick in quick and you are able to start treatment as planned.. Please let me know if there is anything I can do to help. Sharnie.

Ps good luck with your next round Chirley. I was in Brisbane Private on New Years 2 years ago. Didn't see any fireworks though... Think I slept through it all.

[Julianna]

Hi Sharnie, wow it's good to hear your story. Not good you still live with such uncertainty, but I appreciate u sharing with me. Each journey can be different & I'm feeling so much better right now that I'm wondering if spontaneous remission is possible! Maybe I'm still in denial, not sure. I guess I've been so unwell with infections for so long that it's so nice to be feeling more like myself. But I guess that's the best way to start chemo, being as well as possible.

Well I'm not going anywhere for a few weeks, in 6a South Oncology. Think I'm staying here for treatment. Feel free to pop in! Might send u pm.

[Data]

Julie,
Glad to hear you sounding more positive. I am not that good in that respect at times. Are you able to have a laptop in your room or are you doing your posting from a phone. In any case I am glad you are keeping the forum up on how you are doing. We may not all be in the same boat but I guess we are in the same ocean.

Best of luck in the coming weeks!!!

Data

[bailie]

Julianna, I am curious how your fungal pneumonia started out? I just sent an email to my Dr. describing how I have felt these last two weeks. Seems it could be early stages.

My situation:
1) dry cough seems stable and responds well with cough medicine. It is tolerable, but hasn't improved since our last visit.

2) fever, my normal for last six months has been 97.5. Temperature has consistently been close to 97-98 in the mornings (no medication) and gets to 99-99.5 (no medication) before going to bed. I have been sleeping well with Delsym night time cough and cold (Acetaminophen 650 mg, Diphenhydramine 25mg, Phenylephrine 10 mg). I take my temperature three times during the night and temperature has consistently hovered around 98.0-98.5.

3) Mild chills which are manageable with over dressing.

4) Shortness of breath. After almost any exertion I notice I am breathing hard.

5) I do not have a "running nose" or feel any congestion.

6) I do not have sweating or chest pains, I have some muscle ache but tolerable.

7) I sleep about 11 hours at night (usually 8 hours) and have taken (I normally never take naps) long naps about every other day.

It seems as though my blood has responded very well. My HGB, HCT, PLT, RBC, WBC and Neutrophils are at post-SCT highs (12-23 CBC). The "whites" and Neutrophils seem to be working well. I will let you know if anything changes before our appointment on January 2.

Thank you,

[Julianna]

Thanks Data 😊

Sorry to hear you're not well Bailie. My pneumonia was the bacterial sort, however once I was much better, this other thing started showing up on xray. Not sure of bronchial test results yet though. Fungal infections are common with low immunity. Sorry I can't help much more than that. There are some very nasty viral bugs out there too. Have to ride them out unfortunately. I think I've been struggling with all the above. I'm now neutropenic so have been covered well with antibiotics & a cough lozenge here & there.

Good to keep at the Drs if you're still not feeling well. I've been in & out of hospital for months. Glad I'm finally getting answers & treatment. All the best xo

[Cheryl C]

Good to hear from you Julianna! A couple of us have been concerned about you since we hadn't heard for a few days. All the best as you continue to find the best solutions for you.

Sorry that you are not well too, Baillie. You are a fighter and so positive, so I think you will come through this.

[SLB]

How did you go today Julie? Did you start chemo? Hope you are doing ok... Hope you are feeling better soon Bailie!

[Julianna]

Hey Sharnie, I'm in the last days of chemo. I'm in 5c now. Not feeling great but have done pretty well really. Nausea almost under control but I don't feel like doing anything.

Glad this part is soon over but know that I just have to take each day as in comes. Every new challenge as it pops up, with counts dropping. xo