IBC lounge: roll call, support and just a good place to hang out
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Glad to hear you are getting stronger after the stroke. That certainly is enough to recover from.
TT, hope everything goes well with you prostatectomy (not sure of the spelling) on the 21st. Certainly would not have wished this on you on top of the BC. You seem to have a can-do attitude about the surgery which is helpful. I could use more of that.
I am still trying to recover from the brain radiation. It will take a long time, but I am trying to be patient. Not back to work yet. Unsure if I even will go back. Pushing it back to Feb before I decide. I have to see what my MO wants to do with me to keep me NED. A chemo was mentioned so we will see.
Good luck to everyone and hope they do well.
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Thanks mara and others, I'll certainly report in as soon as I can put a finger to the iPad. Mara, what is it like post brain rads? Do you have pain there? You have several months before deciding if you go back to work, so take your time.
Valstim, the doll industry will help with rehab, for sure. have you regained full functionality? I ask this because a had a massive hemorrhagic stroke 10 years ago, and got a free trip to hospital in a chopper. But with intensive rehab, I managed to fully recover, except for losing sight in one quadrant of each eye. This is totally unnoticeable.
When people say to me I've had a few health issues, I explain that we live in a great medical era and we should be thankful that there is so much that can be done for us all. I know this doesn't make treatment any easier to bear, but just sayin'.
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Best of luck Traveltext, we are all rooting for you. You words are so true... We live in an ever advancing medical era so we have reason for our hope.
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TT, most of what I am dealing with right now is exhaustion. Not having a lot of pain. The odd time I will take acetominophen if I have a headache. I still sleep almost 12 hours off and on at night. Trying to up physical activity. It is not easy when I feel exhausted, I know it will help me in the long run. I think I was lucky in that I did not have to stay on steroids a long time. I was off them 3 days after I finished the whole brain radiation. I have gained weight since I did spend 6 weeks on steroids. They certainly add a lot of fat to the belly area mostly. I am sure weight will come off in time. That is not my number one concern.
As far as work goes, I am not rushing back. Radiation to the brain can take a long time to recover. MO is also checking me from the neck down again for any mets. Will be having a bone scan, CT scan as well so she can decide my drug regimen going forward. I may get Herceptin(targeted since Her2+). I may also get Herceptin/Perjeta, which targets all Her proteins and Taxol. The 2nd option would be given if my government will not allow her to start with Herceptin first. She does not want the government to decline Perjeta down the road so she may be forced to give me the H&P plus Taxol first. Since we are free healthcare, government has to approve it. The taxol would just be for approx 6 wks, She is confident we can drop it quickly since last scan show no other mets from neck down. Third option would be just scanning me every three months and no treatment. I am not keen for that one. I am extending work leave til Feb 1st. I should know my plan at that time and whether working is possible.
There can be hope. I try to find it when I feel decent. When I am unwell, it is harder to do. There have been many advances though and people have longer remissions than ever before. Stage IV people can be brought to stable more often, and for longer. There are also more drugs for those of us who must walk the Stage IV path. I believe in hope and recognize my longevity is largely a crapshoot for the cancer and the length of time my overall health can do treatment. Fingers crossed for a long time.
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Thanks for that comprehensive report on your condition Mara. It's only by us sharing such info that we can build a resource here for those taking similar paths. It sounds to me like you are getting best-practice treatment, and I really hope that the various combinations of drugs gets things under control. Best wishes to you.
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Thanks TT, I will be thinking of you tomorrow with best wishes on the prostatectomy. Do keep us posted when you can on that as well.
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Good luck tomorrow TT!
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Thanks MoreShoes. Tomorrow has arrived where I am and I'm writing this a few hours pre op. Will report back as soon as I can put finger to iPad.
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OK, six hours of surgery later and I'm recovering well. Surgeon happy with the job, therefore I am too. One more night in hospital and I'm outa here. Best wishes to very one, let's keep the good luck rolling.
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Welcome back to the world of the awake, Traveltext! So happy to hear the surgery went well and you're on the road to recovery.
Keeping people in hospital must be an Australia thing. Around here they boot you out moments after the last stitch is placed.
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Good Morning Ladies! I was hoping someone could help me with a concern right now. My mother has Stage IV Inflammatory breast cancer. Spread to her liver & lungs. She completed her first round of chemo and is now on Abraxin only (spelling?). Her tumors have all shrunk and at this point no more spreading since diagnosis, however at her last doctors appointment she finally admitted to some of her symptoms. She usually acts like she is completely healthy and that chemo is a walk in the park, she does this because she is scared if she says anything they will stop giving her chemo and she wont be able to fight it. After gong back and forth with her how important it is to tell the doctor everything she finally did. She showed him how her hands, feet, and nails are getting very dry and peeling as well as the tingling in her hands and feet. I of course have quietly been following this forum since her diagnosis and knew what she was experiencing was pretty normal so I didn't pay it too much mind Then she said something that worried me a little. She is bleeding like she is on her period. Very light pink. She has already been through menopause before the cancer. All her doctor said was , "Well, if it keeps happening you may want to see a gynecologist" Oh and the doctor also is cutting back the dosage of chemo because he believes chemo may becoming too toxic for her body now and doesn't want to give her permanent damage. We are now worried that we are losing hope to try and get rid of more cancer with cutting back??
