... I am very behind on keeping up with my blogs for the past fews months, but thought I would stop by today to give you all a little update.
As of now, I'm doing pretty well -- the Cancer Battle continues, but I'm stable and in the world of Cancer, Stable is always considered a good thing.
My my recent CT Scans (late December) showed that my main lung tumor is still stable (no growth) and is small (15 mm), but has been as large at 4 cm at one time. I am very thankful for Opdivo, the Immunotherapy Med that I honestly feel has saved my life. Unfortunately, it's still causing me to develop "Pneumonitis" a lung inflammation similar to Pneumonia, that does not seem to want to totally clear up. Because this is can become very serious (even fatal) they have stopped the Opdivo and I have not had any treament since late in August. The latest CT Scans also show that is it improving, but it's still there and that's discouraging. It's looking more and more likely that I will not be able to go back on this treatment and that's a bummer, because I really has worked so well. I've also been lucky that for me the Pneumontis has always been considered low-grade, but it's been worse each time and they are not very concerned that putting me back on Opdivo may cause it to flare very quickly and it would likely be even worse. Clearly I don't want to to end up worse off, but it's hard to have to stop a drug that has been so effective in my battle.
As you my recall my Oncolgist (Dr. Sunkara) who I absoltely adore -- left my local hspital for a wonderful new career oppoirtunmity and that's been really difficult for me, because I really was so confident in her care and we developed an wonderful patient/doctor relationship, which is truly vital in this battle. I wish so much that she was close enough so that she could continue to be my primary Oncologist, but she's not. It would be 4-5 hour round trip to see her and I would also have to have all my labs, tests and scans done at a facitlity that is simply much too far from home. I literally creid the day she told me she was leaving, but I am happy for her and the opporutnity this provides for her and I wish her well. She has also been wonderful and promoised me from that day, that she will always be there for me, with any questons or concerns and we are keeping in touch via email. I do hope, in time, to go and see her for a Consult and I have allowed her to continue to have access to all my records, so she can help me with any decisions. I really had been hoping they would hire another Oncologist who is much like her, so that I did not have to change hospitals, but as now that has not happened, so I have been looking into all my options and have been to two consults/second opinions with a Thoracic Oncolgist, who is part of Mass General Hospital in Boston.
As for now, I have not made my final decision on who I want to continue with and because I'm not In "treatment" at this time, I really can't make the decision, until the time comes to resume treatment and then choose which team I feel has the best treatment plan for me. I do like the Oncolgist at MGH/Danvers, but am not happy about having to totally change my Cancer Center, because I love my local Oncology unit and all the nurses and staff there and they have been with me for the last 22 months -- leaving them all behind is a truly a challenge. I also love that my care has been so close to home and involves a short 5-10 ride from home and is a setting I'm so comfortable with. I worked at this hospital for many years, my sons where born there and it's very much "home" to me. Starting all over at this point is almost overwhelming. And as much as I like the Oncologist I'm seeing for the consults, I already feel a bit like a "number" there -- becuase it such a larger center and is not nearly as personal -- and that too is another issue.
For now, I'm "free" until the "end of March" and will then have my next CT Scan and we'll go from there. If I'm still stable, I may be able to stay off treatment even long, but sadly with Stage IV Cancer, we all know at some point, it's giong to come back or change and I will need treatment again. The hardest part will be decided what I want to do and which team will offer me the best options. Also another issue, since options are becoming more limited, as time goes one. I have already been on Chemo, had Radiation and Immunotherapy. Chemo may have to come back into play, and that will be the least likely thing I want -- the most likely scenario at this point, may be a clinical trial, or to possibly switch to another Immunotherpay Drug (they are two others that have FDA approval), however, they also carry the common side effect of Pneumonitis, so ultimatley, they may be even ben an option? UGH!
My plan for the next two months is to try and focus on happy things, and the first will be the birth of my Grand-daughter "Harper Leigh" who is due in five more weeks. I am so excited and can't wait to meet her, hold her and love her. I can still remember the days the kids came to tell us the happy news -- it's hard to believe how fast the time has gone by -- I know the new few weeks will fly by and for me that also means "winter" will soon be over too -- YAY!!
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