Lupus & Cancer

[Tiras]

Finally got the surgery for the cancer scheduled. It will be on May 6th in Birmingham Alabama.

It is a little cool here this morning. Got a small fire in the fireplace, just to knock off the chill. Of course a cup of coffee doesn’t hurt either!😊♥️

[PMRpro]

All the best

[Tiras in reply to PMRpro]

Than you!😊♥️

[DJK99]

Hey Tiras - just wanted to say Hi, and hope you are feeling OK. All rather daunting all this I know. Ive got my first oncology appointment on the 5th April so can let you know what they say about radiotherapy and lupus (plus heart if you have that too) issues. Let me know if youd like me to update you and Ill put a reminder in my phone ;). Love the fire by the way! x

[Tiras in reply to DJK99]

Yes! Please keep me up to date, and I’ll do the same for you! I would like to know what they tell you about radiation and Lupus? I am afraid to try it especially with my skin issues from Lupus.

I don’t necessarily have heart issues but, I do have malignant hypertension (basically what that means is they can’t control it, even with medication).

Thank you on the fireplace! We love it too! We heat our house with this fireplace (our house is 2200 sq. Ft.) this fireplace is only about 5 years old, it has a catalytic converter! It cost us out of pocket (not counting our time to cut firewood) around $75 to $100.00 per year to heat our house. (We have 50 acres so we have plenty of wood to cut, we don’t buy it).

We could do a private message to text (I would give you my phone number) and keep each other informed?

Thank you!

Have A Very Blessed Day!

[DJK99 in reply to Tiras]

Hey Tiras - yes that would probably be better rather than doing it on this post... mind you I remember searching for others that had had radiotherapy/cancer with lupus when I was first diagnosed and did find a lovely lady who has been helpful. She has quite a lot going on though - and also with her friend who is also sadly very unwell - so she has enough going on. What I mean is, It is helpful for others to share on here... I certainly didnt know who to talk to about it all a couple of months ago, so did my own research as you did. We can do it via the chat bit on HU which I do with two others and its really helpful. Maybe we can post something helpful in the future if we have radiotherapy. I have to say, for me, Im already thinking I dont want it... although Im being strongly advised by surgeons and nurses to have it, due to the type of cancer.. otherwise they would have strongly advised mastectomy. One or the other they said. And chemo would be suitable too - but probabaly not with someone with my co-morbidities.. although more info will come out on the 5th. But I said today at the Breast Clinic to the MacMillan nurses that quality of life is pretty important. There are tons of nasty and life lasting side effects for people even without Lupus for radiotherapy on the breast.. unsure if they are the same for your area Tiras. Many similar Im guessing. But everyone is different.. and they can alter the amount they give us etc... to minimise side effects.. hopefully. Anyway, Ill write to you on the chat part after my appointment. Hope the fire is still keeping you, your partner - and your tootsies toasty! x

[Barnclown]

🍀🤞❤️🍀🤞❤️🍀🤞❤️ am right by your side dear Bare Foot Gardener 🤝👍👌✌️ Coco

[Tiras in reply to Barnclown]

Thank you!!!!!

😊😊😊♥️♥️♥️👣👣👣

[Ianrussell69]

Will be thinking of you wishing you a speedy recovery

[Tiras in reply to Ianrussell69]

Thank you!!!

😊♥️

[DRunnerchick]

Tiras,

That fire 🔥 looks toasty warm to me. When I lived on acreage I had a Lopi wood stove that would heat our entire house too. We lived in a beautiful place that was at the snow line and would sometimes lose power during storms. I had an espresso maker that worked on top of that wood stove 😁☕️. Great minds think alike! I will keep you in my thoughts and prayers as you approach May 6. Keep us posted please. 🌞

D🏃🏽‍♀️

[Tiras in reply to DRunnerchick]

Thank you and I will.😊♥️

[Lupus1980]