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Lostdaughter, sorry to hear about your mom. It is not uncommon to hear of vaginal bleeding following a chemo. It happened to me with my first go around with chemo. I had not had a period for a while but then bled for a cycle of Adriamycin/Cyclophosphamide. If she is still bleeding, then a gyno app't or ultrasound of her uterus etc. may be called for to rule out anything else. I am sure she mentioned this to her onc as well.
The other thing I would caution for her. It can be hard, and I understand where she is coming from, but, she needs to tell her onc all her symptoms. They will not automatically cut off chemo, but if they don't have the info, they cannot treat her. A lot of the things that happen during chemo can be managed, but only if the doctor knows. Not telling onc something is going on could create a bigger problem down the road. She already has enough to deal with. So do you.
As far as adjusting the chemo (dropping the amount), that is a fairly common thing as well. It does not mean she will not be treated or kept stable on the new amount. I like the sound of her doctor looking out for her to avoid permanent damage as much as possible. The whole Stage IV is the longterm treatment so dose reductions are not unheard of and they can still deal with those mets. It's all about the long view, keep her stable as long as possible with as much quality of life as possible.
Best of luck to you both. Keep us up to date.
Also, if you can, can you fill out some of the your mom's details ie cancer ER/PR positive or negative, HER 2 positive or negative. Also, some of the drugs she may have already done. That can help us to offer suggestions if we are familiar with them.
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So glad to hear from you Traveltext. Sending calm and healing thoughts your way.
Val
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Good to hear everything went well Traveltext. Good wishes for a speedy recovery.
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So pleased that you are home Traveltext, nothing like your own comfy bed. Hope that your recovery is going well and that you are not in too much discomfort.
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Checking in, Having trouble after mild stroke. So tired, the more I do which seems like hardly anything, the more fatigued I am.; They tell me to give it time.
Taste buds have disappeared suddenly. But I've healed fast and quick (didn't seem like it at the time) from really bad rad burns. Immersed in my hobby of doll selling and collecting.
I guess all the long term side effects are showing up. My cancer center as a survivor ship class for when you are done with chemo, rads etc, it was very helpful.
I guess I want to be back to as I was a year ago and that is not happening. So I have to learn to deal with the lack of energy, fatigue, aches and pains after doing what I consider normal things. Yes I work out, and almost stumble to my couch afterwards. I am thinking less and less about recurrence. Partially due to all the scans I've had that you would normally not get. So I'm grateful for the all clear. Just wish I felt better. Thanks for letting me vent.
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Val, hang in there, almost everybody takes at least a year to recover. You are all clear according to the scans, so take that as a huge plus. While your fatigue is lingering and your stroke are complications for you, you need to keep up your strength, do whatever exercise you can, and then collapse on the sofa whenever you feel like it. That worked for me, and lots of others here I'm sure.
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Thanks TT, hope all is well as can be with you.
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Thanks Val, I'm on the road to full recovery. Just got path results and they show a contained tumor with clear margins and negative nodes. A bit of healing and a catheter removal on Friday and I'm back in full action.
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Valstim
Have you had your Vit D and Vit B complex levels checked recently? It is not at all unusual for women in the States to be very low in Vit D especially at this time of year. I've been dealing with SAD (Seasonal Affective Disorder) for over 20 yrs but am able to keep it under control by taking mega doses (per my PA's orders) and using my light box daily. A tually for some unknown reason, I forgot to start increasing my Vit D pills and start using my light box in mid Aug so did start having minor issues before I realized I had forgotten and got back on target.
Vit B is a very complex vit and can also cause low energy.
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so glad to hear TT, best to your speedy recovery. Kicks, I had not thought about my b or vit d. Will get on it right away. Thanks so much.
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Val, I agree with the Vit B and Vit D levels being checked.
I will also tell you from my first go around with treatment, I did not feel almost myself until approximately 6 months past final chemo in 2015. This was also approximately 3 months after finished radiation to the breast in 2015. I had 6 really good months until my tumour started swelling my brain from june this year. My Herceptin did not even cause me any known side effects. It takes a LONG time for the body to recover and of course, your stroke also caused some extra recovery to be needed as well.
You will make it, you have been through the ringer but you will come out the other side. Best of luck.
Glad to hear everything went well with the surgery TT.
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Traveltext, thankful your surgery went well, glad you are ok. You are a tough man!
Kicks, how was the fishing excursion?
Some of you may remember my Oncologist died in a tragic car wreck last July. I met my new Onc last week, she is very nice, with a good reputation. She was very thorough in reading my records, and my previous Onc was her mentor, her friend, and collegue. Having said all that, she wants to make big changes. She wants my port out...my previous Onc said he wanted to leave it, it does not bother me, it is pretty, lol, I mean it is placed well, smooth, comfortable, I do go every 6 weeks for flushing. He said since TNIBC is aggressive, lets leave it at least till 3 years out... he died just before that time. She ordered scans last week said if they were clear, she wants to restage me from a Stage4 to 3C....Kicks knows my staging has been odd, or unique, as I do not have a major organ met, but distant lymph node involvement. He was adamant that I was a stage 4. The new Onc says she "blatantly" disagrees with this, first time ever she disagreed with my Onc. As I am NED, I think he did a great job. I am open to being restaged, but this will change how I am monitored going forward. What do you all think?
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Meadow, I tend to agree with your original onc. Thank goodness there was no other organ involvement, but distant lymph node involvement would make it a Stage IV. I would tend to want to leave it there as there is more surveillance (scans etc) than if you were staged to a 3C.
I agree with your assessment that being NED now is great work, on your part and your previous onc. See what she tells you the new surveillance would involve. How many fewer scans etc or how often will you be scanned. With the TNBC, I would be worried about it showing up in between times causing a mess, but this is a newly dx'd Stage IV talking with a brain met. Take me with a grain of salt as well. I would tend to be more cautious in my advice.
Good luck with whatever you decide. As I say, I am so glad you don't have other organ involvement.
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Mara,thank you, your input means so much
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Meadow, I'd suggest you accept the Stage IIIC diagnosis but have a treatment plan that bears some relation to a Stage IV diagnosis. I say this because any of us Stage III people having had lymph involvement on diagnosis could have dormant distant affected lymphs that don't present as mets until some later time. Meanwhile, take your NED as a good sign that your treatment plan is working.
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My pet scan came back clear of recurrence or metastatic disease and it's been three years to the month. Today's my 67 birthday. On my 60 birthday I was diagnosed with tcc bladder cancer. I was always to tired or didn't have time to request record. I believed my doc. I was drove everywhere by friends and grateful for that. I did get a letter from my onc which stated high histologic grade,tn,with high mitotic grade. Lymphovascular invasion present,multiple positive margins from one mass. I had two. Also my inflammory didn't present as red. Anyway I am going to try to relax some and quite looking at my ragged edge nipple no one else sees. (I used a magnificent mirror. I know brain mets don't show on a pet scan, but my head symptoms are mild and for know I am tired. Thanks for caring
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also all 21 lymph nodes removed were negative. With the tcc I requested copays of everything even during operation. That was a lot of paper. Ha- Ha.I do read my cbc count and the worst thing is my anisocytosis,rare,which make my red blood cell abnormal in shape and makes me tire easily. Thanks again
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Hi Meadow, when you say distant lymph node involvement, may I ask where? How was it determined?
I was very concerned about brain involvement at a Pet does not cover the brain. Now due to a stroke i've had brain MRI"s and spinal MRI's and bone scans, my mo and now told me I'm NED. Funny they did not use that term when I finished treatment. Or is it just me? Not until my brain was cleared by the scans. This was a little disconcerting as my scans were 9 months after diagnosis. hmm . so confusing sometimes. It makes me wonder if those with brain mets soon after treatment had them all along? So many things to consider.
Same with my port. Initially I was told to keep it in 3 years. Now, they are saying they would recommend it out in a few months from now. Personally, I'm keeping it as I'm TNBC. At least for a while as it gives me no trouble.
And my MO and PCP are more worried about more strokes than recurrence.
thanks for letting me ramble.
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Valstim - in my case, MO and RO said they believed my brain met were there all along. Since it only takes a couple of cells to create the tumour and none of the drugs I was on could pass the blood brain barrier, they were able to grow quite nicely to form my large tumour. My chemo and Herceptin did clear up any cancer that was from the neck down very nicely. I am rare that I had brain mets only. Normally a person would have mets elsewhere. This could be due to the Her2+ more commonly showing up as brain mets. I was fortunate that at least initially, there was only the one large tumour. Nothing else showed up on the 4 MRI's I have had since. Hopefully my whole brain radiation will keep my brain clear for longer. Fingers crossed.
I am sure your doctors would be worried about another possible stroke than recurrence. Hopefully neither happens again.
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