I dont know what kind of Cancer you may have, I was diagnosed w/breast cancer. I was put on Ranexa and had surgery. My "Ammonia level" rose and I ended up locked outside of my house one night! My primary dr called my Oncologist and my Radiation med (Cytoxin) was the culprit (apparently). I am off Cytoxin, had surgery, and still on Renexa. Pluse taking a syrup medication for my Ammonia levels. Plus my Lupus started flaring up. I now need to have someone stay w/me (no more Midnight walks) and am slowly feeling better! My cat actually woke up my "caregiver" to let her know I wasn't in bed sleeping, the night it happened!

[DJK99 in reply to Lupus1980]

Hey there - Sorry you have had all this to go through - must have been quite frightening! Well done that puss (I have one too but no one to wake up - just me when its nearing meal times!). I have recently had a lumpectomy and lymph node removal. Having my first oncology meeting in a weeks time. Im v worried about side effects of radiotherapy - short and long term. I was 2cm and Grade 2 invasive with nothing in lymph nodes thankfully. I,m 56 and have SLE and heart condition so worried about all of the contra doodas. Radiation meds? Why did they give you those as well as the actual radiation? Is is common for the amonia levels to go up? Are you on hormones too? Tamaxifen? Or? I;ve read these can really bring on lupus flares in the skin... and they have to come off them. How is your breast area looking now - howlong ago was it you had it? Not looking forward to any of this I can tell you... and poor Tiras is also in the same place mindset-wise... Be really grateful for your info. Thanks so much and hope you are doing a little better today. D

[Lupus1980 in reply to DJK99]

There was minimal radiation because of my SLE..I forgot to mention that I've had TWO kidney transplants. One from my Sis, one from my Brother. The radiation might have affected the kidneys..so that's why I'm on Ranexa now, so I'm minus one breast (my surgery was 2 months ago) and I seem to be getting "ghost pains, every now n then, sharp pains. My lupus has been quiet, although I do get tired again easily. I hope this helps..keep in touch!

[DJK99 in reply to Lupus1980]

Thanks so much for your reply. Goodness, you have been through it... OK so they did minimal radiation due to your SLE - were you mod or severe? How much radiation did you have? Mine are saying (or were anyway) 3 weeks - 5 days a week. Is that minimal? Did the radiation affect to the point you needed new kidneys - or was it lupus nephritis? Sorry - hope you don;t mind me asking all this... so soon after your surgery too. I have heart condition - so a little concerned the radiation (which will be on the left hand side so not good) will make this worse. Are you on lupus meds? I usually take methotrexate but am off them again (had nasty foot surgery in November) so Im flaring last ocuple of days. Urg. Hoping you pains start to get better.. do you have any free accupuncture or anything in your area? We do in mine.. havent gone for it yet.. but feel I need something as a little blue suddenly.. Thanks so very much - you sound a very strong gal!

[Lupus1980 in reply to DJK99]

Thanks for saying that..I got the strength watching my Mom have Rheumatoid Arthritis most of her life..no sign of Lupus in my family (except me!) My Mom was on Methotrexate. I was on PREDNISONE. The dosages ranged from 20 mg (when I was in the hospital) to 2.5 and 5 mg on alternating days (currently) the high dose over worked my kidneys (hence, they quit). My parents passed last year, so I was dealing w/stress of separating stuff w/my siblings, which activated my SLE..(not good). I have someone staying w/me to help w/housework, so I'm not overwhelmed! I have my cat to de-stress! She never leaves my side! I have 4 doctors, rheumatologist, kidney, cardiologist and transplant , who watch my health very closely! I take my meds like I'm supposed to and try not to stress!

[Tiras in reply to Lupus1980]

Thank you, I hope you get better soon also.

I have prostate cancer!

Wishing you the very Best!😊♥️

[Frosty1960]

I had lung cancer two years ago now going back for 2nd check up tomorrow, I also have lupus and lot of skin issues.

I had a lobectomy to remove tumour was not given course of chemotherapy as follow up because of it and issues with chd. I had spoke post op with surgeon who was content all had been removed and the chemo was not necessary so wasn't concerned.

I do have more issues now with skin in particular and sun sensativity is a real problem now don't know if cause is down to trauma or if follow up meds are causing problems are getting tested shortly to see if can pinpoint problems.

Thats only my experience of course and we are not all same, hoping all goes well for you. 🙂

[DJK99 in reply to Frosty1960]

Hi Frosty - sorry you have been through all this, and are still. Did you have radiotherapy at all? Im guessing you did due ot the skin issues. What are they like specifically? Or is the meds as you say, it might be. I know the meds theyll want to put me on soon also bring on bad rashes etc.. this is hormones etc. There is a lot of research out there on this. I guess we all have to weigh up the pros and cons and all that. Hope you get some good support at our follow up. All the best to you, D

[Frosty1960 in reply to DJK99]

No radiotherapy either straight forward chop, as i said previously oncologist didn't want to put me through chemo for fear of causing issues, I had spoke to surgeon after surgery he reasured me be okay.

Rashes unfortunately are a big problem for me and have got worse since having the cancer, I have got photosensitivity testing arranged hopefully get some help controlling them afterwards. On the plus side got my 2nd annual check up yesterday, xrays are clear so pleased with that.

[Tiras in reply to Frosty1960]

Frosty;

I definitely agree no radiation! I too get rash extremely badly. Especially from my waist down to my feet! With the prostate cancer I definitely don’t want radiation in that sensitive skin area!? I’m having enough issues just getting clearance from other doctors just to have the surgery (cardiologist, pulmonologist, rheumatologist, etc). From other health issues.

Thank you so much for your insight!

Wishing you the best!

[Frosty1960 in reply to Tiras]

You are right my rashes can appear anywhere now, I think the cancer takes a lot out of the system made me more prone to it.

I am going for photosensitivity testing soon as slightest bit of sun sets me away. Hope all goes well for you and a good result without any problems .

[Tiras in reply to Frosty1960]

Thank you!

I hope all goes well with you too!😊♥️

[DJK99 in reply to Frosty1960]

Thats great news Frosty re the clear xrays. So pleased for you. Hope the skin tests bear fruit and you get some relief there. All the best x

[Frosty1960 in reply to DJK99]

Thanks DJK99 was a relief its always hard to actually know yourself when there is so many other things going on, if they can find something to help with sun sensativity would be great might not feel like a prisoner then. I used to do a lot of fly fishing and loved getting out in countryside really miss it. 🙂

[Wendy39]

I’m glad you have a date set now. And you have a little time to prepare yourself mentally and no doubt with you, find out what you can do to help yourself along the way. Take care of yourself. x

[Tiras in reply to Wendy39]

Hi Wendy;

Thank You! Yes there is a lot to do to prepare. I have to start doing exercises, to build pelvic muscles, even though I am a guy, the same exercises that ladies have to do for bladder control. That is assuming it does come back after the surgery? Unfortunately, that is not the only thing I’ll have to do!

Honestly, it is scary of all the changes that could take place? We just go on and do what we have to do!

Again thank you!

[jopo280886]

I sincerely hope all goes well with the op! Take good care of you 👍🏻 My thoughts are with you 😘

[Tiras in reply to jopo280886]

Thank you so much!😊♥️

[Aralyn]

What a lovely fire to cheer and warm you up! Good you have the date set and hope all goes well for you, recovery will probably be the worst part. Took my mom a lot longer than she thought to recover from her cancer surgery. Prayers are with you. Keep on, keeping on. 💕

[Tiras in reply to Aralyn]

Thank you!

Yes, we love the fireplace also.

The healing time is one of my worries, because, with Lupus it takes me two to three times longer to heal?

Wishing you the best!